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Ronny Allan
Metastatic Neuroendocrine Tumours – incurable is not untreatable.
When I was being officially told I had advanced and incurable cancer, I did what most people seem to do on films/TV ….. I asked “how long do I have“. The Oncologist started off with the worst case and that must have been quite a shock because for a few moments after that, I heard nothing – my brain was clearly still trying to process those words – I wasn’t even feeling unwell!
The really important bit I missed was him go on to say “…but with the right treatment, you should be able to live for a lot longer”. Fortunately, my wife Chris heard it all and I was refocused. “OK Doc – let’s go” I said. Always take someone with you to take notes at important meetings with Oncologists!
What is incurable cancer?
It’s widely accepted that stage 4 in general cancer terms gives it the label of ‘incurable’ (clearly there can be outliers as is normal with cancer scenarios). What is different in certain stage 4 cancers including well-differentiated NETs is that stage 4 is not the ‘red flag’ it is with more aggressive cancers.
There’s an emerging term in UK called “Incurable but treatable” – the inference is that it is manageable and similar to treating a chronic condition. Some people will have incurable but untreatable cancer from the moment they are diagnosed (i.e. stage 4). Others develop it if their cancer progresses or comes back (i.e. re-staging to stage 4). You may hear some of these cancers described as “advanced”. Sure, you eventually may die due to your incurable but treatable condition but that can also happen with a chronic condition.
While not curable, some of the cancers fitting into this category are generally considered treatable if treatments are available that could be used to slow the progression of cancer and help people to manage their symptoms. Advances in treatment and care mean people can now live for many years with “incurable but treatable” cancer. In some ways, it may at times feel like living with a long-term chronic condition.
The Cancer story is changing
What I also found during my research is that as more and more people in the UK are now living with cancer (all cancer) rather than dying from it, there is a new class of patients emerging – Macmillan UK call this “treatable but not curable” (I prefer “incurable but treatable” giving it a more positive spin). I believe this is very relevant to Neuroendocrine Cancer. I touched on this in an awareness blog entitled “Living with Neuroendocrine Cancer – it takes guts“. You will find some data in this blog about a major increase in the amount of people with cancer who eventually die of something else (…… basically it has doubled). For many, Cancer is no longer a death sentence. I do accept that it can be difficult to live with certain cancers and this is also covered in my “it takes guts” blog linked above.
Definitions are important so what does ‘terminal cancer’ actually mean?
I’m conscious there are legal ramifications with the definitions (wills, life insurance, disability etc) and that these may differ on an international/federal basis. I therefore intentionally confined my searching to a couple of ‘big hitter’ and ‘authoritative’ sites:
Cancer Research UK defines terminal as “When cancer is described as terminal it means that it cannot be cured and is likely to cause death within a limited period of time. The amount of time is difficult to predict but it could be weeks to several months”.
The American Cancer Society defines terminal as “an irreversible condition (it cannot be cured) that in the near future will result in death or a state of permanent unconsciousness from which you are unlikely to recover. In most states, a terminal illness is legally defined as one in which the patient will die shortly whether or not medical treatment is given.”
Can terminal as defined above be applied to Neuroendocrine Cancer?
I’m sure it can, e.g. with very advanced and extremely aggressive disease and for any grade when considering the condition of the patient and other factors (secondary illnesses/comorbidities, refusal of treatment etc). Clearly, that is a terrible situation. I’m also conscious that some people do eventually die because of this disease or its consequences and that is also terrible.
How long is a piece of string?
I think with most Neuroendocrine Cancer patients, “how long do I have” can be a tough question to answer. Thinking back to my own situation, although it was an obvious question to ask my Oncologist, I can see it might have caught him unawares. I suspect he was erring on the side of caution as I don’t believe he or anyone else had formulated my treatment plan ….. i.e. my case had not yet been looked at by a Multi-Disciplinary Team (MDT), a bit like a ‘Tumor Board’. I had already been confirmed Grade 2 (via liver biopsy) and my CT scans were indicating widespread disease (Stage IV). I was yet to have an Octreotide scan and the conventional biochemical markers (CgA and 5HIAA). I suspect, faced with my question, he went for the worst case, based on the statistics he had access to at the time. What I now know is that, in the year of my diagnosis, the median survival was 33 months in patients with advanced Grade 1/Grade 2 NETs with distant metastasis but without treatment. These statistics are certainly better when you get treatment, but my Oncologist was probably on the right track. However, at no time did he use the word ‘terminal’ because treatment was on his mind. In fact, it’s possible he was trying to say, “you may be incurable, but I can treat you”.
I continue to see quite a few posts and articles about death and dying and I noticed some patients were using the word ‘terminal‘ to describe Neuroendocrine Cancer, despite in some cases, having been diagnosed some years ago, despite in most cases in reference to well differentiated diagnoses. This label is not just confined to use within Facebook forums, I’ve also seen this on wider social media including twitter, blogs and newspaper items. For some, this appears to be the prognosis given to them by their doctors. I find this surprising. However, I’m much less surprised to see many comments on forums from people who had been told the worst by their doctors but were still alive and kicking WAY beyond those worst-case prognostic statements, including the higher-grade cases. Oncologists don’t have crystal balls so even if they give a figure, it really is just a guess.
Survivorship and Hope
You can find numerous examples of long-term survivors of advanced Neuroendocrine Tumours on the ‘airwaves’, many with a relatively good quality of life (QoL). I don’t normally pay much attention to prognostic data, I take my lead from the huge number of patients living a long time with Neuroendocrine Cancer. There has been a plethora of new treatments coming online e.g. PRRT is making a difference for some. Many more are entering and progressing through the approvals pipeline. Also listen to a NET Expert along the same lines.
Some myths
Because of the misleading awareness messages and badly moderated patient groups, some people seem to suggest that “incurable” applies to every single NET patient. This is very misleading and way out of context with accepted epidemiological data. The other worrying area is where people are suggesting that any stage IV diagnosis is ‘terminal’. While that may be the case for some, when you study the definitions in cancer circles you can quickly see thar the majority of low-grade high stage NETs are incurable but very treatable. The use of the word terminal out of context (see definitions above) could unnecessarily frighten people.
Read more about this issue by clicking here or on the picture below.
Summary
Following my diagnosis in 2010, I went on to receive really good treatment and it continues to this day with Lanreotide backed up by a rigorous surveillance regime (and this is backed up by my own advocacy!). However, I have totally accepted the fact that I have metastatic Neuroendocrine Cancer and that it cannot be cured. By the way, I intentionally used ‘metastatic‘ rather than Stage IV. Mention of Stage IV can set off alarm bells and send the wrong message to the recipient. I don’t believe Stage IV has the same ‘red flag’ meaning for well-differentiated NETs as it does with more aggressive cancers of the same stage. Given what I know now, I would certainly challenge any doctor who told me I had a ‘terminal disease’ and at the same time told me I had a slow growing well differentiated Neuroendocrine Cancer.
I now live with this disease (….and its consequences) and do not feel like I’m dying of it. Moreover, I most certainly do not see myself as a ‘terminal’ cancer patient, particularly as I’ve now been living with it since 2010. I like to focus on how I can live better with it.
In fact, I’m not sick, I just have cancer is strangely how I feel.
Whilst we’re on this subject, please note Palliative Care is not just end of life / hospice care. It’s more than that. Read more here.
Disclaimer
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.
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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My children’s father was diagnosed with neuroendocrine pancreatic cancer with liver metastasis (dual lobe 20 tumors) in Sept 2016. He was seen at Dana Farber in Boston and was told he was not a candidate for surgery. He was treated with Sandostatin injections monthly for about year and a half. Last spring, his liver tumors got much worse, lots of pain etc. They then tried chemo pills CAPTEM. He was on that for 4 or 5 months and last fall he found out MSCC and received radiation for a tumor that went to his vertebrae. That seemed to be knocked out. Once that was done, he was started on FOLFOX. He did 8 rounds of FOLFOX. His local oncologist scanned him in March and determined that FOLFOX wasn’t working and wanted to refer him back to Dana Farber. He decided to go to Roswell and had a gallium scan on 4/22. He sees doctor on 4/25. Any thoughts on his outlook? He’s 53 yrs old. Thanks in advance and much love to all.
Sorry to hear of these issues. Dana Farber Boston is a well known NET centre but a second opinion on surgery might be useful to hear. Your question is difficult to answer because you have not said the grade, differentiation and Ki67 number of any biopsy sample. This can normally be found on the biopsy report or summarised in a letter from the specialist.
Just saw your article and found it very interesting. Two years ago I was found to have malignant neuroendocrine carcinoid of the colon I had a colon resection which was very successful. I have been on the somotuline depot injection monthly since that time. More recently it was found that to have metastasied to the liver. I have recently had the Y90 liver embolization which did shrink the tumors but did not kill them. I have also not had any of the obvious carcinoid symptoms. However, while I am doing better I am not yet back to being myself. I have good and bad days. Thank you for sharing your story.!
Good luck with your treatment!
Thank you for your reply! He has no physical symptoms – well and fit, not even any flushing! Biopsy was taken from one on lumps in pelvis which was a bit tricky, but at that time they didn’t know about the liver and lymph nodes. He has been passed from local hospital (not so good) to The Christie which has a special team. Luckily it is just a couple of miles away, and the prof in charge conducts a lot of the European trials (prof juan Valle). We have limited the people who know about the situation but it is so difficult when people keep asking. I am listening lots, researching, making notes as my husband doesn’t really want to think about that yet. I can’t believe he doesn’t even feel slightly ‘rough’. They have used blood serum tests to check for hormone indicators but don’t have actual results – they just rang last week to say they would start ‘hormone treatment’ this week. Still waiting for scan to show hotspots to try and locate primary and to see if it has spread elsewhere. NETs are crafty little buggers that seem to get everywhere. Onwards and upwards and my best wishes and hugs to you and
your amazing wife!
good luck with the blood results and let me know how you get on. Always got copies of these, you will know why downstream! Christies has a good reputation.
Hi. My husband has just found out he has secondary NETs in lower pelvis and lymph nodes, mets in liver, unknown primary though he is on a waiting list for a gamma scan to check for primary location and any other hot spots. Grade 2. He has no symptoms and wouldn’t have known if it were not for coccyx pain (which was not related but coccyx was reset). They will not consider any surgical treatment not any treatment to liver, though liver growths are all less than 1.5 cm, which is very frustrating. He is starting hormone therapy this week which we have been told will hopefully halt the growth. Am feeling quite despondent. How is your wife managing to cope? One moment we feel positive and then something small sets everything off. We have the holiday of a lifetime booked for summer (3weeks in Italy) and I am hoping he will feel well enough for that. Are side effects of hormone treatment problematic? He is planning on working for some time yet. Btw your posts are inspirational!
Sorry to hear about your husband Charly. I hope the Octreotide Scan copy firms the primary (is this what you mean by ‘gamma’ ?). Presumably, grade 2 has been confirmed via liver biopsy? I hope the somatostatin analogue (Lanreotide/Octreotide) therapy does some good. I thought they needed some confirmation that he was somatostatin analogue ‘avid’ before prescribing this – most people will be though. The Octreotide /gamma scan normally confirms this. The side effects of Lanreotide /Octreotide are variable from person to person but most people tolerate it very well. Check out my blog 5 Years of Lanreotide https://ronnyallan.wordpress.com/2015/12/09/5-years-of-lanreotide/
My wife and I cope OK but we’ve been here a while and there are many many people been here a much longer while than me! The treatment phase just after diagnosis is a testing time. The main thing I would say is that a grade 1 or 2 NET is not really aggressive. I don’t want to second guess your medical team but perhaps they want to find the primary (thus the gamma scan) and then take a view on which surgery to do and when. Can I ask where you are being treated and is it a NET Centre? Do you know Chromogranin A and 5HIAA results?
thank you 🙂 I am living the same here in Belgium. Thank you for giving me hope, I do still work and have fun with my friends too ! And I will go on this way depsite of bad symptoms and hard days sometimes ! Cool to know that I am not alone !
nice to hear from you Kateb!
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Thanks for this Ronny. We found out my wife had a metastatic midgut (pancreas) NET 2 days after our first daughter (July 2016) was born and had other complications that made survival extremely unlikely. Thanks to Lanretide/Octretide injections, radiotherapy (PRRT) and significant intervention from her Consultants we are now starting to turn this corner as well, understanding that “months” can instead mean years and “years plus”as opposed to the bleak future we imagined only a few months ago…
that’s good to hear Paul and I really hope everything works out. Long road ahead and important to keep on top of it. Good luck with everything and keep in touch!
Terminal. Incurable. Semantics. Whatever we call it, we live with cancer as millions of people with terminal/ incurable diseases do. The horizon are the years ahead. It is there but no need to fuss about it much. We don’t control the winds of life that blow. So, like you, every day I get up, I set my sails ( because that I do control) and make it the best that I can. I plan for 6-12 months out. Every month I get a new month. It is a glorious life and adventure. Keep setting your sails everyone.
I like the sailing analogy 😃
Excellent reading ! I’m struggling at the moment thinking the same “how long left as it’s been 4yrs in june since I was diagnosed.
On the bright side I’m about to start my 2nd session of PRRT.
Thanks again ronny .
Thanks Allan. Good luck with the PRRT!
Hi Allan. I.m almost in the same situation as you. The symptoms of the illness startee some 10 years ago and I’ve been diagnosed in february 2011. After 4 years witj sandostatine and a completely normal life, I’ ve received my first injection of PRRT in december. Second injection is for march.
Ronny, thanks a lot for these “thoughts”. I feel well alive as well, even if I have a lot of metastasis, on the liver, the stomach and even one on a bone. The best way to fight is to stay positive even if it’s sometimes really hard especially when you think about your kids.
Let’ s continue the fight !!
Thanks you for your support 😆
Just read your story, good luck to you, stay strong and keep fighting, this is what i tell my 26 year old son who also has stage 4 metastatic neuroendocrine liver cancer, , also small bowel,,, , iam still trying to cope and learning about this rare disease…
Sorry to hear about your son Darlene. Is his primary small bowel with secondary liver tumours (this is normally the disposition). ?? Was it “Low grade” ?