Sometimes people are nervous when speaking to someone diagnosed with cancer. They are embarrassed, they don’t understand the specific cancer, they don’t understand the prognostics and are scared to ask more. News outlets and social media don’t really help them get to grips with these situations, everyone is receiving chemotherapy and will therefore lose their hair and everyone is going to die right? Wrong, the cancer story is changing. Sure, many people do die of cancer, and that’s heartbreakingly sad. But today, many cancers are now treatable, many people survive, some even living with cancer like they would with a chronic disease. Many have their cancer removed curatively when caught at an early stage.
Neuroendocrine Tumours (NETs) are no different in this respect to many other cancers; but with one particular exception – they are a heterogenous collection of primary types, each with its own vagaries and special terms used. With NET, you can have a primary in nearly every part of the body, you can have low or high stage, low or high grade, well differentiated or poorly differentiated (deemed a carcinoma in this case), indolent or aggressive, functional or non-functional, hereditary or sporadic (non-hereditary), it’s a minefield.
I’m guilty of these minor social misdemeanours too, no-one is perfect but certain comments can come over all wrong and get people’s backs up, despite the best intentions of the commentor. So here is my take on what you should not say to someone with NETs.
1. “You’ll be fine, I heard that NETs are benign and not really a proper cancer”
Firstly, the word benign does not mean something isn’t a tumour or cancer. – so context is really important. Secondly, the word benign was removed from the World Health Organisation (WHO) Digestive Systems classification scheme in 2010 when that edition was based on the concept that all NETs have malignant potential and has therefore abandoned the division into benign and malignant NETs and tumours of uncertain malignant potential.
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2. “Oh, you have the good kind of cancer!”
3. ”How was chemotherapy? Your hair looks great now!”
If there’s a word which is synonymous with cancer, it’s chemotherapy. It’s what most people have in their mind when they are talking to a cancer patient…… ‘have you had chemotherapy‘ or ‘when do you start chemotherapy‘. I was nonchalantly asked by a friend some time ago ‘how did you get on with chemotherapy’ – he was surprised to hear I hadn’t had it despite my widespread disease. Cue – lengthy explanation! I wasn’t annoyed by the question; I just think people automatically assume every cancer patient must undergo some form of cytotoxic chemotherapy. If you read any newspaper article about cancer, they do nothing to dispel that myth, as many articles contain a story about a cancer patient with no hair due to the treatment.
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4. “You should try eating (…..name the latest in a list of thousands of trendy cancer-curing diet or food……), I saw on the internet the healing effects are miraculous”
Normally followed by “I can’t remember the source or if it was written by an expert in your cancer, but it sounded true to me, it’s worth a try” ….
I see this day in day out including many people trolling my site, apparently this trendy food is all I need to cure my incurable cancer!
5. “I read this thing on the internet about an alternative therapy that a person says is curing their cancer. The person has even written a book about it”
Also followed with “I can’t remember the source or if it was written by an expert in your cancer, but it sounded true to me, it’s worth a try”….. People living with cancer already have massive amounts of information to absorb from the medical professionals who are treating them. Suggesting unproven, non-peer reviewed/medically-approved alternative therapies that you’ve read about on Facebook just isn’t helpful.
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6. “Are you sure you have cancer, you look too well to be that ill?
And the favourite of many. That said, I kinda like looking well!
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Summary
I guess that could have been a longer list but there are more below which are also relevant. I also think many are applicable to the battalions of caregivers out there, they can be affected and offended too!
thanks for reading.
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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You definitely hit on a couple of my pet peeves! Unwanted and unsolicited advice from people who have no idea what they’re talking about, but who saw something that “sounded true to me” on the internet, drives me crazy!