Quality of Life remains important

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 issues such as gastrointestinal malabsorption, small intestine bacterial overgrowth, and/or exocrine pancreatic insufficiency. 

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 quite 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. NETs 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.  It’s no surprise that anxiety and depression can affect many patients in these situations. There can often be a knock-on effect to close family members and carers/caregivers.

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.