In the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life

Adding life to years is as important as

OPINION.  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’. The recently announced Cancer Moonshot initiative is a timely ‘reinforcement’.  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 focussed 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).  To be rare is to ignored, so I don’t understand the motives of those who ignore the indisputable mathematical facts available.

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.

This is why I was very pleased to hear about the new International Neuroendocrine Cancer Alliance (INCA) campaign to not only address the ‘unmet’ needs of NET patients but to undertake to do it alongside NET specialists representing regional groupings.  I was also extremely happy to have been invited as a guest of INCA to attend the first ever joint patient-physician seminar hosted by ENETS followed by the annual INCA summit where doctors were also invited to form a panel for the first session. It’s worth remembering that I’m not part of the INCA alliance, nor do I represent any national organisation on this blog.  I’m simply RonnyAllan.NET  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.

The first question to the first ever joint patient-physician symposium

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 locations will 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 within my question to the INCA 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.

“Adding life to years is as important as adding years to life”

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

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Author: Ronny Allan

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29 thoughts on “In the war on Neuroendocrine Cancer, let’s not forget to win the battle for better quality of life”

  1. Thanks so much for this, Ronny. I totally see my own own struggles with PNET here. First of all, YES– “Adding life to years is as important (for me, even more important) as adding years to life”. Second, like others who have made comments here, I see especially nutritional counseling as an unmet need, as well as early diagnosis and financial challenges. Coming from a poor country with limited access to good medical insurance, lack of updated diagnostic scans and NET treatments, as well as lack of medical personnel and groups with experience in NETs, I had to go abroad for further 2nd opinions and treatments and paid for everything out of pocket. There is so much that needs to be done to help make life easier and better for those struggling and living with NETs, and I’m glad to see more actions being taken at so many levels. I just hope the diagnostics, treatments, and support will trickle down to the less developed countries.

    1. I fully agree, the same here in South Africa also not much info on nutrition, no support groups on NETS.

  2. Very well stated. I developed pancreatitis as a result of so many metastatic tumors in my pancreas and the pancreatitis had a major negative impact on my quality of life. I’ve also been through every treatment there is for NETs. Some worked, some didn’t, but they’ve all been exhausted at this point after 5 years. My only hope now is the immunotherapy clinical trial I just joined.

  3. Love reading your articles keep up the good work.I’m glad for a change to see a site that is not trying to sell something to get peoples money or put out false info.I’m in early stages of me static pancreatic nets on lanureotide

  4. Thxs for great info. Received no support or info upon initial diagnosis Nov 2016 except to try and get me into clinical drug trial for lungs. Laneotride. Was not eligible; no Receptors. My friend of 30 years Linda Hageman speaks highly of you

    Sent from my iPhone


  5. Thanks Ronny as always. I agree. I chose quality of life every day. I personally am not interested in time without quality . Support for long termers like us is not so easily found or identified. A big change for people in our community is indeed finances. Even though our medical costs are largely covered by universal health schemes, we have so many other expenses. For instance many of us have had to stop working- with or without long term disability insurance . Losing ones income is huge. Savings deplete quickly. This changes lifestyles and impacts QofL.

  6. Thank you for all that you do to get the word out to us and yes to advocate for us as a patient yourself! I am going on five years from diagnosis. Some procedures done and success in each one. I just had my first Galium scan last month as it’s finally now available! The news was good as my nets are not spreading anywhere else at this time. I am lucky that my Liver Embolizations have been effective for me….this chronic disease gets an overhaul with each one. I feel good and I am living each day to the fullest. Just skied 5 days in a row! Started a new exercise program.
    I will advocate here for Nutrition counseling. Patients should demand it. On my own, I made a life change in my diet about 8 months ago. All of my blood work improved tremendously and my scans are much easier to read. It may or may not slow down the cancer, but my body is much healthier and I hope is able to fight harder!

    1. Elaine, I so agree with you on the nutritional side of things. For me it has been a lot of personal advocating and study. I too have changed my diet and lifestyle and started exercising and working with a trainer (lightly albeit). I’d love to talk to you more, you can contact me through my FB.

    2. I have made some adjustments to my diet, much of which has been trial and error. After our first treatment, all patients should be consulting with an experienced NET dietician – I believe this is an unmet need. I wish you all the best

    1. It was a very condensed version of this blog !

      I wanted to emphasise that new treatments are great but not everything needs a clinical solution. People need help to live with this cancer.

  7. Going into year nine… inoperable tumor…Sandostatin for nine years….a sick pancreas, sick liver and the living with this illness in a 76 year old body have indeed tried my patience and broken my spirit at times…I bounce back for the most part…but the last year has been medically challenging…teaching me that a chronic illness of this severity needs a village to deal with. Thank you so much for you writings and especially this blog…..

  8. Ronny once again your words so clearly represent my situation. This article touches my heart and once again I don’t feel alone in my struggle to live long and strong. Going to my Oncologist today to discuss the next step forward as my tumours are now resistant to Octreotide injections. Possibly PRRT. My thanks and regards to you.

  9. Jen has been living NETS for 14 years and says you speak to her soul – thanks so much for all you are doing. Working on adding life to years – we are in Morocco with our camper van and I have just given her the monthly Sandostatin LAR jab for the first time unsupervised – nervous moments!

    1. Hi, I’m curious as to how you were able to get access to Sandostatin while overseas. I’m assuming you don’t actually live in Morrocco? I would love to spend some time in Europe, but wondering how to get my monthly injections there thru insurance etc. I am US citizen.

      1. Hi Rindy. We are lucky to be able to bring a couple of injection packs with us in a good cool box that keeps them between 2 & 8 Deg C. We have a back up fridge just in case! We have travelled to Morocco for a few years now and until this year Jen has had to fly back to London after 28 days for the jab. Novartis told me a while ago that Sandostatin LAR was not available in Morocco but no doubt would be in most European countries. I guess some kind of private prescription organised ahead of time might be possible but sadly can’t suggest any firm solution for you. Good luck. Rob

      2. Hi, just want to add my bit to travelling . I am from Canada and I travel a lot. Nationally and internationally. I simply take my Sandostatin Octreotide with me. I travel on the plane with a cooler bag and medical freezer packs. It goes in the fridge wherever I am staying. Finding someone to give me the injection has been easy. Try contacting a local cancer clinic, doctors office etc. The only p,aces that have charged me for the injection is in the US ($40-60). Everywhere else the local medical system has been happy to be part of my quality of life. I also travel with a full medical letter from my NETs team in case I get into a crisis situation. So far it has not happened. Happy trails.

    2. Thank you so much Rob and Susan for the great info! Blue Cross has told me they would pay for it, but I don’ think they will issue the lanreotide to me in advance to travel with. Therefore, would have to get it overseas somehow. Having it injected I think would be the easy part, but finding where to get it and having it reimbursed by my insurance company is the tricky part. I need to call and have a more in depth discussion with them. Just one more thing on the list and hurdle to jump. I just hate the disruption of life this cancer and it’s treatment causes.

  10. Seriously you hit the nail on the head with the comment of adding life to our years….Im sick and tired of being sick and tired. Thanks so much for sharing!

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