……… here’s a list of 10 things I’m NOT thankful to Neuroendocrine Cancer for!
Thanks for growing inside me for years before making your vague announcement
Sorry too late, I’m metastatic and around 50% of patients will be at diagnosis (so I’m not alone!). It’s very SNEAKY!
No thanks for making a right mess inside my body!
I mean, I look really good, I look really well, but you should see my INSIDES
No thanks for generating fibrosis throughout my mesentery and retroperitoneum!
I really didn’t know what to make of this issue at diagnosis, although I did know the aorta was pretty important! Fortunately I had a surgeon who had operated on many NET patients and has seen this issue before. After my first surgery, he described it as a “dense fibrotic retroperitoneal reaction encircling his aorta and cava (inferior vena cava (IVC))”. My surgeon was known for difficult and extreme surgery, so as part of the removal of my primary, he also spent 3 hours dissecting out the retroperitoneal fibrosis surrounding these important blood vessels and managed 270 degree clearance. The remnant still shows on CT scans. Some of the removed tissue was tested and found to be benign, showing only florid inflammation and fibrosis (thankfully). That said, the abstract papers above has led me to believe that my retroperitoneal fibrosis is clinically significant. In fact I have spent the last 3 months worrying about some of it growing into reach of important vessels and only just been given the all clear (for now).
No thanks for screwing up some of my hormones
There are many hormones involved with Neuroendocrine Cancer which is unique in that different types can result in elevated levels of different hormones, often more than one is involved. Serotonin has caused fibrosisin my retroperitoneal area and is currently threatening important vessels. I don’t really need that right now!
No thanks for the ongoing symptoms and side effects
I was showing symptoms of a Neuroendocrine Cancer syndrome known as Carcinoid Syndrome (currently) such as flushing and diarrhea and fatigue was probably there too, but these were thought to be something else or ignored (by me). I don’t suffer too much nowadays other than side effects of the disease or the treatment I’ve had or receiving. However, I know from speaking to many patients the effects of the various syndromes associated with Neuroendocrine Cancer can be pretty debilitating and oppressive to quality of life.
These syndromes can be so strange and so weird, they can be very difficult for patients, nurses and doctors to treat. They can be a real ‘witch’s brew’.
Another pill for life. I have a left-sided thyroid lesion and my treatment also messes with my hormone levels.
No thanks for increasing my diabetes risk
No thanks for pushing me into pre-diabetes. My blood sugar is spiking, most likely due to treatment.
No thanks for making me retire early
I loved my job but not if it was going to kill me. I made my own decision based on how I could survive in a financial sense. Made easier as I was only 8 years from retirement but I guess I’m one of the lucky ones despite the fact I took a big hit on the income going into my bank account.
The truth is that many people still need to work whilst struggling with side effects of the cancer and its treatment. Getting some form of financial assistance from the government is not a done deal.
Neuroendocrine Cancer is a very expensive disease to treat.
This is fast becoming a big issue regardless of country and regardless of healthcare system in place. However, in privately funded healthcare, it can be exacerbated by the level of insurance cover. Read more about financial toxicity for cancer patients which is a growing problem worldwide.
……….. and no thanks to anyone who says it’s a “good cancer“
Eight years ago today, I was sat in front of a secondary care consultant, his speciality was colorectal. I asked specifically for this consultant for two reasons, firstly, he carried out a colonoscopy some 20 months previously which turned out to be negative. Secondly, my GP had referred me to the iron deficiency anaemia clinic, and they wanted to do ….. a colonoscopy. I changed that plan because this “non-issue” was dragging on; quite frankly I wanted it to be resolved quickly, and I wanted it to be resolved in my favour – after all, I wasn’t actually ill!
Rewind two months, I had an incidental set of blood tests ordered by a nurse following a routine visit to my local medical centre (……. “I think I’ve lost a bit of weight”). My haemoglobin was low (even lower on repeat testing). The GP compared my results to someone in their eighties with malnutrition. In hindsight, I should have been alarmed by that statement but instead I went on holiday to Barbados. Apparently low haemoglobin is a sign of iron deficiency anaemia. I suspected it would pass, either my blood results would revert to normal naturally, or they would after a prescription for some pills. That’s what normally happens, isn’t it? I was so indifferent to the issue, I even delayed the blood tests by three weeks.
Back to 8th July 2010 ….I hadn’t really given him many clues but within minutes of chatting with the secondary care consultant (who was armed with the results of the negative colonoscopy test), he said “what are you doing this afternoon“. I had no hesitation in saying “whatever you want me to do“. I’m still not getting it as I saw this as a chance to get an all clear, get some pills, get back to normal. To cut a long story short, the results confirmed I had a metastatic cancer. If you can see it, you can detect it.
Following the scan results, I had a dozen other tests to narrow it down to Neuroendocrine Cancer (eventually confirmed by biopsy). During these 2 weeks of tests, I finally confessed for the first time that I had been experiencing facial flushing and intermittent diarrhea. In those days, I wasn’t really in tune with my body.
I had been sitting on a beach in Barbados sipping piña coladas with my wife and neither of us had any inkling that I had a serious life threatening illness and that it had been growing inside of me for some years. Slow but sneaky? You betcha. They did some damage too – check out my treatment summary here.
I remain thankful to all those involved in the triggering of my ‘incidental’ diagnosis. The Nurse who ordered the ‘just to be sure’ blood tests, the GP who immediately referred me to secondary care (increased my chances of being diagnosed with cancer), the secondary care specialist who was instrumental in getting to the bottom of the problem in double-quick time.
My intransigence, denial and withholding vital symptoms from the doctors didn’t really help – there’s a lesson for all there.
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.
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
Sometimes, a blog post comes along and it just resonates! This was one I found via some new friends in Anti-Cancer Club (check it out – sign up for their newsletter). I got chatting with the author who has given me permission to post it here. Shari Berman is a two-time cancer survivor. She was diagnosed with Hodgkin’s Lymphoma at age 25, days after returning from her honeymoon and a second time with breast cancer 8 years later. I posted her full CV below.
Her post “25 Life Lessons From a Two-Time Cancer Survivor” is a fantastic summary of a positive approach to life, despite a cancer diagnosis (or in Shari’s case, two). I’ve seen some similar quotes before but Shari has collated them into one very powerful list. I’m not suggesting they all apply to everyone but perhaps even a ‘pick n mix’ approach would be useful. For example, I couldn’t do number 8 – they make me sneeze! (sorry Shari!)
The first 10 are here, you can see the others by linking below:
1. Life is short. Don’t wait for the perfect moment to DO or SAY something important to you.
2. Death is not failure. It is part of life and the more we accept that fact the more we can live intentionally and without as much fear.
3. A simple act of kindness can make someone’s day and leave a lasting impression.
4. You have the ability to make an impact. Leave your mark. Share your experience, your knowledge with others.
5. “Hope” is powerful.
6. If you don’t know what to say to someone in crisis, try saying “I don’t know what to say. But I want you to know I am thinking of you.”
7. You are stronger than you think. Trust me, you are.
8. Life is better with a dog
9. Trust your gut. Intuition is powerful.
10. It is important to take a “time-out”. Walking clears your head.
Read the remainder here, you won’t be disappointed. CLICK HERE to continue
Read Shari’s CV here:
Shari graduated from Cornell University and worked as a Human Resources Manager in the financial services industry for 15 years. After losing her mother to lung cancer she decided to spend her time advocating for patients and lending her perspective and expertise as patient, long-term survivor, caregiver and business professional.
Shari is a former co-chair of the Dana Farber Adult Patient Family Advisory Council where she effectively led an effort to restructure the Council and strengthen its role within the institution. She also served on Dana Farber’s quality committees and is currently a member of the Quality and Patient Safety Committee of the Massachusetts Board of Registration in Medicine.
Shari has spoken on behalf of Dana Farber at many fund-raising events and presentations on survivorship and patient care. Her talks have focused on a variety of topics including her personal experience with cancer, survivorship issues, patient centered care and how to develop and sustain an effective Patient and Family Advisory Council. Shari has also been asked to consult on a variety of projects with organizations such as the National Academies of Medicine, (formally Institute of Medicine), American Society of Clinical Oncology (ASCO), The Journal of American Medical Association (JAMA) and Livestrong.
For the first few years after my diagnosis, I avoided using the word ‘survivor’ in relation to my incurable cancer. It just didn’t seem to sit right despite the fact I’m a ‘glass half full’ kind of guy.
However …….. I was studying the term ‘Survivorship’ and found it also applies to those living with incurable and long term cancer. This piece of research totally changed my thinking. The slides above were provided by National Cancer Survivors Day (which seems to have turned rather international) – well done NCSD.Org – you should check out the site and sign up for their newsletter
What is ‘Survivorship’?
The definition differs slightly between national cancer advocate organisations but it would appear it also means “Living with, through, and beyond cancer“ which is a UK term. According to these definitions, cancer survivorship begins at diagnosis and includes people who continue to have treatment over the long-term, to either reduce the risk of recurrence or to manage chronic disease. It follows that those with incurable Cancers such as my own (Neuroendocrine) should be included under the term ‘Survivorship’.
Times are changing
I think it’s useful to look at overall statistics for survivorship to contextualise why the word ‘survivor’ might actually be more apt than it was 20 years ago. For example, in the UK, more than one in three people (35%) of those people who die having had a cancer diagnosis will now die from other causes. This is up from one in five (21%) 20 years ago. By 2020 this will improve further to almost four in 10 people (38%). This means the number of people who get cancer but die from another cause will have doubled over the past 20 years. I’m seeing similar reports from USA too where, for example, the number of cancer survivors is predicted to rise by a third by 2026 (15 million to 20 million). Almost half of the current survivors are aged 70+. In another example, the US National Cancer Institute (NCI) is predicting:
‘Silver Tsunami’ of Cancer Survivors in the next quarter century (read here).
There is also a very recent article which confirms this thinking, let me quote a bit of it: The cancer death rate has dropped by 23 percent since 1991, with some even larger gains in types of cancer that used to be extremely lethal. This means there are more and more patients like Thornton who are neither dying from cancer nor defeating it entirely. Instead, they’re learning to live with it. Full article here.
Of course, it must not be forgotten that many people will need support to maintain a decent quality of life and be supported with ongoing and long-term treatment. These are both challenges global health systems need to face with rising cancer prevalence. And both of these challenges will greatly affect my own type of cancer – Neuroendocrine. This is why I’m a very strong advocate for more focus on some of these support type issues and unmet needs, and the resources to deliver them.
So does that mean I’m a Survivor?
My research indicates this can be a very individual thing. I guess ‘survivor’ does not appeal to all people who simply have a ‘history of cancer’; and most likely for different reasons. For those with incurable or long-term cancers, some people might not think of themselves as a survivor, but more as someone who is “living with cancer.” Some may feel like they’re living but not surviving. I get that and it potentially resonates with my reluctance to use the ‘S’ word for a short period after my diagnosis. Thinking this topic through has made me compare where I was at diagnosis and where I am now. Also, I’ve considered what I’ve been able to do and what I have plans to do, despite my condition. I’ve done so much, been to so many places since I was diagnosed, and got plans to do much more, I must be surviving! Perhaps the words “I got this” was my subconscious thought in the picture I’ve used below?
And this picture which always gets a tremendous response every time I post it:
Here’s a great quote I found in relation to the term ‘survivor’:
“You may not like the word, or you may feel that it does not apply to you, but the word “survivor” helps many people think about embracing their lives beyond their illness”.
You may sometimes feel like you’re not surviving but if you’re reading this then you most definitely must be?