If you only believe what you see on social media, you would probably classify cancer patients into two main groups, warriors or worriers. I guess people have, or adopt, these traits from their cancer experience but I suspect many people are simply ‘wired’ that way. I also believe there are many people who have a bit of both, perhaps slanting to mostly warrior or worrier, I mean who doesn’t worry about a single thing? However, the extent of worrying can often have a negative effect on quality of life. You’re not going to stop worrying by simply reading this article but if you read no further, at least check out the lead graphic, it might help putting things into perspective.
I used to do that for a living so I guess I’m an automatic fit, right? Believe it or not, professional ‘warriors’ also worry about stuff but they don’t like showing it (one of the reasons there are serious PTSD issues happening currently).
Despite the protests at the use of ‘war’ metaphors, many cancer patients do see themselves as ‘warriors’. People probably label me as one but …… spoiler alert, behind my positive exuding exterior, there’s a man worried about a problem which might decrease quality of life and also a man worried about potential surgery most likely needed to correct the issue. We all worry but it’s the way we handle stress that is important. Not talking about it is never a good option.
I also think ‘Warriors’ can sometimes be complacent and for a cancer patient, this can be detrimental to their health. In a previous life, nothing was going to stop me getting on with life, nothing was going to stop me going to work, nothing was going to stop me completing my mission. One day, some of my co-workers complained about my constant sneezing, coughing and sniffing. I told them the only way I was leaving the building would be on a stretcher having lost consciousness or in a body bag. I said it whilst I continued typing up a report which was my mission for that day. I said it without any hint of joviality in order they knew that I was deadly serious. Little did I know that my ‘poker face’was just about to become seriously deadly.
We’ve all read the blogs and memes on Facebook…. ‘kicking cancer’s ass‘, etc etc. There’s even twitter handles, Facebook sites, blog names all with the word ‘warrior’ in the title. Nothing wrong with that, nothing wrong with having a positive attitude. The only thing potentially wrong with that, is becoming too complacent about the danger of cancer. Cancer will kill you whether you are a ‘warrior’ or a ‘worrier’.
I come into contact with a lot of Neuroendocrine Cancer patients, either from a thread in my group, my blog site or my Facebook site(s). I get a substantial amount of private messages from patients including on twitter. Many of them are from people who are ‘worried’ – these can often be the toughest conversations I have.
People have many different reasons for worrying ,and there can be totally different factors involved at diagnosis than those surfacing during and after treatment. We worry about a diagnosis and what it actually means, we worry about the treatment we are given, and then we worry about the cancer coming back, this is all very natural. Some people have taken a considerable amount of time to get a diagnosis and their stress levels are already high. Some are young with a long life ahead of them, that is really tough. Some have young children and are worried about their future as well as their own, that is also really tough. There are many other scenarios adding further layers of complexity to an individual’s situation.
I have no magic answer for someone who is constantly worried except to say that they must do something about it as it’s not a good place to be. I once dabbled in this area by writing an article with 8 tips for conquering fear, this was specifically aimed at my own cancer type but I guess it could apply to many others.
Many cancers are not as ‘black and white’ as a lot of people think, i.e. you are diagnosed, it is treated, you are observed, you are cured. Neuroendocrine Cancer is quite definitely a ‘grey’ cancer, i.e. many people take some time to be diagnosed, many are diagnosed at the incurable stage, the treatment regimes differ depending on the primary, stage, grade and many other factors, you are observed for much longer periods than the average cancer patient, perhaps for life, and for many, there is no cure.
For those with incurable conditions, the stress levels can be higher and for longer, potentially leading to other illnesses. The psychological impact of long-term cancer is a developing but as yet unmet need in the Neuroendocrine world and I suspect elsewhere.
Don’t forget the carers and caregivers. I think a lot of carers/caregivers can also be under some stress and worry, I certainly see this a lot in the Neuroendocrine community.
I think there’s a fine line between being a ‘warrior’ or a ‘worrier’ and I believe many people flit between the two quite easily. I think many people might actually be in the middle ground, having accepted their diagnosis, decided it was just another chronic illness and try to live life as best they can.
Cancer can be a very individual disease, not just the different types and sub-types, but also stages, grades, pre-existing medical issues, age, gender. To add to the mix, I think it’s also true to say that how people handle the stress, how people cope is another dimension to be considered.
For those who are predominately ‘warriors’, please don’t forget to look after yourself. For those who are predominantly ‘worriers’, the lead graphic might help put things into perspective.
When you live with any illness, getting through the day can be tough. Trying to get a diagnosis, dealing with a diagnosis, undergoing treatment and then learning to recover and adapt.
I’ve been living with my condition for almost 8 years and I’m a big advocate of keeping busy, keeping active and keeping my mind occupied. Despite this, there are times with a chronic disease, an invisible disease, an incurable and long-term disease including cancer, occasionally just doing nothing can be very productive in the long term!
Of course, sometimes you have little choice if you’re ill from your condition or something routine.
So now and then, I just breathe in and breathe out (then repeat). It’s very enjoyable!
Firstly, let me say that I have no intention of advising you how to lose or gain weight! Rather, I’d like to discuss what factors might be involved and why people with NETs might lose or gain weight either at diagnosis or after treatment. Clearly I can talk freely about my own experience and associated weight issues. If nothing else, it might help some in thinking about what is causing their own weight issues.
I wrote a patient story for an organisation over 3 years ago and it started with the words “Did you mean to lose weight”. Those were actually the words a nurse said to me after I nonchalantly told her I thought I’d lost some weight (….about half a stone). I answered the question with “no” and this response triggered a sequence of events that led to all the stories in all the posts in this blog (i.e. my diagnosis).
I annoyingly can’t remember at which point I started to lose the weight but I was initially reported to have Iron Deficiency Anemia due to a low hemoglobin result and my subsequent iron test (Serum Ferritin) was also low and out of normal range. This, combined with the weight loss, the GP was spot on by referring me to a clinic. The sequence of events during the referral led to a diagnosis of metastatic NETs (Small Intestine Primary). If I had been a betting man, I would have put money on my GP thinking “Colorectal Cancer”. So my adage “If your doctors don’t suspect something, they won’t detect anything” applies.
I can also tell you that I weigh myself most days at the same time using the same scales. Weight loss or gain needs to be recorded. Clearly 2 or 3 pounds is nothing to worry about, I found you could put on or lose that amount in a day, depending on time of weighing and food intake. I’m looking for downwards or upwards trends of 7lbs or more (3kg).
Why did I lose weight?
The drop from 12st to 11st was clearly something to do with the anemia symptom (the NETs). But after diagnosis, I had major surgery about 10 weeks later. When I left the hospital after my 19 day stay, I was a whole stone lighter (14 lbs or 6.3 kg). I guess 3 feet of intestine, the cecum, an ascending colon, a bit of a transverse colon together with an army of lymph nodes and other abdominal ‘gubbins’ actually weighs a few pounds.
However, add the gradual introduction of foods to alleviate pressure on the ‘new plumbing’, and this is also going to have an effect on weight. I remember my Oncologist after the surgery saying to use full fat milk – the context is lost in memory but I guess he was trying to help me put weight back on. I also vividly remember many of my clothes not fitting me after this surgery. In fact, since 2010, I’ve actually dropped 2 trouser sizes and one shirt/jumper size. I did spend a lot of time in the toilet over the coming months, so I guess that also had an impact! However, what I wasn’t aware of was the side effect of my surgery. I started to put on some weight in time for my next big surgery – a liver resection. The average adult liver weighs 1.5 kg so I lost another 1 kg in one day based on a 66% liver resection.
However, what was also going on was something that took me a while to figure out – malabsorption and vitamin/mineral deficiency. My new ‘plumbing’ wasn’t really as efficient as my old one, so the malabsorption. issues caused by a lack of terminal ileum was slowly starting to have an effect. The commencement of Lanreotide in Dec 2010 added to this complication. That knowledge led me to understand some of the more esoteric nutritional issues that can have a big effect on NET patients and actually lead to a host of side effects that might be confused with one of the several NET syndromes. What it also confirmed to me was that I could still eat foods I enjoy without worrying too much about the effect on my remnant tumours or the threat of a recurrence of my carcinoid syndrome, something I was experiencing prior to and after diagnosis.
Armed with the ‘consequences of NETs’ knowledge, I did eventually adjust my diet and my weight has now ‘flat-lined’ at around 10 st 7 lbs (give or take 1 or 2 lbs fluctuation). Amazingly, the same weight I was when I left hospital after major surgery, looking thin and gaunt and not very well at all! The difference to day is that I have adapted to my new weight and look fit and healthy.
I actually lost another half a stone (7 lbs or 3.5 kg) in 2014 whilst training for an 84 mile charity walk – many commented that I looked thin and gaunt despite being extremely fit from all the training. Perspectives. It took several months to put the weight back on but at least I knew what had caused the loss and then subsequent gain.
I don’t have any appetite issues although I try to avoid big meals due to a shorter gut, so I snack more. With the exception of the 4 months of intense training for the 84 mile hike, I cannot seem to lose or gain weight. As my current weight is bang in the middle of the BMI green zone (healthy), I’m content.
Why do NET patients lose weight?
That’s a tricky one but any authoritative resource will confirm fairly obvious things such as (but not limited to) loss of appetite and side effects of cancer treatments. NETs can be complex so I resorted to researching the ISI Book on NETs, a favourite resource of mine. I wanted to check out any specific mentions of weight and NETs whether at diagnosis or beyond. Here’s some of the things I found out:
Carcinoid Syndrome. Weight loss is listed but not as high a percentage as I thought – although it tends to be tied into those affected most with diarrhea.
Gastrinoma/Zollinger-Ellison Syndrome. Up to half of these patients will have weight loss at diagnosis.
Glucagonoma. 90% will have weight loss.
Pheochromocytoma. Weight loss is usual.
Somatostatinoma. Weight loss in one-third of pancreatic cases and one-fifth in intestinal cases.
VIPoma. Weight loss is usual.
MEN Syndromes. One of the presentational symptoms can be weight loss.
Secondary Effects of NETs.
Many NETs can result in diabetes (particularly certain pNETs) and as somatostatin analogues can inhibit insulin, it could push those at borderline levels into formal diabetic levels (including any type of NET using long term somatostatin analogues). In people with diabetes, insufficient insulin prevents the body from getting glucose from the blood into the body’s cells to use as energy. When this occurs, the body starts burning fat and muscle for energy, causing a reduction in overall body weight.
It must be emphasised that there will always be exceptions and the above will not apply to every single patient with one of the above.
Suggested reading for putting weight back after surgery
An excellent reference document produced by Royal Free Hospital, authored by Tara Whyand and distributed via the NET Patient Foundation – hints and tips for different types of NET by anatomy: click here
What about weight gain?
You always associate weight loss with cancer patients but there are some types of NETs and associated syndromes which might actually cause weight gain. Here’s what I found from ISI and other sources (as mentioned):
Cushing’s Syndrome. Centripetal weight gain is mentioned. (Centripetal – tends to the centre of the body). I also noted that Cushing’s Syndrome tends to be much more prevalent in females. Cushing’s syndrome comprises the signs and symptoms caused by excessive amounts of the hormone cortisol (hypercortisolism) or by an overdosage of drugs known as glucocorticoids.
Insulinoma. Weight gain occurs in around 40% of cases, because patients may eat frequently to avoid symptoms. However, according to an Insulinoma support group site, I did note that after treatment (some stability), things can improve.
Again, it must be emphasised that there will always be exceptions and the above will not apply to every single patient with one of the above. As in weight loss scenarios, the Secondary Effects of NETs can have an effect.Hypothyroidism is another potential issue and weight gain is a listed symptom. I just been diagnosed with hypothyroidism this year but I was not gaining weight!
The NETs Jigsaw
Like anything in NETs, things can get complex. So it is entirely possible that weight loss or weight gain is directly caused by NETs, can be caused by side effects/secondary effects of treatment, and it’s also possible that it could be something unrelated to NETs (Dr Liu “Even NET patients get regular illnesses“). I guess some people might have a good idea of the reason for theirs – my initial weight loss was without doubt caused by the cancer and the post diagnostic issues caused by the consequences of the cancer.
I guess that weight loss or weight gain can be a worry. I also suspect that people might be happy to lose or gain weight if they were under/over weight before diagnosis (every cloud etc). However, if you are progressively losing weight, I encourage you to seek advice soonest or ask to see a dietician (preferably one who understands NETs).
Edit: I changed my blood thinner in May 2017 and lost 2kg (4 pounds) after 6 months.
Edit: I started Creon at the beginning of 2018 (read about this here) and almost immediately put on 2kg (4 pounds) to offset the 2kg loss from 6 months prior. However, no real change after 3 months of Creon (March 2018).
Edit: I was recently diagnosed with Hypothyroidism, one of the symptoms can be weight gain. Clearly that has not applied to me. Hyperthyroidism is the opposite condition where weight loss is a symptom.
Edit: Due to a bad chest infection in June 2018 and due to the consequences of the effects of that illness and most likely the treatments undergone, I have dropped three quarters of a stone (~10lbs). My lightest weight for over 30 years. To me that is a significant loss of weight in such a short space of time. Currently trying to put it back on again – I need the weight!
Edit: 4 Sep 2018. After the 10lbs (~4.5kg) loss following the chest infection, people who see me regularly have noticed the visible difference. I’m still struggling to get back beyond 10st after 2 months. I’m monitoring this really closely.
Edit: 28 Nov 2018. I’m back at 10st after increasing my dosage of Creon.
Edit: 10 Jan 2019. I’m back at 10st 3lbs, my approximate weight before the chest infection. It’s taken 7 months and the recent acceleration coincides with Creon dose increase.
Edit 7th Feb 2019. Changed from Creon to Nutrizym.
Edit: 17 Mar 2019. It appears my trouser waist size is back to 32″. Is the use of Pancreatic Enzymes making me eat more, or getting more nutrients through, or making me eat food which makes me put on weight?
For those wishing to see the output from an online discussion with Tara Whyand on the subject of ‘Weight’ issues for NET patients – please see this link inside my closed Facebook group.
Before I was diagnosed with cancer, my health was in reasonable condition. I had minor irritants that seemed to come back now and then, nothing that was going to kill me. So I just put up with most of it and time was frequently a good healer. Occasionally, I would use medicine to speed up the healing or ask a doctor for advice. Even leading up to my diagnosis, this was my strategy despite some strange things going on. Luckily for me, the ‘system’ picked up something suspicious and I am where I am today. It’s amazing to think a cancer can grow inside you for years causing a lot of damage but without a grand announcement.
Following diagnosis, I got quite a lot of attention in the first 2 or 3 years as I went through various surgical and other types of treatment, and I eventually earned the accolade of ‘stable’. Not cured, not in remission, not totally free of disease, just ‘stable‘. I guess I’m one of millions of people who now have a condition to live with for the rest of their life.
I may be stable but I still need support and surveillance!
But I haven’t really been left alone, I have meetings with my specialists every 6 months plus routine surveillance testing. I have my GP (PCP) on tap via same day appointments. Thankfully, my tumours are slow growers and the biochemistry results that check their growth and function have been normal for some years now. I also have my specialists’ telephone numbers in the event of an emergency. The other great thing is that I’m lucky to have a direct line to a specialist Neuroendocrine Cancer Nurse for routine stuff. So I can sit back and relax, right? ……… Sounds good but not really the whole story.
I’m in tune with my body
I can honestly say I’ve never been more in tune with my body – there’s nothing like a cancer diagnosis to force you into a change of attitude. Not just about how you look after your body but learning how to read the signs and assess risk. However, the difficult area with this disease is that many of the side effects of treatment can mimic the symptoms of a recurrence or further spread and vice versa. And sometimes there can be no rhyme or rhythm (or logic) when patients experience these things. I once wrote about the “Neuroendocrine Cancer Jigsaw” where patients had pieces called Signs, Symptoms, Side Effects, Secondary Illnesses, Syndromes, Comorbidities and Coincidences. I also include the proverbial ‘missing piece’ as part of the jigsaw! However, I do think the ‘missing piece’ can sometimes be a metaphor for an instantly contactable NET expert or even some experience and education by the patient or a trusted advocate.
Sorting out the symptoms
The comorbidity and coincidence pieces were belated add-ons to the list because sometimes it not all about the cancer – even cancer patients get regular diseases and ailments. The difficulty is working out if there is a connection or not. Take my 2017 issue of back/hip/leg pain for example. I analysed all the timings in my diary (…top tip, keep a diary), there were no common connections to any particular occurrence or activity for all occurrences of the pain. I got some pain killers and decided to tough it out. After 14 days, I got fed up and saw my GP (PCP). I also ran it past my NET Specialist Nurse for assurance. After 22 days, I was still doing pain killers, waiting on a physiotherapy appointment; and doing back exercises at home. Why is my back pain suddenly a lot worse? My Calcium and Vitamin D are checked regularly and everything is in range. I’ve been receiving somatostatin analogues for over 6 years, so that might be a factor. I also reminded myself I’m no longer 21 (so did my NET Nurse!). Three months later, after seeing a physiotherapist, things improved. However, I would be lying if it didn’t cross my mind that the problem could be bone metastasis. I studied the symptoms of bone metastasis and concluded that I have none of those other than the pain. I analysed my recent scan which said there were “no bony lesions”. I also registered the fact that my biochemistry results are rather good and have been for 6 years.
And then there were the 3 episodes of constipation where the possibility of a bowel obstruction floated around in my thoughts. However, time was once again a healer (along with some quick advice from my specialist NET Nurse!).
A couple of years ago, I thought I felt a lump on my right clavicle by the sternum. However, an MRI later dismissed it as nothing. Due to a piece of metal in my body, to be honest I was more scared about the MRI than the potential lump!
I always remember a great quote from Dr Eric Liu “Even NET Patients get regular illnesses“. He’s right. But it’s also right that people living with a long-term cancer can live in perpetual fear of a worsening state of health or a recurrence of the cancer. For the incidents I highlighted above, the fear that these things were related to cancer growth or recurrence did go through my mind.
Fear can actually be a side effect of cancer
I think all those living with cancer need to be alert and be proactive via education and communication with their medical team and GP (PCP). However, stopping yourself thinking that anything wrong with your body is somehow connected to the cancer, perhaps needs a different approach, particularly if you have a higher than average risk for recurrence. Fear of cancer relapse or recurrence, is said to be associated with poor quality of life, greater distress, lack of planning for the future, and greater healthcare utilisation. However, if you do suffer from this type of fear, you’re not alone. A recent study stated that 50 percent of all cancer survivors have moderate to high, or clinically significant, fear of cancer relapse, which could persist over the whole trajectory of their illness. Younger patients might have a bigger challenge on their hands as their future is uncertain. Patients with young children have an additional concern, that’s another fear area and a very difficult and tough one. And those on the older side who initially thought they might not see grandchildren, or see them growing into adults, that is something I personally found tough.
Psychological problems – another unmet need? Probably.
Conquering fear is difficult and no one size fits all. However, in the most general terms I would suggest the following 8 tips:
Accept your diagnosis – you have cancer, it has the potential to change your life, you most likely need to make adjustments. But this is not to say you also accept that improvements cannot be made and things will not get better …. because they can. This is particularly important for those with incurable cancers needing treatment for the foreseeable future. I accepted my situation very early on and I think that has been helpful in the long-term. Prognostic detail is a worrying thought and a difficult one. However, no-one really knows for sure. After 8 years with an incurable metastatic cancer, I’m still here and continue to be heartened by comments such as these here (click here).
Accept that your road will probably not be straight and smooth. There will be bumps and bends and you will need to deal with them as and when they arise. Don’t try to second guess what the bumps and bends might be and then worry in case they happen. No-one really knows for sure and they might not happen.
Identify your triggers – what is it that is triggering your thoughts? For me it’s more physical things like the lump, constipation and back pain. Other triggers for some might simply be an anniversary of a diagnosis or a treatment etc (or both), or an upcoming treatment. Think about how you can get past these obstacles. For example, on ‘cancerversaries’, plan to be doing something that’ll take your mind of it. For physical things including upcoming treatment, it’s all about what I said above, education, risk management and communication with your medical team ….. put yourself in control. I also have great sympathy for younger patients and those with young dependent children. I can’t put myself in their shoes and all I can suggest is that these tips are still relevant in some way.
Talk about it. Family, friends, other patients, your medical team. I don’t have any issues talking about it – writing posts in my blog is also really therapeutic for me (even this one!) and I hope others appreciate it too. Patient forums can be frighteningly good but …. be careful, many can also be good at frightening and stressful.
Social Media and the Internet. Although talking about your cancer can be a stress reliever, clearly social media can actually be fraught with danger. As I said above, patient forums can be frighteningly good but also good at frightening. You can extend this issue to the entire internet, which is full of false claims of internet cures spreading false hope, out of date prognostic data causing unnecessary fear and anxiety. Pick your social media and internet sites carefully, fake news, incorrect healthcare news, and bad advice is very easy to find.
Focus on Wellness. This is a huge area and it’s pretty much up to you to resolve. Yes, some willpower is involved and it includes both physical and mental wellness. For me I try to do exercise when I can (mostly walking) and I try to make sure I get 8 hours sleep (this is a fairly recent tactic which is really helping with fatigue). With diet, I try to avoid anything that greatly exacerbates the side effects of my treatment. Travelling, family and visiting places with fantastic views is most definitely a tonic for me (and that normally means exercise to get there). Anything that makes you relaxed!
Be patient. Fear of your condition taking a downwards movement will probably never completely go away but perhaps as I said above, time is a healer. It took me over 3 years to become more relaxed about my own future.
If all the above doesn’t work, perhaps professional counselling is required? There are specialists who work with cancer patients to help them accept that fear of recurrence/relapse is a normal part of the cancer experience. They can help you develop strategies to cope with your fears and move forward with your life.
If you think your psychological issues are unmanageable, I strongly encourage you to talk with your doctor or a counsellor. In fact, you may appreciate this excellent videofrom NET Patient Foundation presented by Kym Winter, a qualified Psychotherapist and Counsellor – click here.
I also liked this videoby Dr Michael Burke, a Psychiatric Oncologist – click here
Remember …….. “Googling your symptoms when you’re ill can sometimes be the most efficient way to convince yourself you’re dying”. Anon
There’s a lot of inaccurate and out of date information out there. Some is just a lack of understanding, often with a combination of patient forum myth spreading. Some can only be described as propaganda.
Myth 1: All Neuroendocrine Tumours are benign
Not true. By any scientific definition, the word ‘tumour’ means ‘an abnormal mass of tissue that results when cells divide more than they should or do not die when they should. Tumours may be benign (not cancerous), or malignant (cancerous)’. Sure, some NETs will be benign. However, The World Health Organisation (WHO) 2010 classification for digestive system is based on the concept that all NETs have malignant potential, and has therefore abandoned the division into benign and malignant NETs and tumours of uncertain malignant potential. This has been reinforced in the 2017 update to include clarification for other endocrine organ types of NET including Pheochromocytoma. Read more here. The word ‘Carcinoid’ is inextricably linked with this issue – read here why we need to stop using the term to help fight the benign myth.
Myth 2: Neuroendocrine Tumours is a terminal condition
Not true. By any definition of the word terminal in a medical diagnostic context, most NET patients have a good prognostic outlook, even those with metastatic and incurable variants of the disease. Read more here.
Myth 3: Carcinoid is another word for Neuroendocrine Tumours
Not true. Carcinoid is a very old term and was phased out years ago. Carcinoid is not mentioned in the latest WHO Classification schemes for Neuroendocrine Neoplasms (a term covering Neuroendocrine Tumours and Neuroendocrine Carcinoma). Unfortunately, the problem is exacerbated by organisations and individuals who still use the word. Also, those who use the following terms:
“Carcinoid and Neuroendocrine”,
“Neuroendocrine and Carcinoid”,
“Carcinoid NETs” or “CNET”
These are all contextually incorrect and misleading terms (not to mention the bad grammar). ENETS, NANETS and NCCN publications are gradually phasing the word out except in relation to Carcinoid Syndrome (and even then there could be easy solutions for this). Read more here and here.
Myth 4: All NET patients get ‘carcinoid syndrome’
Not true. Firstly, many NET cancers are non-functional; and secondly, carcinoid syndrome is only one of a number of “NET Syndromes” associated with the various types of NET. However, the issue is further confused by those who use the word ‘Carcinoid‘ to incorrectly refer to all NETs and use Carcinoid Syndrome to refer to all NET Syndromes. Read more here.
Not true. Steve Jobs had a Neuroendocrine Tumour of the Pancreas. Ditto for a few other famous names. Read more here.
Myth 7: I’m not getting chemotherapy, I must be doing OK?
Not true. For some cancers or some sub-types of cancers, although it remains an option, chemotherapy is not particularly effective, e.g. some types of Neuroendocrine Cancer (NETs). In general, well differentiated NETs do not normally show a high degree of sensitivity to chemotherapy, although some primary locations fare better than others. However, many of the treatments for NET Cancer are somewhat harsh, have long-term consequences, and have no visible effects. NET patients are often said to “look well” but that doesn’t mean they are not struggling behind the scenes or under the surface. Read more here. P.S. Afinitor (Everolimus), Sutent (Sunitinib) are not chemo – Read more here.
Myth 8: All diarrhea is caused by carcinoid syndrome
Not true. It could be one of the other syndromes or tumor types or a side effect of your treatment. Check out this post.
Myth 9: Neuroendocrine Tumours is a ‘good cancer’
Not true. Simply, no cancer is good. Some are statistically worse than others in prognostic terms, that’s true…… but living with NETs is very often not a walk in the park. However, no one cancer is better to get than any other – they’re all bad. Read more here.
Myth 10: Every NET Patient was misdiagnosed for years
Not true. Many NET Patients are correctly diagnosed early on in their investigation and in a reasonable time. This myth is perpetuated because of two things: firstly, on forums, the ratio of long-term misdiagnosis is high creating a false perception; and secondly, the method of capturing patient surveys is not extensive enough – again creating a false perception. In fact, the latest and largest database analysis from US indicates earlier diagnosis is improving, with more and more NETs being picked up at an early stage. Read more here.
Myth 11: Somatostatin Analogues are a type of Chemotherapy
Not true. Somatostatin Analogues (e.g. Octreotide and Lanreotide) are not chemotherapy, they are hormone inhibiting drugs. They are more biotherapy. As the drugs latch onto somatostatin receptors, they are more targeted than systemic. For the record, Everolimus (Afinitor) and Sunitinib (Sutent) are not chemotherapy either. Read more here.
Myth 12: Stuart Scott (ESPN) and Audrey Hepburn had Neuroendocrine Cancer.
Not true. This is a common misunderstanding within the community. They both had Pseudomyxoma Peritonei (PMP). Read more about PMP here.
Myth 13: I’ve been diagnosed with Neuroendocrine Tumours – my life is over
Not true. Many patients live a very long time and lead fairly normal lives with the right treatment and support. It’s difficult but I try not to use ‘I can’t’ too much. Read more here.
Myth 14: There are only a handful of Neuroendocrine specialists in the world
Not true. There are many specialists in many countries. Get links to specialists by clicking here
Myth 15: The Ga68 PET scan is replacing the CT and MRI scan in routine surveillance for all NET Patients
Not true. It is actually replacing the Octreotide Scan for particular purposes, or will eventually. Read more by clicking here.
Myth 16: All NET Patients are Zebras
Not true. They are in fact human beings and we should treat them as such. Please don’t call me a zebra, I and many others don’t appreciate it. Please don’t use the term on my social media sites, the comment or post will be removed. Sorry but I refuse to perpetuate this outdated dogma. Read why here:
Myth 17: Multiple Endocrine Neoplasia (MEN) is a type of Neuroendocrine Tumour
Not true. Multiple Endocrine Neoplasia are syndromes and inherited disorders not tumours. You can actually have MEN and not have any tumours. However, these disorders can put people at more risk of developing Neuroendocrine or Endocrine Tumours. Read morehere
Myth 18: Palliative Care means end of life or hospice care
Not true. Palliative care is specialized medical care that focuses on providing patients relief from pain and other symptoms of a serious illness. A multidisciplinary care team aims to improve quality of life for people who have serious or life-threatening illnesses, no matter the diagnosis or stage of disease. Read more here
Myth 19: Serotonin is found in foods
Not true. Serotonin is manufactured in the body. Read more here
Myth 20: NETs cannot be cured
Not true. If caught early enough, some NETs can be treated with curative intent (totally resected with margins) with little or no further follow up. It says this in ENETS and NANETS publications which are authored by our top specialists. If we can’t believe them, who can we believe? Read more here.
Myth 21: Pancreatic Enzyme Replacement Therapy (Creon etc) is only for pancreatic patients
Not true. It’s for any patient who is exhibiting exocrine pancreatic insufficiency. Read more here.
Myth 22: High Grade NETs are Carcinomas
Not entirely true. Grade 3 (high grade) comprises well differentiated tumours and poorly differentiated tumours. Only poorly differentiated tumour are carcinomas. Read more here.
More to follow no doubt
For general cancer myths and the dangers of fake health news, please see my ARTICLE HERE
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OPINION. Date of Article March 2017. In the last 24 months, there seems to have been announcement after announcement of new and/or upgraded/enhanced diagnostics and treatment types for Neuroendocrine Cancer. Increased availability of radionuclide scans, increased availability of radionuclide therapies, combination therapies, increased availability of somatostatin analogues, biological therapies, enhanced surgical and minimally invasive techniques, new oral drugs for carcinoid syndrome, more trials including immunotherapy. Admittedly, some of the announcements are just expansions of existing therapies having been approved in new regions. Compared to some other cancers, even those which hit the headlines often, we appear to be doing not too badly. However, the pressure needs to stay on, all patients, regardless of where they live, need access to the best diagnostics and treatments for them; and at the requisite time. This alone is one very big unmet need in a whole range of countries still lacking.
The ‘War on Cancer’ forgot about Neuroendocrine
The ‘war on cancer’ has been around for the last 50 years, it’s still being waged. There are now more ‘fronts’ and it’s taking longer than thought to find the ‘cure’. Despite this 50 year war, it seems like there’s only been a war on Neuroendocrine Cancer for the last 10 of those years. I guess they were focused on the big cancers and/or the seemingly impossible ‘universal cure’. Prior to that, for NETs, there is only evidence of some skirmishes, more like guerrilla warfare. Now we have a developed nuclear capability! I believe the turning point was the SEER database work carried out by Dr James Yao in 2004 who confirmed the incidence had grown by 400% in 3 decades, i.e. confirming it was no longer rare. The rise of both incidence and prevalence was then amplified in the follow on ‘2012’ study (Desari et al) which confirmed a 640% increase in 40 years.
Let’s not forget about the consequences of cancer
It is true that half of people diagnosed with cancer now survive for at least ten years. Many live for years with cancer, on ‘watch and wait’ or going through various treatments and tests; their future remaining uncertain. For this group, and even for those whose treatment has successfully removed or shrunk their tumour, the struggle with the consequences and late effects of cancer and its treatment can last for years. Many Neuroendocrine Cancer patients fit into this category.
There’s a lot of work going on within all cancer communities to address the unmet needs of cancer patients who are now living with cancer rather than dying of it. Clearly we need this type of support in the NET world. The issue has been discussed at ENETS for the last two years and I was pleased to have asked the very first question about this particular unmet need, emphasising we need more support for those living with Neuroendocrine Cancer, including research into their common issues. I’ve yet to see any concrete output from the two year’s worth of campaigning.
Unmet Needs for NETs
So, there’s a lot of treatments for many types of Neuroendocrine Cancer out there, just not everyone has access to them – therefore an unmet need at the international level. Others are earlier diagnosis, access to multi-disciplinary teams (MDT), ability to access quality information at diagnosis and beyond including clinical trials, funding, accurate national registries to improve statistics and more treatments fot some of the less common types. One area where I feel there is a huge unmet need is in the area of patient support following diagnosis. Although some countries are more advanced than others in this area, even in the so-called advanced countries, there are huge gaps in provision of long-term support for those living with Neuroendocrine Cancer. For example, physicians need to focus more on:
Late diagnosis. People will be dealing from the effects of late diagnosis which has resulted in metastatic disease – and some people will have been fighting misdiagnosed illnesses for years. That takes its toll.
Consequences of Surgery. People will have had surgery which in many cases is life changing – various bits of the gut (gastrointestinal tract) are now missing, lungs are now missing – many other locationswill have been excised or partly excised. These bits of our anatomy were there for a purpose and QoL takes a hit when they are chopped out.
Inoperable Tumours and Syndromes. People will be dealing with remnant and/or inoperable tumours which may or may not be producing an associated NET syndrome (some of the symptoms can be rather debilitating in the worst cases)
Consequences of Non-surgical Treatment. Additionally, people will be dealing with the side effects of multi-modal non surgical treatments, such as somatostatin analogue hormone therapy (Octreotide/Lanreotide), chemotherapy, biological therapy (mTOR inhibitors) (i.e. Everolimus (Afinitor)), biological therapy (protein kinase inhibitors (i.e. Sunitinib (Sutent)), radionuclide therapy (i.e. PRRT). Whilst it’s great there are a wide range of therapies, they all come with side effects.
Secondary Illnesses and Comorbidities. Some people will have gained secondary illnesses in part due to the original cancer or treatment – e.g. somatostatin analogue hormone therapy can have a side effect of increasing blood sugar to diabetic levels. There are many other examples.
Finances. NET Cancer can be an expensive cancer to treat and this is exacerbated by the length of time the treatment lasts. A highly prevalent cancer, treatment is for life. It follows that NET Cancer is an ‘expensive’ cancer to have. Whilst most people have access to free public services or private insurance, many people will still end up out-of-pocket due to their cancer.
Emotional Aspects. Many NET patients are kept under surveillance for the remainder of their lives. With that comes the constant worry that the cancer progresses, tumours get bigger, new tumours show up, treatments are denied (i.e. PRRT in the UK). It’s no surprise that anxiety and depression can affect many patients in these situations. To some extent, there can be a knock-on effect to close family members and carers where applicable.
As I said in my question to the panel, even if you found a cure for NETs tomorrow, it will not replace the bits of my GI tract excised as part of my treatment. For many people, even ‘beating’ cancer might not feel much like a ‘win’. It’s a two-way street though – we need to work with our doctors, trying to change lifestyles to cope better with some of these issues. This is why it’s really important to complete patient surveys. However, my point is this: more research into some of these issues (e.g. nutrition, optimum drug dosage, secondary effects) and earlier patient support to help understand and act on these issues, would be good starters. I think some centres are doing elements of this type of support but we need a guideline generating in national and international groupings so that that others can be persuaded to formally introduce it.
“Adding life to years is as important as adding years to life”
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Before I was diagnosed, I had my share of illnesses. Fortunately, many of them were the routine stuff that most people tend to get from time to time, and most did not stop me getting on with whatever needed doing. I served in the military from age 16 until 45 – a long time! On only two occasions during that 29-year period, did I involuntary visit a hospital: aged 16 having been knocked out at boxing (you should have seen the other guy!) and aged 39 after falling off a vehicle (in my defense it was really dark). Illness wasn’t really something I thought much about and for minor things, I would just “soldier on.” So, from an early age, I truly believed a “poker face” was necessary for “street cred” but I guess that was ingrained in the military mindset.
Even out of the military environment, old habits die hard as I adopted the same attitude. The “mission” comes first and my health second. A few “civilians” once suggested I go home after coughing, sniffing and sneezing my way through a day in the office. I responded in the only way I knew by saying I would only be leaving the office early on a stretcher having lost consciousness. To get them off my back, I made sure there was no hint of banter or joviality in the statement. This tactic didn’t really work and they laughed at something they perceived as a joke. However, little did they know, I was deadly serious. Little did I know, my gung-ho attitude and poker face were to become seriously deadly.
In 2010, along came cancer. For a couple of years before diagnosis, I had not been sufficiently focused on my health and soldiered on, ignoring what I now know to be key symptoms of neuroendocrine cancer. Even leading up to diagnosis, I was dismissive, refusing to acknowledge this was a threat. Other people get cancer, but not me! I even landed in the hospital via the ER as I refused to slow down after a biopsy. Still in denial, I thought I could beat cancer not knowing that cancer knew with 100 percent certainty that it could beat me. I went on to have surgery and other treatments, but apart from that, I basically marched on as it nothing had happened. However, as the effects of cancer and the consequences of the treatment started to bite, I accelerated my learning on how the disease might affect me in the future. This knowledge has enabled me to manage risk and make better assessment/decisions about seeking help. But it took a while, and gradually over a period of three years, I shifted the focus from work to health.
It’s not been easy to learn how to live with my incurable disease since diagnosis. Finding a balance between how I want to live and how to stay alive has been difficult. My “stiff upper lip” combined with an appetite for work didn’t really help in the end. In 2013 (three years after diagnosis), I finally found the time to work on the reasons for fatigue and many other symptoms. I made some really good improvements to my quality of life. I still have issues, but my cards are no longer close to my chest – they’re now more frequently on the table, particularly when speaking to doctors and close family. My poker face is still there for special occasions, just more relaxed!
“It’s the cancer,” can sometimes be the most convenient excuse to not do stuff. I can play the “cancer card” as well as the next person, and it will trump all others! I also understand that motivation can be difficult with a chronic illness. However, I don’t want to fall into the trap of doing nothing all the time. That’s not a good outcome. Consequently, I try not to use the metaphorical cancer card too much. In fact, I sometimes even say “I can” when I actually feel like playing the cancer card. I’m nearly always glad I did.
Diarrhea can be a symptom of many conditions but it is particularly key in Neuroendocrine Tumour (NET) Syndromesand types, in particular, Carcinoid Syndrome but also in those associated with various other NET types such as VIPoma, PPoma, Gastrinoma, Somatostatinoma, Medullary Thyroid Carcinoma.
Secondly, it can be a key consequence (side effect) of the treatment for Neuroendocrine Tumours and Carcinomas, in particular following surgery where various bits of the gastrointestinal tract are excised to remove and/or debulk tumour load.
There are other reasons that might be causing or contributing, including (but not limited to) endocrine problems such as hyperthryoidism, mastocytosis or Addison’s disease (which may be secondary illnesses in those with NETs). It’s also possible that ‘non-sydromic’ issues such as stress and diet are contributing. It could be caused by other things such as Irritable Bowel Syndrome (IBS). Yes, believe it or not, NET Patients can get normal diarrhea causing diseases too!
I want to give a general definition of diarrhea as there are many variants out there. In general, they all tend to agree that diarrhea is having more frequent, loose and watery stools. Three or more stools per day seems to be the generally accepted threshold, although some sites don’t put a figure on it. It’s not pleasant and just about everyone on the planet will suffer it at some point in their life, perhaps with repeated episodes. Normally it’s related to some kind of bug, or something you’ve eaten and will only last a few days before it settles (acute diarrhea). Diarrhea lasting more than a couple of weeks is considered chronic and some people will require medical care to treat it. It can also be caused by anxiety, a food allergy/intolerance or as a side effect of medicine. Pharmacists and GPs will be seeing many patients with this common ailment every single day of business.
Diarrhea induced by a Syndrome
When you consider the explanation above, it’s not really surprising that diarrhea related symptoms can delay a diagnosis of Neuroendocrine Cancer (and most likely other cancers too, e.g. pancreatic cancer, bowel cancer). For example, diarrhea is the second most common symptom of Carcinoid Syndrome (Flushing is actually the most common) and is caused mainly by the oversecretion of the hormone Serotonin from the tumours. Please note diarrhea in other types of syndromes or NETs may be caused by other hormones, for example it may also be caused by excess calcitonin in the case of Medullary Thyroid Carcinoma or VIP in the case of a functional pNET known as VIPoma. I’ve heard stories of people being told they have IBS or something similar for years before they received what is now a late diagnosis and at an advanced cancer stage. This is only one of the reasons why NETs is not an easy condition to diagnose, although it is possible that some people actually had IBS and it was masking the NET. Even after treatment to remove or reduce tumours, many people will remain syndromic and need assistance and treatment to combat diarrhea induced by a NET syndrome (see below).
Diarrhea as a Consequence (Side effect) of Treatment for Neuroendocrine Cancer and Other Conditions
All cancer treatments can have consequences and Neuroendocrine Cancer is definitely no exception here. For example, if they chop out several feet of small intestine, a chunk of your large intestine, chunks (or all) of your stomach or your pancreas, your gallbladder and bits of your liver, this is going to have an effect on the efficiency of your ‘waste disposal system’. One effect is that it will now work faster! Another is that the less effective ‘plumbing’ may not be as efficient as it was before. There are also knock-on effects which may create additional issues with the digestive system including but not limited to; Malabsorption and SIBO. I recommend you read my posts on Malabsorption and SIBO.
Surgery can often be the root cause of diarrhea. A shorter gut for example, means shorter transit times presenting as increased frequency of bowel movements. Another example is the lack of terminal ileum can induce Bile Acids Malabsorption (BAM) (sometimes known as Bile Salts Malabsorption) in degrees of severity based on size of resection. Lack of a gallbladder (common with NETs) can also complicate. Bile Acids are produced in the liver and have major roles in the absorption of lipids in the small intestine. Following a terminal ileum resection which includes a right hemicolectomy, there is a risk that excess Bile Acids will leak into the large intestine (colon) via the anastomosis (the new joint between small and large intestines). This leakage can lead to increased motility, shortening the colonic transit time, and so producing watery diarrhea (or exacerbating an existing condition). Although this condition can be treated using bile acid sequestrants (i.e. Questran), it can be difficult to pinpoint it as the cause.
Surgery of the pancreas can also produce effects such as exocrine pancreatic insufficiency which can lead to a malabsorption condition known as steatorrhea which may be confused with diarrhea (although some texts call it a type of diarrhea). It isn’t really diarrhea but it may look like it given the presentation of the faeces and patients may suffer both diarrhea and steatorrhea concurrently. Patients will recognise it in their stools which may be floating, foul-smelling, greasy (oily) and frothy looking. Treatment options will mainly include the use of Pancreatic Enzyme Replacement Therapy or PERT for short (Creon etc).
Many non-surgical treatments can also cause diarrhea, including but not limited to; somatostatin analogues (see below), chemotherapy, biological targeted therapy (e.g. Everolimus, Sunitinib), radiotherapy.
Somatostatin analogues are an interesting one as they are designed to inhibit secretion of particular hormones and peptides by binding to the receptors found on Neuroendocrine tumour cells. This has the knock-on effect of inhibiting digestive/pancreatic enzymes which are necessary to break down the fat in our foods leading to Malabsorption of important nutrients. This may worsen the steatorrhea in pancreatic NET patients but also lead to steatorrhea in others with non-pancreatic locations who have been prescribed these drugs.
Other conditions may actually be the cause of the diarrhea or the treatment for those conditions. For example, it is possible that people actually do have Irritable Bowel Syndrome (IBS). Treatment therapy for common conditions may also be contributing, for example the use of Proton Pump Inhibitors for acid reflux.
Treatment for Syndrome Induced Diarrhea
Like many other NET patients, I’m on a 28 day injection of somatostatin analogues (in my case Lanreotide). Both Octreotide and Lanreotide are designed to reduce the effects of NET syndromes and therefore can often make a difference to syndrome induced diarrhea. These drugs also have anti-tumour effect and so even if you are not syndromic or they do not halt or adequately control syndrome induced diarrhea, they are still a valuable contribution to NET treatment.
Some syndromic patients find they still have diarrhea despite somatostatin analogues and they end up having ‘rescue shots’ or pumps for relief (both of these methods tend to be Octreotide based). (Hopefully they are not getting confused between diarrhea caused by the non-syndrome effects – see above). Some have more frequent injections of the long acting versions of somatostatin analogues which has the effect of increasing the dosage. There’s a new drug available for those whose carcinoid syndrome induced diarrhea is not adequately controlled or perhaps they are unable to have somatostatin analogues as a treatment. Telotristat Ethylworks by inhibiting tryptophan hydroxylase (TPH), a chemical reactor involved in the manufacture of serotonin, which is the main cause of syndrome induced diarrhea. It was approved by the US FDA in February 2017, EU areas in September 2017, and is on the way to being approved elsewhere. Read about this drug here.
Sorting out the symptoms – post diagnosis
I like to describe this as the Neuroendocrine Cancer jigsaw. It’s a really difficult one and sometimes you cannot find a piece, or the pieces won’t fit. However, metaphorically speaking, the missing piece might be a NET specialist presentation, a comment, statement or view from another patient, a link to an article from a reputable source, or even something you do to improve your lot – there might even be trial and error involved. It might even be this blog post!
How do you work out whether diarrhea is caused by a hormone producing tumour or by the side effects of treatments? There’s no easy answer to this as both might be contributing. One crude but logical way is to just accept that if you have normal hormonemarkers, for example 5HIAA (there could be more for other tumour/syndrome types), and you’re not really experiencing any of the other classic symptoms, then your syndrome might be under control due to your treatment (e.g. debulking surgery and/or somatostatin analogues, or another drug). My Oncologist labels me as ‘non-syndromic’ – something which I agree with. I’m 99.999999% sure my issues are as a result of the treatment I’ve had and am receiving.
This disease is so individual and there are many factors involved including the type of syndrome/NET, patient comorbidities and secondary illnesses, consequences of the surgery or treatments performed, side effects of drugs – all of which is intermingled with suspicion and coincidence – it’s that jigsaw again! I always like to look in more detail to understand why certain things might be better than others, I always challenge the ‘status quo’ looking to find a better ‘normal’. I really do think there are different strategies for syndrome induced diarrhea and that which is a result of treatment or a side effect of treatment. There’s also different prices, with inhibitors costing thousands, whilst classic anti-diarrhea treatments are just a few pennies. Adjustments to diets are free!
When I was discharged from hospital after the removal of my small intestinal primary, I was in the toilet A LOT (I was actually in the toilet a lot before I was discharged – check out my primary surgery blogs here) . My surgeon did say it would take months to get back to ‘normal’ – he was right and it did eventually settle – although my new ‘toilet normal’ was soft and loose and several times daily. My previously elevated CgA and 5HIAA were eventually back to normal and my flushing had disappeared. I didn’t have too many issues with diarrhea before diagnosis. Deduction: my issues are most likely not syndrome induced.
I read that many people find basic ‘Loperamide’ (Imodium) helps and I tend to agree with that if you are non syndromic and just need that little bit of help. I decided long time ago I would not become ‘hooked’ and only really take it for two purposes: 1) if I have a bad patch and 2) if I’m going on a long journey (i.e. on a plane perhaps). I estimate I’ve used 4 packets in as many years. Loperamide decreases the activity which causes intestinal motility (peristalsis). This has the effect of increasing the time material stays in the intestine therefore allowing more water to be absorbed from the fecal matter. Ideal for those with a shorter bowel due to surgery and advice from a medical professional is always advisable. To reduce the risk of malabsorption induced diarrhea and steatorrhoea, both of which can lead to loss of valuable nutrients, the use of Pancreatic Enzyme Replacement Therapy (PERT) might need to be introduced as required by your NET specialist.
Have a look at Enterade – the results from trials look good.
Clearly, I cannot offer any professional medical advice on coping with diarrhea, I can only discuss my own situation and what I found worked for me. Don’t forget, like many diseases, what works for one, might not work for another. However, I did tackle my problems following the advice of an experienced dietitian who specialises in NET Cancer. That said, I was ‘sleep walking’ for over 2 years thinking my issues were just part of the way things were after my treatment. I was wrong about that!
As for my own strategy, here’s things that helped me:
made some changes to diet(they were not huge changes),
maintained a diary to help with monitoring progress or setbacks,
hydration is also important (….still working on that one).
started taking PERT (Creon) on 23 Dec 2017 (changed to Nutrizym Feb 2019) but looks reasonably positive so far.
With no fancy and expensive drugs, I’ve gone from 6-8 visits to 1-2 visits (as a daily average, it’s actually 1.5). This didn’t happen overnight though, it took a lot of time and patience. All of this doesn’t mean to say I don’t have issues from time to time …… because I do!
In summary, I think it’s important that people be sure what is actually causing their diarrhea after diagnosis so that the right advice and the optimum treatment can be given.
Listen to Dr Wolin talking about this particular jigsaw puzzle – click here
Also see a nice article that come out of NANETS 2017 – click here
Of course, some people sometimes have the opposite effect but that’s in another blog here – Constipation
“yes, we must do this one day …….” and then we don’t! We’re all guilty of it aren’t we?
For years Chris and I have discussed travelling around the coast of Scotland and we’re just back from a fantastic holiday where we saw some wonderful scenery. And we did the Edinburgh Tattoo on the way there! Yet another ……. “we must do this one day…….”
I’ve even decided that looking at this wonderful scenery is a form of medicine and a way to be inspired to do more. Admittedly we were motivated by the recent declaration of the new “North Coast 500” campaign which fortunately and timely sparked us into gear.
As a patient with incurable cancer, life can be tough on the body and mind. However, I’ve no intention of laying back waiting to shuffle off this mortal coil. As far as I’m concerned that just leads to lethargy and all that goes with it.
Stop talking about it, just go do it!
I don’t do poetry but I thought this quite apt as I stood by a stone monument in the Cairngorms engraved with this on four sides. The orange structures in the picture are places to sit and ‘behold’
Take a moment to behold
As still skies or storms unfold
In sun, rain, sleet or snow
Warm your soul before you go
Thanks for listening
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One of the very first blog posts I wrote was about exercise. Basically I said it was medicine. I have not changed that view, I really believe it. All cancer patients should attempt to keep active and this is even more important if you are being treated for long-term cancer. Why? Because keeping active will not only help your physical condition but it will also help you cope mentally. There are numerous pieces of research which confirm cancer patients are at risk of succumbing to depression and anxiety in addition to issues with their physical condition. Research also indicates that exercise can help.
In my blog “Exercise is Medicine“, I discussed how it had benefitted me when I was in a bit of a rut. I have not looked back since. The positivity you see in some of my blog posts comes partly from the fact that I did something I didn’t think I would ever be able to do again. Moreover, it refocused me on what was really important and it helped me physically and mentally.
Now ….. I did get some feedback from various people claiming they are not able to do any exercise because of their condition. I understand that and I also understand some people will have physical disabilities that prevent them being as mobile as they would like. However, I’ve always emphasised that “exercise” does not mean you need to run a marathon or climb Mount Kilimanjaro; or that you need to do something difficult every single day. If you can actually do that, great! Exercise can also mean simple things such as gardening, walking to the mall or a block or two, lifting some weights, do a couple of press-ups, swim, anything to get your limbs moving. You can start small and then build up to whatever is comfortable and beyond if you then feel sufficiently challenged. The most important thing is to do something and you should feel better after you’ve done it.
“In the past, people being treated for a chronic illness (an illness a person may live with for a long time, like cancer or diabetes) were often told by their doctor to rest and reduce their physical activity. This is good advice if movement causes pain, rapid heart rate, or shortness of breath. But newer research has shown that exercise is not only safe and possible during cancer treatment, but it can improve how well you function physically and your quality of life. Too much rest can lead to loss of body function, muscle weakness, and reduced range of motion. So today, many cancer care teams are urging their patients to be as physically active as possible during cancer treatment. Many people are learning about the advantages of being physically active after treatment, too”.
For Cancer patients, it’s not just about how fast, how high, how heavy, how much…………….. it’s about DIRECTION. Forward is Forward.
In 2014, Chris and I completed the 84-mile route of 2000 year old World Heritage site of ‘Hadrian’s Wall’ in Northern England. Some people saw this is a charity walk and a chance to make some money for a good cause. It was. However, it was MUCH MORE than that. Much much more.
A few months before this trek, I had come to a crossroads and I was unsure which direction to go. That anguish and a thousand other things were contributing to a degradation of my overall health, it felt threatening. I was not that long out of the main treatments for my metastatic Neuroendocrine Cancer and it was still a delicate period as I waited for signs of some stability.
I was getting into some old habits at work (e.g. working long hours) and in hindsight, I can now see that was impacting on my search for normality and stability. However, at the time, it conveniently aided the image of invincibility which was my way of saying “get lost Cancer”. I was reaching out for something I could call normal and for a long time before diagnosis, me working hard was normal! I had always loved a bit of stress but not if it was going to help Neuroendocrine Cancer kill me!
And then boom! – a thyroid lesion is reported. I suddenly realised I had too many balls in the air and I was no longer the expert juggler I was previously. The mask on my poker face was slipping and something needed to change. The thyroid lesion (more on that later) was not the turning point but it was definitely one of a number of signs that I was not invincible, my situation was delicate and I needed to be more proactive on finding the normal I was so desperately seeking. Work was no longer the route I needed to take. To cut a long story short, I decided to retire early BUT in an effort to maintain personal challenges, I set myself some fitness targets which lead to the Hadrian’s Wall walk over 6 days. I actually set up this blog site simply to document the walk and that was the only reason at the time.
Four years later, Lanreotide injections passed the 100 mark, my thyroid lesionis not causing any issues although I have recently been prescribed medication to support my borderline hypothyroidism, I have much less stress in my life and I’m fitter and leaner than I was at diagnosis. I found a new normal and I liked it! Maintaining and improving it is both a physical and mental challenge though.
My Hadrian’s Wall blog was an acorn which has now grown into a nice little Oak tree and I’m truly thankful to everyone for their fantastic support. There’s still plenty tree left to grow
In November 2018, the blog passed three quarter of a million views and I’m on track for the magic one million in summer 2019.
Opinion. Most people with an incurable Cancer will go through both good and bad periods. I quite liked a quote by a fellow patient who described that as the ‘ebb and flow’ of living with cancer and said the flow would always return at some point. I also liked a quote from a fellow blogger whose blog catchphrase is “Having a bad day shouldn’t mean having a bad life”.
Despite my positive sounding blogs and my generally focused and determined nature, I sometimes have bad periods where I feel I’m not coping well living with cancer. I’ve lost count of the number of times I’d planned to do something and then put if off for various reasons. When you live with cancer or long term chronic disease, it can be really easy to become almost permanently inactive and lethargic – that is not a good outcome and I fight hard not to fall into bad routines. Fortunately, my wife Chris (Mrs Motivator) helps me get through some of this.
‘It’s the cancer’– this can sometimes seem like the perfect reason to say ‘I can’t. It’s difficult, particularly if you’re not feeling well or still recovering from treatment. I find it helps if you have someone providing motivation, a partner, a friend or even just by reading an inspiring post. I’ve been contacted by many people who have simply said “I needed to hear that today”. Personally, I’m perked up when I read stories about patients trying to change or improve their outcome (reduce symptoms, increase quality of life), even simple day-to-day things that gives them a little victory, a chance to feel some normality, it all helps. For some it can be a turning point. I do long walks and climb hills just to piss my cancer off – I’m not suggesting you do it (unless you feel capable of course!) but anything which brings some normality and a better quality of life has to be better than nothing.
Sometimes there is a fine line between ‘poker face’ and ‘cancer card’.
“I’m only as good as my last scan”. I received this comment last week in response to one of my posts and I thought it was a very pragmatic thing for someone to say.
A NET patient under surveillance has regular tests at determined intervals but the one that is most likely to spot disease progression, stability or regression is a scan. Markers such as (say) Chromogranin A (CgA) or 5HIAA are clearly useful but in an ongoing surveillance scenario, they alone would not be used as a firm declaration of progression, stability or regression. Every picture tells a story and a scan is normally the confirmation required whether it’s a CT, MRI or PET (etc).
Scans are also important at the diagnostic phase and I’m sure like myself, many people had their first ever scan at this point. You can have many checks, investigations and tests but for most, the scan is normally the main test that is going to confirm the presence of tumours. This then leads to further checks to confirm the staging and grading (i.e. a biopsy) and then hopefully, a proper diagnosis.
I don’t mind scans, they are probably the test that is going to alert my team to anything odd going on. Thus why I don’t mind doing them – in fact, they are a piece of cake!
I recently wrote a blog entitled “Trust me, I’m a Doctor” which was a genuine attempt to say that we should try to work with our Doctors. However, I also covered the issues that Neuroendocrine Tumour (NET) patients face in finding someone who understands their disease and how best to treat it; and that can on occasion lead to issues with doctor-patient relationships and communication. The blog then commented on a number of tips for better doctor-patient relationship and communication. These tips were provided by a Doctor via my friends in Cancer Knowledge Network.
In the blog above, there was an underlying theme indicating certain cancer patients might need to know more about their disease than would be considered normal and that can influence the nature of the doctor-patient relationship. I certainly believe this is the case with NETs and is indeed something evident on most forums. I’ve touched on this subject a few times including a much earlier blog entitled Passive patient or active advocate?As I said in this article, whilst I have a great medical team, I also like to be my own advocate and this means understanding what medical people tell me! I have no intention of becoming a passive patient anytime soon! I realise this is not for everyone but I know some patients have others functioning in this way on their behalf. That’s fine too!
I spotted another excellent discussion article on Cancer Knowledge Network and although the context is patient advocacy at committee level, I thought it applied nicely to many scenarios including the most simple one where a patient decides to learn about their disease in order to better represent themselves at meetings with their nurses, doctors and specialists.
The author, who is both a Doctor and a Patient, describes 5 myths about the usefulness of patients that can sometimes be present within medical circles . I actually believe the patient is the most underused person in healthcare and so I found myself nodding my head to much of what she had to say. Let me know if you were nodding too 🙂
It was wet, windy and very cold and that was at the bottom of the hill I’m looking up at. It wasn’t a terribly big hill but I knew it would need considerable effort and perhaps some temporary pain. Whilst the rain splashed onto our jackets and the wind howled, Chris and I looked at each other and we almost simultaneously said “do we really want to go up that in this weather?” Oh yes ……. no pain, no gain! So we went up the hill and it hurt. Up there, it was wetter, windier and colder! However, the ‘euphoric high’ was worth it. It was like medicine healing the body and mind.
Of course, the ‘hill’ is also a metaphor which might be a number of things from simply venturing outside the house to a full-blown adventurous holiday. It might be a simple bit of gardening, a walk to the shops (mall), 30 minutes on a treadmill at a leisurely pace. Or it might be something more physically demanding like a marathon. It doesn’t even need to be anything physical, for example, starting a diary, trialling a change in diet, learning about specific aspects of your condition. In general, the “hill” is a state of mind and you metaphorically climb it to fight cancer and improve quality of life.
Whatever your ‘hill’ is, two of the common elements required to ‘climb it’ are motivation and willpower. However, if you’re fighting cancer and you’re being affected by the symptoms or the side effects of treatment, it can be easy to opt to stay within your ‘comfort zone’ even though you know the ‘hill‘ might do you some good. I suspect this is a common predicament for a cancer patient, do I ‘climb that hill’ or do I walk away? Sure, I walk away from the “hill” occasionally but I try not to make a habit of it.
My personal hill metaphor is actually a hill but yours can be something else as described above.
One of the most frequent posts on forums is about the Patient-Doctor relationship (or occasionally a lack of it…..). Personally, I have a lot of time and respect for all medical staff and I suspect that has been influenced by my general life experience, perhaps cemented since my diagnosis of metastatic Neuroendocrine Cancer in 2010. The vast majority of people tend to trust Doctors and I’m a bit old-fashioned in this respect. If you have metastatic Neuroendocrine Cancer, you see medical staff a lot! Relationships and communication can therefore become more important than ever.
However, people with less common conditions can perhaps be more difficult to satisfy. A ‘generalist’ doctor (i.e. a GP or PCP) is unlikely to be very knowledgeable about every single condition. Even at secondary care level, certain less common conditions still need dedicated specialists and these services may not be located at every hospital. Clearly with Neuroendocrine Cancer, the optimum scenario is to be treated at a NET specialist centre or at least be overseen by them. However, these can be thin on the ground and/or the medical system in place is not able to provide access to these experts. Geography may also be playing a part causing further anxiety and this is not helpful if you are already fighting cancer. Communications and relationships between patients and doctors can therefore be more difficult even with the right diagnosis.
I see so many issues on forums ranging from people who are simply looking for a specialist to people who still don’t think they got the right treatment from the specialist they eventually found. Emotions directed at physicians range from ‘god-like adulation’ to offers of violence! If you only looked at forums, you would believe there are only a handful of NET Cancer specialists when in fact there are many more than this. Check out the most up to date lists inside this article – click here.
I know from talking to other patients that some have not had the ideal experience with their doctor(s). Even those who found a NET specialist report the odd issue and feelings of unhappiness. I never cite these issues publicly, in particular the hospital or the doctor, because for every one of these stories, you can find dozens of good patient experiences with the same hospital and doctor.
It’s a really complex area and it can be compounded by the health system in place but many things are common across the board. One of the reasons making it complex is that it can be about relationships and communication – both ways! Thus why I was interested to read an article by a physician who listed a number of tips for patients which I think are as relevant to Neuroendocrine Cancer as they are to other conditions (……in fact some more so!). Relationships and communication will not cure or reduce your cancer; or debulk your tumours – well not directly ….. but it can help along the way. And although the article appears to be written in a post diagnosis context, some of it is also relevant to pre-diagnosis.
The top 8 tips are:
Know your own communication style and preference for informing and being informed. This is an interesting point which I hadn’t really thought about. That said, some of the response to this tip can be addressed in some of the other tips. I guess in hindsight, asking my doctors not to hide stuff and to just “hit me with it” is an indication that I had set my preferences early on. I wanted to know the real problems I was facing. Additionally, my Oncologist knows I like copies of all tests and reports and he obliges. I always take notes.
Think about how you prefer to hear important health information such as the results of a biopsy or a scan and then convey that to your doctor or nurse. I think this is partly addressed above. I see my MDT face to face every 6 months but if it is for bad news, I would certainly like some notice in order that I can be accompanied by my wife. I don’t think I’ve made that clear enough so an action for me here.
Prioritize your concerns, if you present your doctor with a very long list of questions or symptoms at the very end of the visit, it’s quite likely that you will both end up frustrated. I have experienced this issue many times but gradually I’ve learned how to improve this form of communication. It’s easy to forget your physician has other patients and only has a finite time to spend on your case. I now send my Oncologist a summary email with my top 3 or 4 concerns and I do this around 2 weeks prior to each appointment. I copy in the specialist nurse who is mostly already aware via frequent communications. This not only gives them some time to read but also prevents the scenario above. It’s starting to work better.
Make your needs known, doctors and nurses cannot read your mind. This is an absolutely key tip as far as I’m concerned. I believe the patient is the most underused person in healthcare. Patients have a part to play in their own diagnosis phase and this continues all the way through to ongoing treatment (including wary of the doctor). Patients must have a voice and patients must use this voice to describe what’s going wrong with their body and what’s troubling their mind. Doctors and nurses cannot read your mind but they must listen to your voice.
Trust the clinicians involved in your care and think of them as partners. I think all clinicians want us to trust them after all they’ve done the 10 years training and we have not! However, with less than common conditions, I suspect patients probably need to be wary and advocate more. I think of myself as a partner (part of the MDT for the period of my consultation) and so by default, I already think this way.
Beware of the common trap of thinking in terms of all or nothing or rushing to conclusions. This is an interesting one for incurable but treatable cancers. I think with incurable Neuroendocrine Cancer, you need to be prepared for a long haul and the occasional bump along the windy road. Services and inspections will need to be done and tyres will need to be changed. It’s not a perfect journey and don’t trust the SatNav!
Share the burden of not knowing how things will ultimately work out. This is a difficult one and I suspect each person will have their own concerns and their own way of dealing with it. I’m thinking this might be more important for younger patients who have young families to look after. I’m a ‘glass half full’ person so it’s an awkward one for me. I guess as I’m feeling confident I’m not leaving anytime soon, it’s something still stuck in the back of my mind.
Find ways of being at ease, even during frightening or turbulent situations. Easier said than done! Again, we all have different ways of dealing with our situations but I do believe if you have addressed all the tips above, this should make it easier. I also think that learning a lot more about your disease really helps to communicate about it better.
I’m often shocked to hear that people ‘fire’ their doctor but I guess if you are paying out of your own pocket, it can be an apt word to use! Clearly if the service you receive is not working to your expectations, then a move might be beneficial for both parties. It’s a big decision though and for those who have moved on, I sincerely hope the grass has been greener on the other side.
The internet is full of blogs and articles about a subject which is described as ‘scanxiety‘ – the joining of the words ‘scan’ and ‘anxiety’. I also noted some authors using the words ‘scanxiety’ and ‘anxiety’ interchangeably which in my opinion is clearly wrong as by definition it is only an anxiety about scans and I guess incorporates the results of scans. Not that we need separate names – at the end of the day, it’s just anxiety regardless of whether it is waiting on the results of a biopsy, blood test, urine test, or anything else related to an illness. No-one goes around saying ‘blood-testxiety’ or ‘biopsyxiety’. Why scans?
‘Scanxiety’ – I just don’t get it ……or more accurately I just don’t get overly anxious about having a scan or getting the results of a scan. Why? Because testing (scans in particular) is the one thing that’s going to keep me alive for as long as possible. I was diagnosed 8 years ago thanks to the trigger of precautionary tests including a scan. I now live with the knowledge (and I accept this fact) that there are still bits of cancer inside me. If I am not regularly tested, there is a chance I will eventually succumb to a serious or irreversible problem which should have been spotted earlier. Even in the event of ‘not so good news’ following a routine surveillance scan, I still see that as a positive because it means the surveillance regime has worked and an investigation can be commenced to more accurately localise and treat the problem. Even if you are in the diagnostic phase and a scan is ordered, you need to get right inside that machine and get it over and done with. It just might save your life.
The test results will be what the test results will be and personally I try to save any worry until I know if I have anything to worry about.
Many cancer patients are under surveillance for a long time and are tested regularly. As an incurable cancer patient myself, I sometimes feel like I’m in a perpetual state of testing. I suspect if I was to let anxiety get the better of me, that would simply lead to other complications I just don’t need. I’m not that insensitive to forget that some people do probably get anxious about actually climbing into a scanner, particularly if they are claustrophobic but that is already a recognised anxiety issue rather than so-called scanxiety. I also suspect people will be anxious about their relatives having scans, particularly the first diagnostic one, worse when young ones are involved and I totally get that. Anxiety (as opposed to so called scanxiety) is a pretty natural reaction. However, to control your fears, you need to face them and then try not to let your anxiety filter down to others. I think people naturally and automatically try to do that without thinking.
‘Scanxiety’ – I just don’t get it. As for the 51,600 search results on the internet, I just don’t get that either!
You may find my 7 tips for conquering fear useful – read here.
Thanks for reading
You may also enjoy my article “10 Questions to ask your Doctor” – click here.
Every now and then I see a positive story during my travels around the internet. When I saw this one from K**** in Pennsylvania, I had to share. If you’re feeling a little bit down and need cheering up, dig out this blog and take a read 🙂
“I began my Carcinoid journey about 7 years ago, newly married to a wonderful man and his daughter at the age of 43. I was also newly retired (from CPA and also Large Animal/Equine Surgical Veterinary Assistant) and was looking forward to a nice, peaceful, fun, loooong life.
But, things get in the way and can get bumpy – cancer, being one of them (and a now, 16yo hormonal female teenager). I took my diagnosis, thought about it for awhile, hung out on the sofa…ate a few bonbons and then, pulled my head out of my a**. I went back to work as a Patient Care Assistant at our local hospital (feeling the need to go “medical career” again), trying to figure out what to do next – needing to get my outrageous health insurance premium off my husband’s back. I was pissed, I had to go back to work, I had CANCER, for God’s sake – I should be looking into disability or anything that will bear this burden – but, I was well enough to bear it myself.
Continued to pull my head out of my a** and decided to pursue a career as a Registered Nurse, knowing that I, at the ripe age of (now) 53, still had a whole boatload of stuff to offer. So, 4 years ago, I strapped my pump (yes, I’m a “pumper”) and my ‘kahoonas’ on and I went back to school full-time, working part-time, raised my hormonal daughter, rode my (new) gloriously wonderful old Off the Track, Thoroughbred “Gryphon”, got my Harleys back out and got my game on.
Yesterday, I sat for the Pennsylvania State Nursing Board test and today….I found out that I PASSED! I am now officially, K**** ******** RN
If you’ve got the health (screw that diagnosis) and you’ve got the need to make a change – MAKE IT and make it count! As of 15 minutes ago…I applied for an Oncology Nurse position 🙂 “
It’s good to be busy, it can take your mind off stuff you don’t really want to think about. That was my tactic after being diagnosed with incurable Neuroendocrine Cancer. I just kept working and working and was still sending work emails and making telephone calls on the day I was being admitted to hospital for major surgery. After all, how could they possibly function without me? Although I was banned from work after the surgery, I still dropped an email to let them know I was doing cartwheels down the hospital corridor. They expected nothing less.
I guess the image of ‘invincibility’ was important to me at that time. It was part of my personal expectations and credibility. Some 6 weeks after leaving hospital following a 9 hour open surgery, I literally crawled back to the office, weak and drawn but determined to ‘make a statement’ by dint of my physical presence. A round of applause was given and for me this was as effective as any medicine I was taking. My credibility was intact.
Treatment, tests and consultations would now be managed around work instead of the other way – after all, they couldn’t possibly function without me? This ‘charade’ went on for some time until I eventually realised they could actually function without me and the only person expecting me to be ‘in service‘ on a treatment, testing or consultation day, was me. Additionally, it became patently obvious that people would totally understand my reasons for slowing down. However, a more serious message was being received from my body which was hinting it was more delicate than I had thought. My credibility, until hitherto sacrosanct, was taking its toll and things weren’t really back to normal. I began to realise I needed a different and better ‘normal‘.
After my ‘eureka’ moment, I totally changed my lifestyle putting my health above my credibility in the ‘pecking order’. I still keep busy – that’s important. I’m now happily doing things I enjoy at my own pace and my fatigue levels are now under control. Here’s my 5 top suggestions for prioritising your time and activities to be able to live with an incurable cancer.
Reduce your stress. This is difficult with the modern life we now lead but if you can live without things that cause you stress – cease or drastically reduce their effect on you and boldness might be required to strike the right balance.
Quality sleep. If your illness has a fatigue element, a decent night’s sleep becomes more important. Get into a routine if possible.
Take time to exercise. It doesn’t need to be a marathon or a climb up Mt Everest. Even a regular short walk is enough and you can build up from there. This also helps with the sleep, fatigue and stress reduction.
Learn to say no more often. This is difficult, particularly if you are the energetic multi-tasking go-getter type but your body has a voice – listen to it.
Do more of the things you enjoy. We’re all guilty of procrastination from time to time but get more of the things you enjoy into your calendar, it supports all the other suggestions above!
I now have a new ‘normal’ and I feel healthier and more positive. I sometimes think I might be taking on too much leading to a return to the ‘old ways’. However, the big difference today is that I have no qualms about taking myself ‘out of service‘ or reducing my workload and commitments. My body tends to remind me now and then.
Withincurable but treatable cancers such as metastatic Neuroendocrine Cancer, ‘Stable‘ is normally not the end of the matter, for many there is still a long road ahead and that road may not be straight or flat. The long road may be considered an advantage by some given that with very aggressive cancers, incurable can frequently mean terminal. The surveillance must continue in case of a recurrence.
It’s important to understand that ‘Stable‘ simply means the disease is “under control” with tests and scans showing the cancer hasn’t changed over time.
One of the disadvantages of ‘incurable but treatable‘ is that Quality of Life (QoL) can in many cases be compromised due to the consequences of cancer and /or treatment. However, if specialist treatment, surveillance and support are all in place, things can gradually be adjusted to a new and hopefully tolerable ‘normal’.
I also believe patient expectations need to be managed although improvements are still possible. In my own experience, however, this does not happen overnight. Patients must be willing to accept a new normal or status quo on the basis that things are never likely to be the same again. Many patients with chronic conditions will have minor irritants and Neuroendocrine Cancer patients are no exception in this regard.
HOWEVER …….. The specialist view of ‘stable’ will be looking at tumour and hormone makers. The patient is likely to have a much wider view of ‘stable’ and it will include ‘quality of life’ markers.
So ….what is stable for me?
Looking at my medical documents, I was not really considered ‘stable’ by specialists until 2 years after diagnosis. The measure of that is in scans and markers. Nothing has grown since 2012 although I have a thyroid lesionbeing tracked on watch and wait. My key NET markers have been solidly in range since 2012. Today, my on-going monthly treatments are well organised, I’m in touch with my specialists and undergo several surveillance checks beforehand every 6 months currently. I get regular/normal illnesses and those are logged in my diary to look for any clues or associations with anything else. In between consultations, I can call in for urgent help if need be. Irregularities of concern to my ‘stability’ are checked, referred to other specialists if necessary and treated. I feel well, I look well (but you should see my insides ….). I think I’m on top of things.
I think the UK (for example) is very well serviced with district NET Centres across the country each with specialists in Neuroendocrine Cancer and most include a dedicated NET Specialist Nurse – some areas are better served than others. In my opinion, NET Nurses can prove invaluable in on-going care scenarios. In fact, I was very pleased to see a NET Nurse attending and taking a greater role in my most recent MDT meetings. I’m fairly certain other countries have similar setups. Some countries may not be so fortunate and are struggling to get the right resources – I can see this on one or two ‘corporate’ Facebook and Twitter sites. Specialist NET Nurses are an extremely valuable commodity – they do brilliant work and we probably need more! The same could be said for NET Specialist Dietitians who are key to providing quality of life improvements. In fact, I was delighted to see this recommendation at ENETS 2018 in Barcelona.
OK … I may be stable (ish) but I still need support!
However ……. my stability does NOT mean I’m complacent. For minor issues, it’s always useful to talk to a medical professional, even on the telephone. I think of my GP (PCP) as a ‘virtual’ member of my Multi-Disciplinary Team (MDT) and I copy them into any important correspondence between myself and my Oncologist. They are normally copied in coming the other way (if not I make sure they are). This is starting to return dividends. Whilst my GP is positioned to deal with most of my ‘irritants’, I still believe specialist assistance is required for many NET Cancer problems or any problem where there is potentially an overlap or risk of a connection. Being your own advocate is useful in these scenarios. Patient-doctorcommunicationis vital and I find it best to drive this myself. I’m lucky to have direct ‘as and when’ contact a specialist NET Nurse. All NET patients should have the same.
The best advocate for you is YOU (or someone very close to you)
Although I still need constant surveillance, being stable allows me to focus on QoL and in particular trying to improve on my ‘normal’. Whilst we are on that subject, did you hear the one about the constipated NET patient? This article contains a summary of my attempts to gain a decent quality of life.
Although I read patient forums, I don’t necessarily rely on them a lot for my own issues. On sporadic one-off forum questions (…..and not forgetting that hundreds of symptom questions are related to ‘the gut’), the discussions can end up with many different and confusing answers. Plus there are so many patients who are at varying stages of their disease, use different types of healthcare systems, have had different treatments and have different types of NET, have other issues going on, it can end up as a tangled mess as people try to compare apples with pears. To help with this issue, I created my own private Facebook group and I try to emphasise these issues through moderation.
I like to do my own research as I want to be in control of my own QoL. One of the most troublesome QoL issues for patients is diet and the digestive system generally (i.e.managing the gut). For many NET patients, particularly those who have had surgery and/or persisting syndrome, diet and nutrition is a huge challenge as it can very often mimic other problems which can present with a wide range of ‘syndrome like’ symptoms such as fatigue, weight issues and even anxiety. More somatostatin analogues and other drugs might just be the wrong response in certain scenarios. I feel there is a huge gap in the follow-up treatment for people who suffer this as a consequence of their cancer. For example, and to the best of my knowledge, there is only a few dedicated and practicing Neuroendocrine specialist dietician in the whole of the UK (…..I’m willing to be corrected here). Some of you might be thinking that any dietician should be able to help? Although you would be correct to a certain extent, I personally do not believe this is the best or optimum solution. There are very specific issues with NET Cancer patients that are bespoke and complex to the point that conventional cancer diet practices may not fully apply. It’s not just about what you eat………..
NET Cancer patients need specialist dietary advice covering the whole spectrum from diet itself to the use of supplements where required, post-surgical advice, managing the long-term side effects of treatment, combatting and treating malabsorption and nutrient deficiencies caused by the complexities of their cancer or the consequences of their treatment. Personally, I think more resources and research in this area would be useful.
This gap is one of the reasons why I asked Tara Whyand (a dietician with specialist Neuroendocrine Cancer knowledge) to help me co-author a series of blogs to focus in on a few key areas. I didn’t want to say what someone should or should not do, I wanted to say why this is an area to watch. The ‘why‘ is important as it helps you in your efforts to distinguish the effects of a syndrome or a co-morbidity from the effects of your treatment (if applicable). I find this knowledge helps me to think ‘outside the box’ rather than just accepting ‘it’s the syndrome‘. I personally feel I’ve been able to harness this knowledge to improve my QoL.
When I was diagnosed, I was happy with my own research and kept away from forums on the advice of a fellow patient who said they can be negative. Just before my second major operation in 2011, I decided to take the plunge and registered with an online web forum (not a Facebook one). Looking back to that period, I wasn’t really a major player, more of a ‘lurker’. I found it quite ‘cliquey’ and I should have listened to the initial advice of that fellow patient! So I left it.
In 2013, I joined several large Facebook closed groups which function as forums. After 4 years, I felt more experienced and knowledgeable and I wanted to learn more about the disease to help with my blog activity.
I really was not prepared for what I found in these groups. It seemed many people were in a much worse condition than me (I now know this to be incorrect) and I was shocked by some of the things I read (and saw) and I considered leaving pretty sharpish – quite frankly, the content of these forums was stressing me out!
Remember, forums don’t represent the whole NET Patient population
It suddenly became obvious to me that the actual ratios found on forum sites do not equate on the outside, i.e. even on the bigger forums of 2000+ this is not a good representation of the NET patient community when you consider there must be well over 500,000 patients worldwide. For example, on forums, it often appears that everyone has some form of ‘syndrome‘ when in actual fact the ratios are much much lower. If you agree with the logic above, this forum ratio of patients is a particularly relevant point for new forum members who, upon joining, will suddenly find that every symptom in existence seems to be continuously (and repeatedly) associated with the disease, causing further distress. If you think about it, on a forum, more people are likely to say “yes I have that problem” than “no I don’t have that problem” in response to any question. Regardless of how bizarre or outlandish the question is, someone will nearly always respond saying they also have that issue ……. cue epidemic. This can unfortunately make it seem more prevalent than it actually is. Perhaps more patients should say “no, not me” to prevent these frequent perceptions and misunderstandings.
Diagnosing the Undiagnosed
There are also many ‘undiagnosed‘ people on forums searching for clues for their long-standing illnesses. This isn’t surprising as Neuroendocrine Cancers are notoriously misdiagnosed as routine ailments, in some cases for years. I guess the ‘power of the internet’ leads these people to forums. These cases tend to come and go and you can almost sense the frustration of those who believe they have NETs but are not yet medically diagnosed with any illness. I really feel for someone with any illness that cannot be pinned down. I feel helpless that I’m unable to wave a magic wand. However, I can’t help feeling that some might be convincing themselves they have Neuroendocrine Cancer by what they read, or perhaps have even been nudged (further) into this belief by their well-meaning audiences who, like me, are simply trying to help? Only my opinion.
Be prepared for different opinions
If you want a very wide-ranging set of opinions on very basic NET information – join a forum. Nothing is a myth, everything is possible, even the seemingly impossible. Much of this misinformation starts on forums, tne spreads to other forums and the anecdotal takes over from fact. As difficult as it may seem, moderators and experienced/knowledgeable members need to correct blatantly incorrect statements to maintain group integrity and educational aims (where applicable).
Be prepared for fake healthcare news, celebrity fad diets, miracles cures
Social media including patient forums is a targeted medium for those who wish to spread fake, unscientifically proven, believable and solicited news and articles, in many cases to sell a product, i.e. a book, a video, a celebrity diet or product. Some of this information may result in harm to some patients. Very often, administrators of forums lack the knowledge and initiative to prevent these posts making it to their communities. In many cases, this (mis)information will be shared by another patient or family member who may just be well-meaning but has fallen for the trap set by the purveyor of this clap-trap. This can lead to great upset or fear for those already in a delicate state. Check out my 3 articles on the subject:
A much discussed topic and sometimes not for the very squeamish. I’ve seen some unusual pictures on forums but the worst by far was one of someone’s faeces. I struggled to understand why anyone would post that – moreover, I was amazed the site administrators allowed it. No thank you!
Be prepared for religious conversations
There is a lot of spiritual and religious content on certain forum sites. I’m not a religious person but I totally respect that many people are. However, on some forums, there can be a very heavy religious and spiritual message presence. This may not be everyone’s ‘cup of tea’, particularly if it consistently overrides the main aims of the group.
Be prepared for strange behaviours
One of the most hideous aspects of forums is the appearance of ‘on-line bullying’ or arguments which happen now and then. Be prepared to see disagreements and many ‘one to ones’ or ‘one to manys’. However, definition is important here. Cliques of core users can appear overpowering particularly when someone disagrees with one of the ‘clique’. All this is going to do is to drive people away and make people more reluctant to ask or answer a question for fear of upsetting someone or being ridiculed. The vast majority of forums I’ve experienced, have little or no moderation and inadequate or untimely policing. A well-administered site will deal with it quickly and have round the clock moderation given the international nature of many forums. Administrators need to stamp on this sort of behaviour when it happens and not 48 hours after the event. I once left a forum after very politely suggesting a different opinion to the ‘reigning clique’ which resulted in a coordinated and personal tirade against me (i.e. online bullying). The posts were removed, indicating the administrators agreed with my complaint. My advice is not to join an unmoderated forum, and if you see this type of issue and sense they are not being resolved, you should consider leaving that forum to prevent unnecessary stress. In another but different example of bullying, I was blocked from one US site without notice or reason and to this day I have never found out why, despite trying very hard (…..although I suspect ‘politics’).
Be prepared for masses of ‘tat’
Another area which puts me off most NET forums is the masses of ‘memes’, pictures, quotes, miracle ‘snake oil’ cures/medical myths and stuff you see plastered all over the internet – these things are the ‘junk mail/spam’ equivalent on Facebook and some can also be a security problem. I’m very surprised the administrators allow so many of them as they clog up the timeline making it easy to miss an important post and they can present security risks for those who click on them. I get enough of this on my personal Facebook – no thanks!
Be prepared for masses of black and white striped stuff
I don’t do zebras, I’d rather talk with people and the things that actually matter to those people. I therefore find myself strongly objecting to being described as a ‘Zebra’ and part of a ‘herd’. As soon as I sense a ‘zebra infested’ site, I’m off straight away. The NET community sometimes appears so infatuated by this aged, out of date, and misleading analogy, that it denies the correct level of support to those who are asking for help. For example, side by side, a post (say) where someone is asking about side effects of a treatment or how to improve quality of life, or someone just asking for help, is likely to get much less views/likes/comments than a picture of a Zebra or something with stripes …… quite simply, that is not right and is why I won’t allow it in my own group.
The strange thing is that in contextual terms, the zebra represents the disease, so when someone says “I am a zebra”, this is in effect saying “I am a disease” or when they say “Dear Zebras” they are saying “Dear Diseases” or my pet hate, the cringeworthy “Dear Fellow Diseases”. The problem is that the NET community has become “too cute” with the term and it now lacks any ‘kerb appeal’ to the outside world (who should be the key recipients of awareness messages). It’s really holding back NET Cancer external awareness and is a PR disaster area. Even NET specialists are denouncing this infatuation, with one saying “we’re beyond that now”.
I have my own strategy for spreading awareness which seems to be well received and more understandable to EXTERNAL audiences and many NET patients. Moreover, my awareness strategy covers a much bigger spectrum than offered by the narrow and blinkered diagnostic messages inferred by this aged, totally useless and often misquoted equine analogy. I say Let’s stop dehumanising NET patients.
I’ve recently cut down my membership of groups, not only because they were not a good fit for me but because forums were actually stressing me out, mostly due to all the issues outlined above. So, I’ve left most groups, remaining in those which fit my requirements. I advise you to do similar if you value your sanity.
Are forums ‘frighteningly good’?
There can be a lot of positive outputs from many forums and to be truthful, I have learned a lot and made some online friends too. I’m sure the forums are very useful for some people who are able to prioritise and filter to take what they want from the sites. Some people also use them as a lifeline due to a lack of support in their local area. In that respect, they are frighteningly good.
Are forums good at ‘frightening’?
Yes, they can be good at frightening for those already in an anxious or delicate state or who want to discuss issues in a slow, deliberate and non-confrontational manner without being inundated with tat, myths, abuse, etc as per above. I like to help people but for the first couple of months after joining forums in 2013, I found myself feeling totally helpless with the sheer number and range of problems. Unfortunately, well-meaning people give totally different and dangerously conflicting answers, even to simple questions. I was also deeply concerned that ‘miracle cures’ which I knew to be internet myths were not challenged by the group administrators.
I ended up very frustrated even though I learned to prioritise and filter – I just felt bad that the questioner was getting no answer (50 different answers is no answer) or the fundamentally wrong answer. It also infuriates me to see a pathetic response to a cry for help right next to 100 likes for someone’s zebra coloured fingernails.
I now receive dozens of messages/emails every week but I find myself increasingly hesitant to recommend people I don’t know too much about to certain forums. Don’t get me wrong, I think some forum sites do a great job but they can be pretty frightening places for the unwary (and on occasion…. the wary!).
Thanks for reading
Please note, since writing this article, I have established my own group and my aim is to minimise the issues above as much as possible in order to focus on education with a supporting slant. You can join my group by answering 2 simple questions. Click here
Certain popular ideas about how cancer starts and spreads – though scientifically wrong, can seem to make sense, especially when those ideas are rooted in old theories. To a certain extent, it can be the case with treatment too. But wrong ideas about cancer can lead to needless worry and even hinder good prevention and treatment decisions.
In a study published last month, a surprising 40% of Americans believe cancer can be cured solely through alternative therapies, according to the American Society of Clinical Oncology (ASCO)’s second annual National Cancer Opinion Survey. In a similar study in UK, the NHS blamed social media for the spread of fake healthcare news. Unfortunately social media ‘misinformation’ includes ‘alleged’ cures for various ailments including cancer. I think we’ve all been there, we check twitter, Facebook, Pinterest etc and we find the ubiquitous miracle cures for every illness under the sun. Easy to find, easy to read and worryingly, easy to share. Surely these cures must be true, after all…..it’s on the ‘NET’.
Has wide access to the internet exacerbated this problem?
The rise of the (Inter)NET has allowed people to use ‘social technology’ to help shape the world’s events and culture. Additionally, the NET has increased the speed of how relationships develop, the way information is shared and (whether you like it or not) how influence can be leveraged for gain. Facebook has taught us new ways to communicate and collaborate through features like feeds, profiles and groups. At the same time, smartphones and tablets provide mobile and instantaneous access to information from any location. Whether you like it or not, we are witnessing the power of social media and its effect on society. However, the ‘NET’ can also provide ‘misinformation’ and it’s pretty good at it.
When I was diagnosed with metastatic Neuroendocrine Tumours (aka ‘NETs’) in 2010, I took to the ‘NET’ to find out about my ‘NETs’ 🙂 However, I soon found out the NET is potentially more dangerous than my NETs. Put a foot in the wrong place and ‘boom’. Not only can you get easily lost but you end up with dubious information which looks pretty credible. Moreover, in some cases this can be unnecessarily stressful and upsetting for some. Fortunately I had worked with information technology for years and combined with my sceptical but inquisitive nature, I was able to overcome this problem. I’m very careful where I look and now use that to my advantage, along with many other savvy cancer patients.
The champion ‘myth busters’ are the world-renowned Cancer Research UK and I always go there when I see something in the media which sounds too good to be true. For example, there is a 20 year old myth that sugar feeds cancer cells and this seems to be shared by many patients as something which looks true. It is NOT true and the biggest cancer advocate organisations will all confirm this. Although research has shown that cancer cells consume more sugar (glucose) than normal cells, no studies have shown that eating sugar will make your cancer worse or that, if you stop eating sugar, your cancer will shrink or disappear. However, a high-sugar diet may contribute to excess weight gain, and obesity is associated with an increased risk of developing several types of cancer – that is a totally different problem. This is one of a number of cancer myths that seem to continuously patrol the NET, including on patient forums. Take a look at Cancer Research UK’s‘Don’t believe the hype – 10 cancer myths debunked’. Whilst you’re there, take a look at their Science blog as they always follow up the most recent headline grabbing newspaper articles claiming to have found the cure for cancer (again). Cancer Research UK will always provide balanced commentary on these claims.
Cancer Research UK is not alone in trying to help dispel some of these myths – you can also fact check on the big US site Cancer.Gov – see their myth busting article here.
I also like the list from Cancer.NET – American Society of Clinical Oncology (ASCO) – read it here. (Science Fact or Science Fiction)
I suspect we all know exercise is good for us but it does sometimes take quite a bit of effort to get out there and do some! Apparently the older you get, the harder it becomes (I can confirm this is true!). I did write about this in 2014 (Exercise – it’s a free prescription). In fact, my blog was actually created to document my return to fitness and good health 12 months ago!
I was prompted to write this blog after discovering a piece of advice for NET Cancer patients, specifically those with carcinoid syndrome. The advice is one of those catchy ‘single letter’ lists called the “5 E’s” of things to avoid – one of which is ‘Exercise’. Clearly ‘Exercise’ needs putting into some context as everybody needs to do some even if it’s only a walk to the shops or some gardening.
There is a lot to be said for cancer patients to do some form of exercise and I know from my own experience, and from some really good on-line evidence, that it does have excellent medicinal value. For example, it can keep your weight in check, makes you stronger and keeps you feeling youthful (mind over matteris also a good thing!). Can exercise can make you a happier person? I think so. Last year, my wife and I committed to an 84 mile trek along Hadrian’s Wall in North England and we spent 3-4 months preparing. I was very thankful to her for continuously dragging my butt out of bed and into the forest close-by. During this period, we both felt less stressed out, less anxious, we slept better and we were generally happier. I suspect there is some scientific evidence about why this happens i.e. exercise releases ‘happy chemicals’ into/interacting with your brain, mostly ‘Dopamine’ and ‘Endorphins’.
In my own case, I’m currently non-syndromic since major surgery and monthly injections of Lanreotide. I therefore suspect the risk of exercise causing me problems is pretty low. In any event, I’m unlikely to indulge in anything really strenuous! I also know many NET patients who exercise frequently. However, I know from reading on-line forums that many people suffer from varying degrees of carcinoid syndrome and I suspect the advice is directed to those who may be more at risk. That said, I still believe most people would benefit from some exercise and this is something their doctors might advise on.
Exercise safely people. I’m off for a long walk 🙂
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When I started blogging in 2014, it was relatively easy – all I needed to do was to talk about my experience to help raise awareness of Neuroendocrine Cancer; then talk about my hike along Hadrian’s Wall for a local Charity. The blog was only ever intended to be a temporary supporting tool for the walk and its build up; but I was persuaded by good reviews and viewing numbers to keep it going. That suddenly made it more difficult!
In my early blogs, there were several ‘no go areas’ which were either too complex or potentially controversial. I didn’t really have much time to think them through properly at that point in time. However, I’ve since dabbled in some of these areas to test the waters. I’m not a healthcare professional of any sort so I can only talk about my own experiences and how I made improvements to my own issues. Since then;
I suggested that exercise can help – it’s not about how high, how fast, how long, it’s about direction, about going forward;
I suggested that diet and nutrition support can help. Not just about what to eat, also about ensuring you are getting the minimum levels of nutrition into your body.
Clearly there are many other issues involved including but not limited to social support, comorbidities, pain control.
It’s no secret that a cancer patient’s problems can at times go beyond the physical, i.e. the mind can also be affected. My research indicates that any cancer patient is at risk of succumbing to depression and anxiety with one study indicating it could be as high as 40% with an equal split between clinical depression and subclinical depression. The latter is an interesting condition as it’s not as severe as the former but can last much longer. I suspect if I dug deeper, I would find there are other factors at play including (but not limited to) geography, socio-economic and gender. It’s also worth noting that these issues can also affect someone who is living with, or caring for, a cancer patient.
It would appear that studies into depression and anxiety in cancer patients have been a challenge because symptoms occur on a broad spectrum ranging from sadness to major affective disorders and because mood change is often difficult to evaluate when a patient is worried about death, is receiving cancer treatments, is fatigued or is experiencing pain. Living with cancer or depression can be hard (I can vouch for the former) – battling both together must be more difficult. According to Cancer Research UK (one of the biggest and respected names in Cancer), depression and anxiety issues are an important but largely under-recognised problem for people with cancer. Read more by clicking here. And if you listed the unmet needs for NETs, psychological problems would certainly be on the list.
Many people still see a cancer diagnosis as a death sentence but improvements in medical science has meant that fewer people now die of cancer (although certain cancers are still struggling, e.g. Pancreatic). If fewer people are dying of cancer, it clearly indicates that more people are now either living with their cancer or going into remission? The latter is indeed very good news and will have impacted the survival figures greatly.
However, some incurable cancers can also have a good prognosis or outlook despite their ability to put a dent in Quality of Life (QoL). These cancers can provide physical and mental challenges to patients who are living with both the side effects of the cancer and the (lifelong) treatment. One such type is Neuroendocrine Cancer, sometimes known as ‘the silent cancer‘or ‘cancer in slow motion‘ in respect the well differentiated versions. In prognostic terms, there are worse cancers out there, even patients with metastatic disease can have good prognostic outcomes and live fairly normal lives with the right treatment. But each person is different and there can sometimes be a varying cost in terms of quality of life and risk of patients succumbing to depression and anxiety issues. Many people not only live with Cancer but they also live with the consequences of Cancer.
As a Neuroendocrine Cancer patient, I have at times felt like my mind wasn’t coping very well despite a healthy and happy outlook – not forgetting that I look so well 🙂 I’m good at bottling things up so it’s easy for me to put on a façade. However, I’ve always managed to give myself a proverbial ‘kick up the backside’ if I feel a drop in my levels of focus and determination. It’s too easy to be constantly fearfuland blame every single ache and pain on my cancer (because most of the time it turns out not to be) – this just increases the fear. I’m generally a POKER FACE type of guy and some might say that is dangerous! However, I’m not complacent nor am I in any form of denial. One of the key reasons why I study my disease in some detail and work with my medical team prompting them as my own advocate where I think there is a strong connection, is so that I don’t become complacent whilst at the same time I don’t automatically assume any aches and pains are caused by the cancer. NET Cancer needs an element of pragmatism now and then! I also think exercise and nutrition can help body and mind – thus why I listed those factors above.
Does mind over matter help? I don’t believe a positive attitude helps cure any condition but I believe it can be helpful for anyone with cancer including those living with incurable diseases such as Neuroendocrine Cancer.
I’ll have Neuroendocrine Cancer forever – I cannot change that, so I’ll just have to deal with it. Quality of life is therefore important – I need to work to maintain and improve where possible.
If you think your psychological issues are unmanageable, I strongly encourage you to talk with your doctor or a counsellor. In fact, you may appreciate this excellent videofrom NET Patient Foundation presented by Kym Winter helpful. She is a qualified Psychotherapist and Counsellor – click here.
I also liked this videoby Dr Michael Burke, a Psychiatric Oncologist – click here
You may also enjoy my article “8 tips for conquering fear” which is written by a patient for patients and also features both the above videos.
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Most people have probably heard of the saying “is your glass half empty or half full”. If you said ‘half empty’, you have more of a pessimistic view on life; if you said ‘half full’, you tend to have more of an optimistic or positive outlook.
I don’t think a positive outlook actually means you permanently wear ‘rose tinted glasses’ and act like everything is fine. I think it just means you approach potentially negative situations in a more positive and productive way. I agree that sometimes it’s hard not to veer into negative thoughts or actions from time to time. I’m only human and I’ve been in some dark places in the last 5 years since diagnosis. However, I believe to continuously be in ‘half empty mode’ can have a detrimental effect on your health, both physical and mental.
When I was first diagnosed with Neuroendocrine Cancer in 2010, I experienced a whole range of emotions from shock and denial, disbelief and anger followed by grudging acceptance. However, those emotions were quickly followed by what I can only describe as determination, tenacity, strength and rock-solid willpower to face what was in front of me. I cracked on with work as if nothing had happened with only a select few knowing my issue – that was the way I wanted it. I was very much in glass ‘half full mode’. The work took my mind off the cancer whilst I was put through an extraordinary amount of tests and pre-surgical treatment (Neuroendocrine Cancer/Carcinoid patients will understand what I mean). Eventually, I had taken so much time off for tests and treatment, my secret was out. I was about to embark on major surgery and potentially months off work, so the secret had to be exposed in any case. I’m not sure what worried me most, the fact that I had cancer; or that people now knew the invincible Ronny Allan was not superman after all 🙂
Since then I have made it my mission to keep my mind busy and to stay positive despite having something which is not curable. That’s not to say I don’t have bad periods and I’m 100% physically and mentally coping. As I said above, a glass half full outlook means you can approach potentially negative situations in a more positive and productive way. In fact, that strategy was used to lift me from a low point in 2013 to the declaration of a ‘new normal‘.
Like many other Neuroendocrine Cancer patients, I have numerous side effects of both the cancer and the treatment. As an incurable cancer patient, I need to keep an eye on my mind as well as my body. As a 60-year-old, I also have numerous aches, pains and ailments that most people of this age tend to suffer from and it would be very easy to automatically tie all of these in with my cancer. So I don’t.
That’s not to say I’ve become complacent. Far from it, I investigate issues in some depth and follow them up with primary and/or secondary care until I’m satisfied. Additionally, I’ve spoken with quite a few Neuroendocrine Cancer patients and I try to find out how they cope, how they get by. I also do this by reading the blogs or websites of cancer patients and if I feel inspired, I will follow their blog or subscribe to their site.
I don’t rely too much on patient forums for my ‘close support’. Some people tell me they completely avoid forums as they found them too negative and depressing. I know what they mean and at times I’ve been tempted to disengage from all sites. However, I’m conscious that some people are very worried about their condition, particularly during the diagnostic phase or pre-treatment, so I guess there are perceptions at play. As a 5 year survivor, I’ve since learned to filter out or at least try to understand someone’s concerns and I always attempt to inject some positivity and hope into any thread. That said, I’m now more of a ‘forum lurker’ and as some of them can be ‘minefields’, I’ve really cut down my presence.
In my blogs, I’m conscious that my own personal experience is not universal and I would never dream of suggesting that my opinions be substituted for someone else’s. However, I hope that for some people, they can relate to what I have said and take comfort from the fact that there can be light at the end of the tunnel even if it currently looks some distance away!
Finally, I am a strong believer that having a positive attitude is potentially life extending for a cancer patient. Therefore …… my glass is half full.
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Ronny Allan – Living with Neuroendocrine Cancer!
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When planning to walk Hadrian’s Wall in the north of England in 2014, I carried out a number of risk assessments (as all good Project Managers do!). In true ‘Donald Rumsfeld style’, I considered all the ‘known unknowns’ and the ‘unknown unknowns’ 🙂 Anybody who doesn’t is either reckless or supremely confident (the latter can sometimes be the same as the former……).
As a Cancer patient, there were some issues I had to consider which might not have made the list for most walkers covering this sort of distance and this type of terrain. One of the issues I occasionally experience is stomach cramps, not that frequent but problematic and quite painful when they occur. If you’ve had abdominal surgery, you might be having to deal with issue. Many Neuroendocrine Tumour (NET) patients also suffer these cramps, often due to something called ‘Carcinoid Syndrome’ or simply as a side effect of treatment. This syndrome has symptoms including (amongst others):
Dizziness due to blood pressure that may go up or down – this can be triggered by having an anaesthetic.
For me, it was mainly the flushing – in fact this was instrumental in confirming my diagnosis. However, in hindsight some other issues might have been masked by routine/’run of the mill’ illnesses a couple of years prior to being diagnosed with Cancer.
I’m not particularly ‘syndromic’ at the moment due to my monthly treatment and debulking surgery. However, I do occasionally have to deal with ‘stomach cramps’ (a term which tends to mean the whole abdominal area). Fortunately, they are not that frequent. I might not have a stomach cramp for weeks and then suffer a couple of times in a single week. Consequently, after each attack, I study my activities, my medicine and my diet trying to figure out if there is anything I can avoid to prevent this happening. I now maintain a daily diary to assist. Footnote from 2018, I don’t seem to have them as regular as I used to.
I think most people will have experienced stomach cramps at some point in their lives and those who have will agree it’s not nice. I’ve had some really painful episodes in the last 2 years and as is usually the case, it’s helped by visiting the toilet/bathroom. Getting there can be painful as I sometimes find any movement exacerbates the pain with the worst attacks.
You can now see why I listed this as a key risk in walking the 84 miles of Hadrian’s Wall! You might be excused for thinking there shouldn’t be a problem with all that countryside available? Add the openness of the area; add the constant stream of walkers in both directions and the sum = not much privacy! As an ex-soldier and a male, I’m used to using ‘natural’ toilets or at best temporary structures. I ‘googled’ to check the availability of toilets along Hadrian’s Wall to find they are few and far between.
I do have a special card which I keep in my wallet but it’s not much use out in the hills! I’ve actually never had to use this card ‘in anger’ but I came very close to using it on Day 5 of this 6 day walk. I was suffering quite a lot of pain for a good mile or so on the outskirts of Carlisle which was semi-urban. I walked past a dozen houses but my pride would not let me use the card – silly boy! There was no way I was going to do a ‘Paula Radcliffe’. Things were coming to a head as we approached a bridge with a small copse over a tributary of the River Eden. At last some cover!
The final leg of the walk took us from beautiful Carlisle to the remote coast of North Cumbria at Bowness-on-Solway. We are staying there tonight before beginning our journey home tomorrow (via Newcastle). Amazingly our digs have a wicked view of the Scottish coastline and the setting sun – see picture above which was taken from our room. It was pretty surreal to have finished 6 days of torturous walking but also to be able to look at such a wonderful view of the country in which I was born.
Some people say final leg of the walk is pretty boring but Chris and I disagree. Yes it’s flat but the first half is a wonderful mix of colour and open greenery much of it along the River Eden. The second half was interesting as there’s quite a lot of history (Scotland vs England battles past) and of course the excitement of finishing the walk. There’s a 3 mile straight stretch of military road when the Solway Firth initially comes into view. As you can actually see the road disappearing into the horizon, it’s mentally punishing. Moreover, whilst it seems like the walk is coming to an end at this point, there’s still 90 minutes of solid walking ahead. There isn’t much actual wall on display but there is strong evidence of its location, particularly on the 3 mile section of straight road.
My feet have survived today but my knee only lasted 1 hour this morning before painkillers were required. Chris suffered with her toe blister which is now the size of Africa.
We went straight to the ‘only pub in the village’ where we had a celebratory ‘pint’. Now relaxing in our room looking at Scotland (see picture above).
We enjoyed Hadrian’s Wall but will be glad to be home again after 6 days! We collected £4000 for PLANETS, a charity founded by my surgeon. But this challenge was so much more than that – it was one of a number of Turning Points in my quest for a decent quality of life and a positive outlook for the future while living with and beyond cancer. It also created my blog site which is still here today!
There’s been a lot in my blog about cancer, the cancer patient and the medical teams. However, we sometimes forget to mention the close family and friends who are also a piece of the cancer jigsaw. Without these people, it’s possible the patient would potentially have a much poorer quality of life.
I’ve had tremendous support from my immediate family and many of my friends. Some of my closest friends have almost been functioning as counsellors. I’m in a much better place than I was nearly 8 years ago but I have a lot of people to thank for some excellent progress. My son & daughter’s families have all been there for me and although my 4 grandsons don’t quite understand the situation, their presence in my life is a great tonic.
Perhaps even more focus should be given to those who are supporting, living with and in many cases, caring for cancer patients 24/7 – often routinely taken for granted. In particular, I’d like to focus on my wife Chris who has actually been at my side for most of my adult life.
I don’t really need that much physical care from someone else, I’m lucky in that regard. She was there when I received the bad news and she helped me break this news to others. She was the first person I saw when I woke up after major surgery. Since diagnosis in 2010, she’s been watching over me when I’m not quite 100%. She was singularly responsible for getting me fit enough to be able to fulfil a long-term ambition to walk the entire 84 miles of 2000 year old Hadrian’s Wall in 2014 and she walked every single mile with me. I recently wanted to walk up a very big hill in Wales and she was there too (see photos).