Cancer Forum Recommendation for Friend

May 1, 2024 7:13 AM

My (non-US, English-speaking) friend has undergone 2 cancer-related surgeries, and is now frustrated that his doctor has suggested follow-up medication treatment - because he was told the purpose of the 2nd surgery was to avoid this - and he's also unsure about whether the side-effects will warrant the precautionary benefit. I suggested looking on cancer forums to find folks who have encountered similar choices, or have experience with the medication in question, but I realize specific recommendations would be much more helpful - can anyone help me with this?

The information above is all I have so please forgive me for not including greater detail. Also, I have previously lived in my friend's country, and culturally it has a strong authoritarian bias - i.e. you don't question the person in authority - so I'm guessing his relationship with his doctor is different from what most folks are used to, which in turn may be impacting his ability to use that route to push for further details.

posted by my log does not judge to Health & Fitness (5 answers total)

Reddit probably does this pretty well. I would search on the type of cancer, the type of surgery, or the type of medicine regimen to find a group.
posted by toodleydoodley at 7:23 AM on May 1 [1 favorite]

I can second that the Reddit Braincancer community is relatively well moderated, can't speak for the others.
posted by cobaltnine at 8:46 AM on May 1 [1 favorite]

SmartPatients.com has communities for many different kinds of cancers. It’s been a big help to me since my own diagnosis.
posted by FencingGal at 11:09 AM on May 1 [1 favorite]

Princess Kate, wife of heir to the British throne, is undergoing precautionary treatment, as I did, for a gynaecological cancer. I'm glad I did although I only took minimum doses. I'm five years free and who's not to say that those doses didn't kill rouge random cells that could have grown into secondary tumours.
posted by Thella at 1:41 PM on May 1

In addition to SmartPatients, I also found Inspire quite useful when navigating my mother's cancer care and options. The thing to keep in mind with these sites (including Reddit) is that you get all kinds of people contributing, and while there can be loads of useful information and helpful anecdotes, there's also a lot of woo and some distressing content, as there are contributors from all parts of the cancer spectrum. That can be a little overwhelming. My mother found it too confronting and not useful. But as someone once removed from the diagnosis, I found it quite helpful in getting a sense of how people were experiencing different treatments, what sorts of trials were going on, and I think it helped me be able to do better research and ask better questions in my mother's interactions with her oncologist and help give her context for some of the options being offered. I'm just noting this because your friend might need some help in using sites like this to research their situation.
posted by amusebuche at 3:52 AM on May 4