The majority of Neuroendocrine Tumours (NETs) are slow-growing. However, the tumours can be silent (non-functioning) for some years before they start to 'function' and inform you of their presence. Even then, it may take some time to work out the real cause as the symptoms can mimic regular ailments. Moreover, in most cases, the appearance of a functional tumour normally indicates the disease has spread and is now incurable. However, with most slow-growing NETs, this does not mean terminal as there are various treatment options even at Stage 4. In fact, NETs are one example where surgery (for example) can provide prognostic advantages denied in other more aggressive types of cancer. However, it's true to say that many NET patients regardless of tumour type or grade and stage of tumour, need to live with quality of life (QoL) challenges, or as my friends in Macmillan Cancer call it - live with the consequences of their cancer. There could be a 'cure' if the tumours are found very early before spreading and removed surgically. The word 'cured' is used with care as it is a controversial point for some. However, the word is mentioned in the annals of the various NET Cancer expert publications - for example Dr Richard Warner uses the term in certain scenarios.
I sense a change of thinking in the UK about living longer with cancer and the reasons are fairly obvious. More people are now living with their cancer and more of us are living longer. Add the two together and you can see why the big charity organisations are now saying that one in two people will develop cancer at some point in their lives. Ergo - as we live longer we are more likely to come into contact with cancer on the basis that age is a big factor whether someone gets it or not. A small bit of research indicates this type of thinking is becoming more apparent in other countries too. Now that sounds pessimistic but this needs to be put into context. Due to advances in medical science, more people are surviving cancer than ever before. For example, in UK today, more than one in three (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 has doubled over the past 20 years. The cancer story is changing. What was once feared as a death sentence is now an illness that many people survive. As survival rates increase, so too will the number of people living with the legacy of cancer and its treatment
As a result of these new statistics, there is now a big push to focus more on support for people living with Cancer and Macmillan Cancer have some great campaigns in this area - thus why I'm a big fan of theirs. These campaigns fit nicely into the existing life of many Neuroendocrine Cancer patients who need support well beyond their diagnosis and treatment and for some time. I consider these campaigns additional help in fighting our corner. And of course we need help because for many NET patients there will be no remission, there will be no cure and whilst the government is now waking up to the fact that all cancer patients need more support after a cancer diagnosis, NET patients are effectively already in this position and have been for some time. For example:
People will be dealing from the effects of late diagnosis which has resulted in metastatic disease which some people will have been fighting misdiagnosed illness for years.
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 reason and QoL takes a hit when they are chopped out.
People will be dealing with remnant and inoperable tumours which may nor may not be producing an associated NET syndrome (some of the symptoms can be rather debilitating in the worst cases)
Additionally, people will be dealing with the side effects of multi modal non surgical treatments, such as somatostatin analogue hormone therapy (Octreotide/Lanreotide), chemotherapy, mTOR inhibitors (i.e. Everolimus, Sunitinib), biological therapy (i.e. anti angiogenics), radiotherapy (i.e. PRRT). Whilst it's great there are a wide range of therapies, they call come with side effects.
Some people will have gained secondary illnesses in part due to the original cancer or treatment - i.e. somatostatin analogue hormone therapy can have a side effect of increasing blood sugar to diabetic levels. There are many other examples.
NET Cancer be an expensive cancer to treat and this is exacerbated by the length of time the treatment lasts. Whilst people have access to free public services or private insurance, many people will end up out-of-pocket due to their cancer. Over time, this adds up.
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.
Living with Neuroendocrine Cancer is not easy - it takes guts (both metaphorically and literally).
I look well but you should see my insides!
Thanks for reading
Ronny Allan
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