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 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.