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Ronny Allan
Opinion
Words are important
I was diagnosed with stage IV cancer in 2010. OK, it wasn’t a really aggressive type, but it had caused a lot of damage. It’s amazing to think that someone is still adding to their stage IV cancer story since diagnosis of “incurable cancer”. You can read a chronological list of what happened to me and what treatment I had (and still get) by clicking here.
So, am I terminal? No, in my opinion, and by any stretch of the imagination, someone who has lived with stage IV cancer for 13 years (2023) cannot be considered terminal. Let’s look at some definitions which are generally agreed with similar wording wherever you look:
Terminal Cancer
Terminal cancer refers to cancer that can’t be cured or treated. It’s sometimes also called end-stage cancer. Any type of cancer can become terminal cancer. (Note: end stage is a synonym for terminal cancer, not the final stage in cancer staging terminology). I’m conscious that with terminal cancer there can be legal ramifications to certain definitions (wills, life insurance, disability etc) and that these may differ on an international/federal basis. Hang on …… many, many, many Stage IV NET patients are being treated whether it is debulking surgery or a 28-day injection and many things in between.
To emphasise where I’m going with this debate, I chose these definitions from a couple of ‘big hitter’ and ‘authoritative’ cancer 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.”
Advanced Cancer
Advanced cancer is different from terminal cancer. Like terminal cancer, advanced cancer isn’t curable. But it does respond to treatment, which may slow down its progression. Terminal cancer doesn’t respond to treatment. As a result, treating terminal cancer focuses on making someone as comfortable as possible. The American Cancer Society defines it as “Advanced cancer is most often used to describe cancers that cannot be cured. This means cancers that won’t totally go away and stay away completely with treatment. However, some types of advanced cancer can be controlled over a long period of time and are thought of as an ongoing (or chronic) illness.” So if you have interpreted these definitios, you will see that “advanced cancer” is a more accurate descriptor for most Stage IV NETs than “terminal cancer”. Ergo it’s “incurable but treatable”.
Incurable Cancer
Stage 4 cancer usually can’t be cured. In addition, because many cancers are not diagnosed until there are distant metastases, it is unlikely that most cases of incurable cancers can be completely removed. The goal of treatment is to prolong survival and improve your quality of life. It follows that some advanced cancers can accurately be described as “Incurable but treatable”. The length of time treatable will have an effect is variable and subject to many factors.
There are always outliers in any spectrum of outcomes.
The Cancer story is changing
What I also found during my research is that as more and more people are now living with and beyond cancer (all cancers) rather than dying from it, there is a new class of patients emerging – Macmillan UK calls this “treatable but not curable” and I believe this is very relevant to Neuroendocrine Cancer. I call it “Incurable but Treatable” but I’ve always been a disruptor (but a positive disruptor) – I just think it’s easier to say and sounds more positive.
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.
As people live longer with cancer, medical science continues to advance providing hope for better treatments to be introduced.
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.
Palliative Care
Whilst we’re on this subject, please note Palliative Care is not just end-of-life/hospice care, the scope is much wider. Read more here.
Improvements need to be made though, changing its name is a good start.
Why is this a myth?
The reason this myth spreads in NET circles is due to a number of problems. Firstly bad awareness messages where the focus is on stage IV patients who were misdiagnosed and have carcinoid syndromes. Certain advocacy organisations and healthcare sites need to get a grip! Secondly, badly moderated patient groups then let this myth run wild because the admin teams don’t know any better. Because of the misleading awareness messages, some people then apply this to every single NET patient. They don’t seem to be aware that there are many low stage low grade patients out there, have had surgery to remove their small localised tumour with curative intent and biopsy proven ‘R0’ margins. They don’t seem to be aware that NET epidemiology studies suggest the vast majority of these particular cases will not return or metastasise. They don’t seem to be aware that there are other syndromes in NET. Not everything is about that misnomer syndrome and neither is everything about flushing and diarrhea. Moreover, they don’t seem to be aware that flushing and diarrhea can present in many illnesses or in side effects; and that other types of NET can have these symptoms – it’s not all about serotonin secreting types.
I will not let this type of myth persist in my own patient group and this is only one myth of several that I tend to see daily. Read more myths by clicking here or on the picture below.
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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Ronny as always you are very positive.Howeverwe must be careful with the words we use.There are people getting benefits as they are determined as terminal.
I hear you but I was very careful with the words. The context was set by the definitions and the definitions are not mine, they are authoritative sites.
As for the 12-year thing, I said it was my opinion but the definitions seem to back up what I said. I also said, “There are always outliers in any spectrum of outcome”.
I also said, “I’m conscious that with terminal cancer there are legal ramifications with the definitions (wills, life insurance, disability etc) and that these may differ on an international/federal basis”. I took that into account, but it does not change anything else in the blog post which is also bound by my disclaimer.
I really appreciate you for sharing your story, experience, and knowledge. As champions go, you are right up there with my wife, Camille. She began to blaze our path to NETRF, NET specialists at University Iowa Holden Cancer Center and University of Chicago. Less than a month after my ultrasound and MRI and 5-10 days after the biopsy results came back PNET we were scheduled at both of these outstanding institutions. The scans showed innumerable lesions in both lobes of the liver and a primary on the tail of the pancreas. Full body scans showed no further involvement. That was early summer 2019. After 3 months on lanreotide, Dr Keutgen, the UofChi NET team leader moved us on to the medication combo CAPTEM for about a year+ which provided dramatic reductions in the primary and liver. Mid-November 2020 Dr. Keutgen, removed the primary and nearly all of the liver lesions (plus gallbladder and spleen were removed but uninvolved with disease) in a 7-8 hour surgical procedure. After 7 nights in their hospital, recovery at home was mostly steady, nearly complete by mid-January, and involved only modest pain which was managed with extra strength Acetaminophen supplemented occasionally with Tramadol and 2 nights on some stronger stuff to help make for more restful sleep.
Today, I too have an incurable metastatic cancer – a chronic condition. The only thing in my life that I would describe as innumerable are the stacks of blessings that I have experienced every day since June 2019 and will experience for years to come.
I keep a long written list nearby and look at it often.
God bless and Happy Thanksgiving to all.
Keith
thanks Keith – great comment
This is a great article. My case sounds very much like yours. My health is slowly deteriorating but I’m not sure it’s the cancer. Thanks for your great work.