The majority of Neuroendocrine Tumours (NETs) are slow-growing (well differentiated). However, many 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 metastasized and could now be incurable. Some tumours will grow and metastasize without syndromes, i.e. they are non-functional. These may become functional at some point in the future.
However, with most slow-growing NETs, this does not mean terminal as there are various treatment options even at Stage IV. In fact, NETs are one example where surgery at the metastatic stage can often provide prognostic advantages denied in other more aggressive types of cancer at the same stage. 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.
I sense a change of thinking about people living longer with cancer and the reasons are fairly obvious. Due to better diagnostics and treatment (including for NETs), more people are now living with their cancer; and as a species were are actually 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. Now that sounds pessimistic but this needs to be put into context. 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. According to Macmillan Cancer, the cancer story is changing. What was once feared as a death sentence is now an illness that many people survive. A small bit of research indicates this type of thinking is becoming more apparent in other countries too. As survival rates increase, so too will the number of people living with the legacy of cancer and its treatment.
Although more people are living with cancer rather than dying from it, quality of life must be a factor going forward. Any quality of life campaign fits nicely into the existing challenges faced by 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. Cancer patients need more support after a cancer diagnosis. NET patients are effectively already in this position and have been for some time. We have been at the forefront of a group of people living with cancer and needing close support and surveillance. For example:
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 reason and QoL takes a hit when they are chopped out. Many patients succumb to gastrointestinal malabsorption.
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 – i.e. somatostatin analogue hormone therapy can have a side effect of increasing blood sugar to diabetic levels and reduce thyroid function. 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. 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.
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/caregivers where applicable.
Living with Neuroendocrine Cancer is not easy – it takes guts (both metaphorically and literally).
Awareness of the issues surrounding diagnosis is important and remains so. However, I believe more focus should be placed on support for those living with Neuroendocrine Cancer and it’s consequences. So …. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for quality of life.
Remember – they are no longer rare.
Thanks for reading