Some might think this is an odd post for someone with a massive online patient group for cancer. Well, putting aside my disclaimers, group rules about ‘advice’ and the strong moderation approach, I totally agree with you (thus my approach to running a group). In the past, I have written about the dangers of advice from those who mean well but in inadvertently give you not so good advice.
I even wrote a critique about patient support groups in my own area of Neuroendocrine Cancer where I suggested they could be frighteningly good but also good at frightening. However, while the issues raised in this post could certainly apply to badly moderated online (and offline) patient groups. it definitely also applies beyond them, including on social media in general. Some of the comments made by non-healthcare professionals will be fairly innocent stuff, even fairly high-quality stuff, but some may be downright dangerous for your individual situation and your particular cancer diagnosis.
Inside and outside patient groups. many newly diagnosed cancer patients will have experienced this flood of sympathy along with oodles of empathy. Some will also have been hit with a tsunami of advice. e.g. Try this treatment; eat this food; go to this place; look at this site. I was actually prompted to write this particular post after reading a brilliant article in my newsfeed (I will link to it below). This doctor talks about one of his patients arriving drenched in a herbal potion promoted as a cure. Another patient asked if he should starve himself to starve the cancer. The doctor was quick to state that a lot of unsolicited advice is astonishingly bad but still seems to find its way onto cancer patient’s internet search results and inboxes. This is not surprising, cancer is a big business and profitable too, so it’s bound to be exploited by unsavoury types who are only after money and don’t really care about the recipient or source of their product.
I’ve written about these issues several times in my “The Trouble with the NET” series, a spin on the dangers of the internet and my own condition – a metastatic Neuroendocrine Tumour (NET). But this really applies to anyone with cancer. You can browse the series by clicking here (or on the picture below).
As Dr Ranjana Srivastava states in the link below “Patients deserve better”.
Click on the blue link below.
I’m an oncologist. This is what King Charles and my cancer patients have in common | Ranjana Srivastava | The Guardian
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.
Click here and answer all questions to join my private Facebook group
Check out my Glossary of Terms – click here
All you need to know about Peptide Receptor Radionuclide Therapy (PRRT)May 8, 2017Clinical Trials and Research
Neuroendocrine Tumours (NETs) – Vitamin D (Cholecalciferol / Ergocalciferol)March 17, 2026Diet and Nutrition
CAR-T clinical trials for Neuroendocrine Cancer (plus bonus section on CAR-NK)August 31, 2024Clinical Trials and Research
FDA Tentatively Approves Generic PRRT Lutetium Lu 177 Dotatate (177Lu-PNT2003) in GEP-NETs (plus news of a new SSTR PET!)January 12, 2024Treatment
Please Share this post for Neuroendocrine Cancer awareness and to help another patient
Discover more from Ronny Allan - Living with Neuroendocrine Cancer
Subscribe to get the latest posts sent to your email.
Re: friends – I have had the most bizarre reactions since discovering my NETs (Grade 2, Stage 4 sm. bowel to Liver). I had someone tell me to ‘Go Pray’ (I am not religious, neither is he). Most of my ‘friends’ cut off contact (are they afraid of catching it?). I spoke very little so as not to upset them, but clearly the responses are strange. In retrospect, I should not have mentioned that I have cancer (even after losing 35 lbs.) Healthier now, but with less friends.
Yes I feel the same way always listen to your specialist. I think people find themselves so desperate for so called cures and whatnot they will listen to anyone.