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 often indicates the disease has metastasised and could now be incurable. Some tumours will grow and metastasise 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 obvious. Due to better diagnostics and treatment (including for NETs), more people are now living with their cancer; and as a species we are living longer. Add the two together and you can see why the big scientific 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 encounter cancer on the basis that age is a significant factor in prevalence. 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 be living with the legacy of cancer and its treatment.
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. This post is not a “pity party” those who understand my motives know that is not my style. However, I believe more focus should be placed on support for those living with Neuroendocrine Cancer and its consequences. So …. in the war on Neuroendocrine Cancer, let’s not forget to win the battle for quality of life. This should also apply to high-grade cases.
Remember – they are no longer rare.
Also remember you sometimes need to climb that metaphoric hill to get you qualify of life.
Also see my Neuroendocrine Cancer UK featured post – The Perfect Storm
I am not a doctor or any form of medical professional, practitioner or counsellor. None of the information on my website, or linked to my website(s), or conveyed by me on any social media or presentation, should be interpreted as medical advice given or advised by me. Neither should any post or comment made by a follower or member of my private group be assumed to be medical advice, even if that person is a healthcare professional as they are not members of the private group or followers of my sites in any official capacity. Please also note that mention of a clinical service, trial/study or therapy does not constitute an endorsement of that service, trial/study or therapy by Ronny Allan, the information is provided for education and awareness purposes and/or related to Ronny Allan’s own patient experience. This element of the disclaimer includes any complementary medicine, non-prescription over the counter drugs and supplements such as vitamins and minerals.
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36 thoughts on “Neuroendocrine Cancer – it takes guts”
I have been told I may have to have a bag, is their any other way ?
I’m sorry Connie, this is way beyond my knowledge. This is best answered by a specialist
Hi Ronny – This is a great site. Thanks for doing this. There are some great resources and discussions here.
There have been tremendous gains made in research on NET cancer. Have you followed much on what they are doing in Europe? There is a drug they use there that hasn’t yet been approved by the FDA, but soon should be. It is called Lutathera (Lu Dotatate). Supposedly it shrinks tumors, relieves symptoms of Carcinoid syndrome, and typically lengthens life. Sounds like a pretty good deal. Here is a link to an article: https://www.cancer.gov/news-events/cancer-currents-blog/2017/new-treatment-neuroendocrine-tumors
Thanks again for offering those of us who need a good place to go. Can get exhausting with all the things found on-line, but I feel that it is the least I can do to try and get ahead of things the best I can.
Thanks for rhe comment Chad. Yes, Lutathera is the drug used in PRRT, sometimes it’s also called Lu-177. Ive written about this several times. It’s been used in Europe for 10 years and should be approved in USA by the end of this year.
Stick to my site, I write stuff as a patient for patients, always referring to the latest and greatest information. I even post mofe on my facebook site and on twitter!
Thanks Ronny – obviously when I have my follow up appt, I will know the results of the pathology and will let you know what they say/suggest. So good to have a forum where you can air your fears/questions – much appreciated – will speak soon when I have results
no issues, just remember my disclaimer! I don’t mind answering questions to the best of my ability and always based on information I have access to. My community isn’t really a forum in the conventional sense but it works for me. I fear the answers you may have gotten on a conventional forum to be honest (……10 variations on a theme all contradicting each other). When the ENETS guidance says “no specific follow up”, in my mind that means something directed by your specialist – and you should have an input too
Have in the last two months had my appendix removed for a NET. The resultant pathology showed that the tumour had broken through the appendix and so 8 weeks after the appendectomy I had a right hemicolectomy. That was nearly 3 weeks ago. Generally getting on well, started off with diarrohea about 4 times a day, but am now verging on going down the “constipation” route – something which I have had for quite a while before surgery. Any advice on how to help – fruit? more veg? The main thing is that when I go back for my post op appt, if they tell me that the lymph nodes were clear and the colon they removed is clear, what follow up/monitoring should I have. And does this mean that despite (hopefully) good news, do I still have NET cancer? Thanks Carol
Difficult one Carol – everyone is different. I always remember after my liver resection, I came out the hospital after 6 days and had not been to the bathroom! My wife fixed that problem by giving me a bowl of apples and pears 🙂 Fibre is important but you probably need dietician or gastro advice (preferably someone who understands NETs and NETs surgery consequences).
As for whether you still have NET Cancer …. I could write a whole blog on that. However, reading up on appendiceal NET follow up, I can see the follow up is a better outcome that for (say) small intestinal or pancreatic NETs. The ENETS guidelines use the words ‘curative resection’ for a ‘simple appendicetomy less than 1cm primary tumour size, without proof of lymph node involvement, then no specific follow-up is necessary. For cases with right-sided hemicolectomy due to size greater than 1cm but without proof of lymph node involvement or any other residual disease in the resected specimen, again no specific follow-up strategy seems to be necessary. That is what is says in ENETS Guidelines 2016 for Appendiceal NETs. It’s probably a question for your specialist.
My husband was diagnosed in 2001 with midgut carcinoid Timor and had 22 cm of his small intestine removed the doctors didn’t get all of cancer as it was to close to the blood supply. He has been feeling pretty good even when he took 1-MIBG. He had 12 treatments over the years but now it isn’t working. He is now doing chemotherapy taking orally temodal and capecitabine and for the first time he is tired and feels nauseous they gave him metonia for the nausea but he doesn’t want to feel like this for the rest of his life. Is there any alternative natural treatments out there that he could try
I don’t know too much about alternative medicine Jane. I tend to stick to scientifically proven treatment regimes in my blog. Why did they give him CAPTEM?
I also have been on Sando for 2 years had big surgery year and a half ago I suffer horribly with diarrhea and fatigue and absolutely no energy wish there was an end to this
your experience is similar to many stories I have read. I really believe there are things that can be done to alleviate these symptoms beyond medicine. I think you need to work out if the diarrhea is caused by syndrome or by the side effects of your surgery and then tackle it (I have reduced by 300%). As for fatigue, I also believe there has to be some acceptance that you will not have as much energy as before but it can also be alleviated through checks of vitamin levels (mainly D and B12), exercising more and trying to get into a decent sleep routine. Difficult I can hear you say but it’s possible plus it’s not an overnight task. I have several blogs talking about these things
Just stumbled upon your blog! Thanks for sharing.
Thanks – I post was even more on my Facebook site!
You blog is amazing! I was diagnosed with neuroendocrine cancer in April this year. I live in the UK and have started a blog to help raise awareness
thanks, look forward to reading it.
Thankyou again Ronny. My Consultant here in Cardiff enjoys working with you too
Yes, we’re Ipsen buddies. Look out for both of us on video on 10 Nov. I’ll post it!
On Sando for two and a half years. Switched to Lanreotide one week ago. If it was not for the diarrhea I could surrive this so much easier. I’m on tincture of opium,Chlorestimine,Hydrocodone and good old Imodium. Praying that Lanreotide will help control the diarrhea more. Its very depressing. Has anybody got any suggestions for help with diarrhea?
Ron, do you know if your diarrhoea is syndrome related or side effect related…. example, have you had abdominal surgery? If it is syndrome related, Telotristat Epitrate is arriving soon which may help control it (I have a blog on this). If surgery related, you need to understand why and how to combat or reduce effects of it. You can learn why by reading my Nutrition blogs 1, 2 3 and 4. In terms of how I tackle it, a combo of diet adjustments, stress reduction and exercise. No large meals, get enough fibre (but not too much if you’ve had surgery), reduce fatty / junk meals, stay hydrated, cut out unnecessary stress and get regular exercise. There are other tips in the blogs as certain vitamins need checking which might impact on this and fatigue. Complex subject.
I used to take tincture of opium until the price when up to $395.00
The was the cost after my insurance paid their share. I believe the selling price was close to $950.00. I don’t know to many who can afford it.
There is a new just approved drug called Xermelo. I have had issues with diarrhea since my first surgery in November 2013. I have been going between 9 and 20 times a day and due to this lost around 50 pounds. I started Xermelo Saturday, April 1st. It took about 4 days, but has controlled the worst of it now and I have actually gained 3 pounds. Good luck!
Great blog……I’ve had. 9 feet of intestine, big chunk of lung, hysterectomy, oopherectomy, and peritoneal scrape and still feel mostly ok. My only symptoms are fatigue and recently sweats. I keep my life simple, no therapies so no side effects. I’ve currently got a very small tumour on my bowel which has been stable for 2 years. Good luck to everyone who has a NET, live positively every day and when you have a bad day put your feet up without feeling guilty, there will be more good days just around the corner!
Great blog Ronny, but a reminder that not all NETs are low grade and slow growing. We have already lost my step daughter to this disease and now my husband is at end of life care. I admire your positive attitude and thirst for knowledge.
Thanks for the comment Julie and I’m so sorry to hear about your step daughter and husband. I always try to be careful with my words and consciously use words such as “nearly”, “most” and “almost” and “not quite” (etc), so I don’t unintentionally say something wrong. I think I used similar words in this blog but will double check!
Living with my cancer everyday is a reminder of how beautiful each day is.
Keep up the good work Ronny. Thank you
Very well written and spot on! Neuroendocrine tumour can be a slow growing disease but that in itself brings challenges as you so rightly point out. NET patients generally look well and as you said in a previous blog, can have a ‘stable’ disease. However, stable and slow growing do not equal life as normal or even quality of life. Carcinoid symptoms, treatments, incredible fatigue and the challenges of dealing with a chronic health condition, take their toll over time. I do feel ‘lucky’ that i have Nets but sometimes i also think its a right bugger!! 😂
A “right bugger” sounds like a good blog title 😀
Thanks Ronny. So true. My husband is so brave. But he doesn’t have much guts! They removed his stomach, spleen, pancreas, gall bladder and duodenum. Living with the consequences is a real challenge.
Good luck Shiela, please give him my best wishes.
Great blog Ronny 😀
Fantastic blog and entry…70CM of my small intestine removed..I get it 🙂
Bright! Simple and true…
thanks, it is a very simple message!
Greta Blog Ronny. 🙂