Home » Awareness » Neuroendocrine Cancer – Incurable vs. Terminal

Neuroendocrine Cancer – Incurable vs. Terminal


Graphic courtesy of Macmillan Cancer Support

Graphic courtesy of Emily McDowell Studio

When I was being officially told I had an advanced and incurable cancer, I did what most people seem to do on films/TV ….. I asked “how long do I have“.  The Oncologist said ” … perhaps just months“.  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!

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. 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.

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 very aggressive disease and also taking into account 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 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.  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.  These statistics are certainly better today but my Oncologist was probably on the right track.  However, at no time did he use the word ‘terminal’.

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” and 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.

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.  However, I was particularly interested to read a set of USA statistics from NOLA (Boudreaux, Woltering et al) which said “Our survival of stage IV midgut NET patients that we performed surgical debulking on was published in the Journal of the American College of Surgeons in 2014. It showed our 5, 10 and 20-year survival rates were 87%, 77% & 41% respectively. It’s also worth noting the comparison with the 2004 SEER database analysis which listed the 5 & 10 year SEER survival at 54% and 30% respectively”.  Clearly, the NOLA figures are guidelines (and only for midgut) but they do seem to reflect my previous statement about seeking out positives rather than dwelling on the negatives.  The SEER 2012 figures stated “Survival for all NETs has improved over time, especially for distant-stage gastrointestinal NETs and pancreatic NETs in particular, reflecting improvement in therapies.

Exciting times ahead

Recently, there’s been a plethora of new treatments coming online and more entering and progressing through the approvals pipeline.  Check out my blog entitled Exciting Times Ahead Also listen to a NET Expert along the same lines.

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 4.  Mention of Stage 4 can set off alarm bells and therefore 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 also told me I had a slow-growing well differentiated Neuroendocrine Cancer.

I live with this disease (….and it’s 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 for almost 7 years. Rather, I like to focus on how I can live better with it.

Whilst we’re on this subject, please note Palliative Care is not just end of life / hospice care.  That’s another misunderstanding bordering on mythical status. Read more here.

Thanks for reading

Ronny Allan

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19 Comments

  1. Blythe Repp says:

    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.!

    Liked by 1 person

  2. Charly says:

    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!

    Liked by 1 person

  3. Charly says:

    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!

    Liked by 1 person

    • ronnyallan says:

      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?

      Like

  4. kateb nasser says:

    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 !

    Liked by 1 person

  5. […] is the full link: Ronny Allan Please be sure to check out his […]

    Liked by 1 person

  6. Paul says:

    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…

    Liked by 1 person

  7. Susan says:

    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.

    Liked by 1 person

  8. Allan says:

    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 .

    Liked by 1 person

    • ronnyallan says:

      Thanks Allan. Good luck with the PRRT!

      Like

    • Kreit says:

      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 !!

      Liked by 1 person

  9. Darlene harrison says:

    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…

    Liked by 1 person

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