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

In the last 12-24 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).

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 an advocate organisation, not part of the INCA alliance, nor do I represent any organisation on this blog.  I’m simply ronnyallan.com

Unmet Needs for NETs

There’s a lot of treatments for 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.  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, 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”

Thanks for reading

Ronny

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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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