NET Cancer Blog – Top 6 posts of 2017

Top 6 posts

These are my top performing posts for 2017 – comprising one eighth of my entire hits for the year.  My blog hits for 2017 almost reached a quarter of a million, double that of 2016 which was double that of 2015.  A chunk of these figures can be attributed to most of these articles.  Please share to maintain the momentum.

Top 6 posts for 2017 (Click on each article title to read) Short Description Hits in 2017
The Human Anatomy of Neuroendocrine Cancer Making the point that Neuroendocrine Cancer is not confined to a particular part of the body 9,906
Neuroendocrine Cancer Syndromes – Early Signs of a Late Diagnosis All about syndromes 7,546
Neuroendocrine Neoplasms – Grade and Stage (incorporating WHO 2017 changes) The very latest information (particularly about grading) 7,027
Neuroendocrine Cancer – no treats, just tricks A very powerful awareness message.  It was only published 2 months ago and is already the 10th most read post in over 220 since this site was set up. 6,083
Steve Jobs – the most famous Neuroendocrine Cancer Ambassador we NEVER had Love him or hate him, he generates external hits on my site – you could say he is now helping with Neuroendocrine Cancer awareness.  It also debunks the Pancreatic Cancer myth 6,046
Ignore this post about Neuroendocrine Cancer Another very powerful awareness message – it is also the most tweeted post about NETs on twitter 4,812

Thanks for reading

You may also enjoy my article “10 Questions to ask your Doctor” – click here.

Most Viewed Posts – click here

Thanks for reading

Ronny

I’m also active on Facebook.  Like my page for even more news. Help me build up my new site here – click here and ‘Like’

Disclaimer

My Diagnosis and Treatment History

Sign up for my twitter newsletter

Check out my Podcast Interview (click and press play)

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

patients included


PLEASE SHARE THIS POST

At home with Lanreotide

 

The Somatuline ‘reservoir’ forming in the deep subcutaneous tissue

I think after 101 injections (as at 7th August 2018), I think it’s safe to say I’m now ‘at home’ with Lanreotide (Somatuline Autogel – Somatuline Depot elsewhere).  I’m looking forward to celebrating my centenary ‘butt dart’ in a years time!

I was fortunate enough to actually have the injection ‘at home’ via an insurance policy for the first 4 of the years of my treatment.  That was really handy because it was informal, chatty, and I had excellent ‘continuity of service’ with the same nurse administering 80% of those 54 injections.  I only had 3 other nurses over that period covering my local nurse’s holiday etc.

When I retired from work, I then had to travel to my local hospital and take my turn amongst the ‘great unwashed’.  Don’t get me wrong, I have the greatest respect for the UK NHS.  However, it’s also true to say my monthly ‘butt dart’ suddenly became more of a conveyer belt feeling, less chatty but in the main, the continuity effect I enjoyed previously was thrown right out of the window.  I had some superb injections but I also had some ‘not so superb’ ones.  There was very little continuity as my 33 hospital administered injections were carried out by 17 different nurses.

If I had to list 6 common discussions between NET patients, issues with their injections of somatostatin analogues would almost definitely be on the list.  Common administration problems with Lanreotide include untrained administrators, fridge problems, incorrect injection site, pinching instead of stretching, plunge speed, painful injections and many others.  All of these issues can be linked to training and continuity.  One thing NET patients like is an expert injection by the same person if at all possible.  It’s also true to say that these issues can cause some anxiety amongst patients leading up to and during the procedure.

side view of Lanreotide with needle cap off but with plunge protector still on

Boom!

I was therefore delighted to be signed up this week for a service in UK called HOMEZONE+ whereby a trained nurse will come to my house and administer my injection.  Although it’s been available for some time, this element of the service has not been particularly well publicised. The drug will arrive a couple of days prior and be stored in my fridge ready for the injection day.  For those worried about transport, the drug arrives by courier in a refrigerated vehicle.  The service is provided by a third-party via NHS, at no cost to the NHS or the patient, as it is a service funded by Ipsen Ltd.

Now …… I got wind of this service 6 months prior but it took me sometime to discover what it was all about, despite a lot of ‘digging’. I had previously heard of other elements of this service whereby the drug is delivered directly to patient’s house for self injection, injection by a trained carer or for injection at a third-party site such a local GP (PCP).  However, the service I’ve signed up for is none of those, this is a service where a trained nurse will come to my house and administer the injection.  Happy days.  Royal Bournemouth Hospital is actively promoting the scheme to patients being administered with Lanreotide.

But ….. It was also suggested to me that not all hospitals are making the service available.  If this of interest to other UK patients, I suggest you initially make contact with your specialist nurse or doctor and enquire (….. and if it was me, I would ask why not if they’re not making it available!).  I’ve probably documented all I know but happy to chat more with UK patients about the scheme – you can message me here:  Message Ronny Allan

What about outside UK?

I researched to see if other countries have something similar for Somatuline (Lanreotide) – please note not all patients will be eligible so you need to check first:

1.  The Netherlands.  I attended ENETS Barcelona and sat in on a presentation from a Nurse in The Netherlands who described a similar scheme.  The presentation was entitled Home Injection Service for Somatostatin Analogues so may also include Octreotide.  Contact is Wanda Geilvoet at the Erasmus Medical Centre in Rotterdam.

2.  USA.  Ipsen US appears to have a similar scheme through their Ipsen Cares program.  It’s called “Home Health Administration (HHA)”.  This is available for patients who are unable to receive their Somatuline Depot injections at the doctor’s office. Eligible patients can have a nurse visit their home to administer their injections. There is no cost to the patient for this option. HHA must be requested by the doctor and the patient must be enrolled in IPSEN CARES.  The Nurse HHA Program is an additional offering of
IPSEN CARES available via a doctor for all eligible patients prescribed
Somatuline Depot.
• A physician must prescribe Somatuline Depot to be administered by Nurse
Home Health Administration for the patient.
• The program is available to most patients covered by commercial insurance
plans.
• Patients may not participate if prescriptions are eligible to be paid in part or
full by any state or federally funded programs, including, but not limited to
Medicare or Medicaid, VA, DOD, or TRICARE.
• Residents of Massachusetts, Michigan, Minnesota, and Rhode Island are not
eligible.

Click here for more details.

3.  Canada.  There is not enough detail on the Ipsen Canada site to say there is a scheme but worth asking.  Click here

4.  Australia.  There seems to be a programme called ‘Assist’.  Click here for more details.

5.  Republic of Ireland.  They have the same service as UK, also called HomeZone.  They will send a trained nurse out to your home monthly to do the injection for you free of charge. To arrange, the number is 01 4291820

I will add other locations as and when I find out. 

Let’s share data!

I’m sure there must be more countries involved so please let me know.  In fact, would UK patients let me know if you are on the ‘Homezone’ scheme where a nurse comes to your house and administers the drug, and via which hospital was this arranged.  I’ll update the blog so we can all find out about it.

How’s it going so far?

On 17 April 2018, I had my 10th ‘HomeZone+ nurse administered injection and the same nurse for all 10. It’s a first class service  from the UK provider – Healthcare at Home (HAH).   I’m told which day it will arrive and I receive two text messages with timings, the second one is a more precise time allowing me to get on with my life.  The Nurse then makes an appointment to come and administer the injection. This works excellently too.  The Nurse calls me with some notice in order to get the injection out of the fridge ready for administration.  The injection is given very efficiently and my next appointment is made ready for 28 days time.  I also found out that sharps box provision and collection is available through the scheme, another bonus.

So far so good.

You may also appreciated my other blogs on Somatostatin Analogues and Lanreotide (Somatuline):

Lanreotide – it’s calling the shots

Lanreotide vs Octreotide

PoNETry – An Ode to Lanreotide

A video showing how Lanreotide works

Lanreotide trial for Lung NETs (SPINET)

Somatostatin Analogues and Delivery Methods in the Pipeline

Thanks for reading

Ronny

I’m also active on Facebook.  Like my page for even more news.  I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Read my Cure Magazine contributions

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

Please Share this post

 

Living with Neuroendocrine Cancer – 8 tips for conquering fear

8 tips for conquering fear

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.

Stabilised

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:

  1. 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).
  2. 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.
  3. 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.
  4. 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.
  5. 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.
  6. 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!
  7. 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.
  8. 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 video from NET Patient Foundation presented by Kym Winter, a qualified Psychotherapist and Counsellor – click here.

I also liked this video by 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

Join my group – a helpful bunch!

 

Stay well all

Thanks for reading

Ronny

I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Read my Cure Magazine contributions

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

 

Happy Thanksgiving

thanksgiving

Just a note to say Happy Thanksgiving to my friends in USA or who may be celebrating it elsewhere.  I am so thankful for the support I get from the US who make up the biggest proportion of subscribers to my blog and associated Facebook page.  I’m also thankful to the US support and advocate organisations who are consistent in their support for my blog via commendations, recommendations, likes and sharing of some of my material.  So I’m thinking of y’all today!

Now …….. I hate to stereotype but I guess a lot of you might be eating turkey today?  No Thanksgiving is complete without a turkey at the table (… so I’m told!).  And also a nap right after it’s eaten….. right?

As you know I like to analyse such things …… Apparently, the meat has a bad reputation for making eaters sleepy, but is there really science to back that up?   My feed increases around this type due to the connection of turkey with the word serotonin.  So for me, this has been very educational.  Those who read my blog on the ‘S’ word may remember that tryptophan is one of the bodies amino acids and is partly responsible for the manufacture of Serotonin in our system.  Turkey is said to be high in tryptophan but the recent alerts I received say it is no higher than many other meats.  I’ve also heard the stories about how eating too much turkey makes you sleepy. Melatonin is said to be the hormone which helps with sleep regulation and is manufactured from Serotonin (which is manufactured from tryptophan).  For those worried about eating too much tryptophan, don’t be, all NET nutritionists say you should not be concerned about this and the only food restrictions that apply are right before the 5HIAA test as directed by your local specialist.

However, the articles I read, (one was from the New York Times and one from Time Magazine) both confirm this is not exactly correct with one describing the turkey/sleepy connection as a “common myth”.  In any case, what’s wrong with an afternoon or evening nap after a traditional meal?

While tryptophan could make you drowsy on its own, its effects are limited in the presence of other amino acids, of which turkey has many. You might be extra tired after your meal, but best not to blame the turkey in isolation; it could just be that you simply ate too much. With potatoes, stuffing, yams, rolls and pie on top of that turkey, you’re inhaling a lot of carbs!  I also read that the bigger the meal, the more to digest and therefore your body is using up a lot of energy doing this – so this will add to the sleepy feelings!  As for myself (and many NET patients I guess), I cannot eat a large meal due to an absence of various bits of my ‘internal plumbing’ not being able to cope with the deluge. We Brits eat a lot of Turkey on Christmas day and our traditional ‘Sunday Roasts’ normally include beef, turkey, chicken or pork and all the ‘trimmings’.  It also comes with a traditional post dinner nap.  I guess that confirms the above thinking!

Actually I read that turkey is a really healthy meat to eat, it’s low in fat, full of protein and other nutrients including the important B vitamins that NET patients might be at risk of deficiency (B3 and B12). Note to self …… eat more turkey!

There’s a great infographic from the Time Magazine below – check it out!

Enjoy your Thanksgiving! It’s OK to have a nap too ……

Thanks for reading

Ronny

You may also enjoy:

Nutrition Series Part 1 – Vitamin and Mineral Challenges. This was co-authored by Tara Whyand, UK’s most experienced NET Specialist Dietician. This blog provides a list of vitamins and minerals which NET Cancer patients are at risk for deficiencies, together with some of the symptoms which might be displayed in a deficiency scenario.

Nutrition Series Part 2 – Malabsorption. Overlapping slightly into Part 1, this covers the main side effects of certain NET surgical procedures and other mainstream treatments. Input from Tara Whyand.

Nutrition Series Part 3 – ‘Gut Health’. This followed on from the first two blogs looking specifically at the issues caused by small intestine bacterial overgrowth (SIBO) as a consequence of cancer treatment. Also discussed probiotics. Input from Tara Whyand.

Nutrition Series Part 4 – ‘Food for Thought’.  The potential connections between food content and NET issues.  General coverage as everyone is different.

Nutrition Series Part 5 – ‘Pancreatic Enzyme Replacement Therapy’.  The role of PERT (Creon etc) in helping NET Patients

I’m also active on Facebook.  Like my page for even more news.  I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

On twitter?  Please retweet this post please https://twitter.com/RonnyAllan1/status/705391786328510464

turkey-infographic

Living with NETs – a patients included award winning site

livingwithnets ronny story

It’s no secret that I and other patients (see picture below) have been helping Ipsen Group and their website consultants (Kanga Health) with a new site designed to support and help all Neuroendocrine Tumour patients.  It was subsequently launched on NET Cancer Day 2016 and is very aptly named ‘Living with NETs‘.  Very pleased to see all this hard work recognised at the 2018 Eye for Pharma awards for the Most Valuable Patient Initiative.  And, this is great awareness for Neuroendocrine Cancer at a major pharma event.

eye for pharma

I’m also delighted to be speaking alongside Ipsen as the EyeforPharma Patients Summit event in London on Oct 16th 2018.

eyeforpharma ronny and isabelle

I’m quite excited about this new initiative from Ipsen Group (the manufacturers of Somatuline (Lanreotide)) and not only because I feature on the site but because I sincerely believe it has the potential to be a fantastic facility for anyone interested in NETs, whether they be a patient, a carer, a health worker or anyone who wants to find out more.  And it’s not just learning about NETs, it’s so much more than that.  It’s also international and they are rolling out language by language over time (as at 13 Mar 2018, it’s available in English, German and Portuguese).

living with nets home

me and paul allen
Working with Kanga and Ipsen to design the site

Those who know me best will know that I fervently believe that patient experience and patient stories are the best tools we have for awareness and this site is strong in this element. Check out my series of Living with NETs videos available on the site – click here

Doctors might be the experts in your condition

Do you know what?  I’m sensing a change in thinking, I’m sensing that more and more people and their organisations are starting to come to the conclusion that patients have a part to play in all sorts of medical areas.  On the subject of Doctors, I’m of the solid opinion that we should be working more in partnership with our Doctors whether they know about NETs or not.  There doesn’t seem to be any point in beating them up because they don’t know enough about NETs.  Let’s help educate them instead!

living with nets patient stories

 patient is the most underused person in healthcare

Check out the site HERE

Thanks for reading

Ronny

I’m also active on Facebook.  Like my page for even more news.  I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

patients included

 

“Not the Stereotypical picture of sick”

project3x5

I’ve never really understood why people get upset or annoyed when someone tells them they look well. Maybe I just think differently than others?  I like to look for the positive things these well-meaning messages can convey.  Most people are just trying to be nice, even if it comes over clumsy. Personally, I love it when people tell me I look well, I mean who wants to look unwell?  If I’m feeling mischievous, I sometimes say “yes….. but you should see my insides“.  Most of the time, it dispels any awkwardness and they follow my laughter.

Yesterday, I listened to a few video clips of a very inspiring young lady who eloquently delivered her view of what it is like to have an invisible disease and still look the ‘perfect picture of health’.  She did it in such a way that I could never do and I guess she feels the same way about looking well on the surface.  This is a lady who has a very rare disease and struggles with enormous amounts of pain.  However, you wouldn’t think it to look at her.  I think her messages are really worth listening to.

If you can’t see an illness, is an illness really there?

 

My invisible disease allows me to look the picture of perfect health. 

 

https://twitter.com/theproject3x5/status/777971901855522818

 

What an inspiration!  Thanks Danielle.

Thanks for reading

Ronny Allan

I’m also active on Facebook.  Like my page for even more news.

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Neuroendocrine Cancer – not average, just mean

 

incidence 2012 jama
incidence rising faster than all other malignant neoplasms

Most people have perceptions of cancer in their heads, fairly fixed perceptions too.  They think about all the stuff they see daily on TV, in the main press, and people they know.  The big cancers set the scene.

Most doctors know about the big cancers.  They also know how to treat them, many of them have a fairly fixed regime of surgery/chemotherapy/radiotherapy.  Many survivors will have side effects of their treatments, e.g.perhaps temporarily losing their hair.  More people are now surviving these cancers and many will be declared disease-free or placed into some sort of remission status (no evidence of disease is a common term I see).

Most NETs are not like that!  Whilst it has a reputation for being a generally slow-growing type of tumour at the lower grades (but very sneaky though!), offers a good outlook/prognosis for many, has many different types of treatment modalities, it can frequently present at an advanced stage and become incurableand/or offer some quality of life challenges.  For example:

  • Not many doctors know a lot about it.
  • Many patients will have gone through extended diagnostic periods, perhaps months, years in extreme cases.  In many cases it can be ‘silent‘.
  • Only doctors who know a lot about it, really know how to quickly diagnose it. Only they know how to properly treat it. It’s a very individual disease, there are many factors involved.
  • Another key difference with NET Cancer is that many people will have an associated ‘syndrome‘ and this might have been with them for some time before diagnosis.  The symptoms of these syndromes can sometimes be rather debilitating, even after treatment.
  • Many people will never be disease free nor will be they given a status of full remission.  Their surveillance (scans etc) could continue indefinitely.
  • Many people could be given treatment indefinitely, in particular, Somatostatin Analogues.
  • Many people will live with the consequences of this cancer for a long time and this plays on their mind as well as the effect on their body.

There’s a lot of talk about something called ‘unmet needs’ and quite right too. However, there’s not enough talking about unmet needs in our community. This is a highly prevalent cancer and many people live a long time with the consequences of the cancer and it’s treatment.

Before you receive treatment, always ask what the side effects might be, how long they might last and what support you will get to treat or lessen them. Don’t be afraid to ask, you deserve to be told.

p.s. I look well but you should see my insides!

Neuroendocrine is not your average cancer but it can be pretty mean.  That might explain why there are so many hardened NET Cancer patients out there!

Thanks for reading

Ronny

I’m also active on Facebook.  Like my page for even more news.  I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

patients included
This is a Patients Included Site

 

Tweeps – have you retweeted this tweet?

 

Not every illness is visible

9540384-large

I personally don’t see myself as ‘disabled’ but I do have an invisible illness. I’m fit, can walk for miles, I even look quite healthy.  However, I live with the consequences of Neuroendocrine Cancer. These consequences differ from person to person but I know that some people with this disease have even met the criteria to be officially classed as ‘disabled’ through government schemes.  Judging by what I read, I have less debilitating issues than others, so I feel quite fortunate. That’s not to say I don’t have any issues at all – because I do!

I was therefore delighted to see news of an initiative supporting invisible illnesses by Asda (for those outside UK, Asda is a major UK wide supermarket chain).  Asda have now recognised that many conditions can be classed as ‘invisible disabilities’ and this need is now recognised in the availability of toilet facilities (see picture below). This is particularly relevant to my own disease, all types of Inflammatory Bowel Disease (Crohn’s, Ulcerative Colitis) or anyone who has issues due to the consequences of their cancer or treatment (e.g. GI surgery, Chemo, Radiotherapy).

asda toilet

9540384-large
Check out the associated blog Read blog “Things are not always how they seem”

I wrote an earlier blog on this subject called “Things are not always how they seem“.  This was a great ‘invisible illness’ awareness message in the form of a reference to a newspaper article about a lady who had Inflammatory Bowel Disease (IBD) and was ridiculed by someone who saw her use a disabled toilet clearly unaware of her invisible illness.  This is definitely worth a read!

I also wrote a blog about my own concerns focussing in on the issue of ‘Stomach Cramps’.  This is something that causes me issues from time to time and I dread a painful occurrence if I’m ‘out and about’.  I generally don’t let Cancer stop me doing stuff.  Consequently, I will still visit remote places as I have done so for the last few years and have intentions of continuing to do so in the future.  Fortunately I have been lucky with my experiences to date.  If I’m out and about including on holiday, I have no reservations about waltzing into hotels or restaurants where I know there will be toilet facilities. I’ll also use a disabled toilet if others are not vacant.  My worst and most painful experience was in 2014 whilst I was walking along Hadrian’s Wall in remote Northern England – this is covered in my blog “My stomach sometimes cramps my style“.

I have not yet been challenged in my use of toilet facilities (without being a customer) but I always carry some ‘Get me out of jail’ cards just in case.  I have two, one from NET Patient Foundation and one from Macmillan Cancer Support.  You can order these online (links given) and I’m sure other national advocate organisations do similar things.

npf-toilet-card1_Page_1-300x171macmillan toilet

 

I applaud Asda for their initiative.  Lets hope it catches on anytime soon!

I may look well but you should be my insides!

insides

 

 

 

 

 

Thanks for reading

You may also enjoy these similarly related articles:

Shame on you! – click here

I look well but you should see my insides – click here

Things are not always how they seem – click here

You must be doing OK, you’ve not had Chemotherapy – click here

Not the stereotypical picture of sick – click here

An Ode to Invisible Illness – click here

Poker Face or Cancer Card – click here

Ronny

I’m also active on Facebook.  Like my page for even more news.  I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Read my Cure Magazine contributions

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

 

Ignore this post about Neuroendocrine Cancer

ignore-this-post

When I was diagnosed, I wasn’t feeling ill. In hindsight, I now know some of the signs were there, I just put up with them. Neuroendocrine Cancer had laid a trap for me and I fell right into it. You see, Neuroendocrine Cancer can be very quiet and unobtrusive. It also plays the ‘long game’ and will sometimes take years before it’s finally discovered.

Not satisfied with loitering in your small intestine, appendix, lungs, stomach, pancreas and a host of other places, it wants to reach out to your liver, your lymph nodes, your bones and your heart where it can cause the most damage. It will also try to get into your head, metaphorically speaking – however, it will also try the physical route.

As it spreads, it can become noisier through growth but also by secreting excess amounts of hormones and other substances. It knows that tumour growth and these excess hormones and substances will mimic routine illnesses such as IBS, diarrhea, stool changes including steatorrhoea, stomach cramps and bloating, asthma, facial flushing, menopause, weight loss, anaemia, fatigue, tachycardia (fast heart beat), pain, and nausea. These may manifest themselves as common endocrine conditions e.g. it can mess with your blood sugar levels.  These are a few examples, there can be many other confusing symptoms. Neuroendocrine Cancer thinks this is great because it fools doctors into misdiagnosing you with something else which means it can continue to grow undetected and spread further inside you. If nothing is done to stop its relentless growth, it will eventually kill.

However, sometimes an inquisitive doctor or nurse upsets its progress by thinking ‘outside the box’. Neuroendocrine Cancer hates when people are aware of its devious nature and hates when people know which tests can be used to find it and which treatments are best to attack it. Inquisitive, proactive and determined patients can also add to this effect and sometimes a bit of luck is involved.

It doesn’t give up easy and tries to work around your treatment. It knows your treatment will come with certain consequences and it will try to exploit this situation by keeping you guessing between cancer activity and these consequences. It really hates observant medical staff and patients, particularly those who understand Neuroendocrine Cancer.

Unfortunately for Neuroendocrine Cancer, there is now more knowledge about its devious activities and the latest statistics indicate it’s starting to be caught earlier. Nonetheless, we cannot afford to become complacent.

Neuroendocrine Cancer hates awareness and it will be extremely happy if you don’t share this post.

Thanks for reading

Ronny

I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Read my Cure Magazine contributions

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

I’m still here

EIGHT years ago. I was diagnosed with metastatic Neuroendocrine Cancer – 26th July 2010.  Until I arrived at my 5th anniversary, I hadn’t thought much about how (or if) I should mark these occasions.  I never thought I would dwell on such things as ‘Cancerversaries‘ but I now totally get why many patients and survivors do.

There are various types of ‘Cancerversary‘ that for some, could trigger a mix or range of emotions including gratitude, relief and fear of cancer recurrence or growth. These milestones could be the date of a cancer diagnosis, the end of a particular type of treatment (anniversary of surgery etc) or a period since no signs or symptoms of cancer were reported. Everybody will most likely handle it their own way – and that’s perfectly understandable.

The 5 year milestone was significant, mainly I suspect, because it’s a time period very frequently used in prognostic outcome statistics. When I was researching after my diagnosis, the 5 year figure for metastatic Neuroendocrine Cancer wasn’t that great, in fact it looked less favourable than more aggressive cancers. Then I gradually worked out that the prognostic figures for Neuroendocrine Cancer were very dated (like many other things) and did not take into account improved diagnostic techniques and the introduction of a plethora of new treatments, in particular somatostatin analogues. Consequently, I no longer pay any attention to prognostic statistics – I’m actually more influenced by the large number of long-term survivors I see out there.

Check out the fantastic response to my 7th year cancerversary post. Click here to be inspired.

My cancer is treatable but not curable but I will never call it terminal.  Despite some issues this year so far, I’m still here and I intend to be here next year, and for many more years after that!

Thanks for reading

Ronny

I’m also active on Facebook. Like my page for even more news. I’m also building up this site here: Ronny Allan

Disclaimer

My Diagnosis and Treatment History

Most Popular Posts

Sign up for my twitter newsletter

Read my Cure Magazine contributions

Remember ….. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life!

 

%d bloggers like this: