Went to another PC support group tonight, The FOPS (Friends of Prostate Sufferers). It's just off M25 J18 (Chorleywood).
This was a fantastic session. The talk is purely about PCa diagnosis and treatments. The format is a presentation, followed by an interactive session run by a couple of consultants. The consultants there today are urologists from Mount Vernon and UCL. I believe my oncology consultant is there sometimes. I didn't count up at the time, but thinking back, there were probably 30-40 people there - apparently there are usually more.
Today, the presentation was about a number of upcoming trials for advanced PCa, and was by a senior research nurse from Mount Vernon. One of the trials was about using Pembrolizumab (Keytruda) immunotherapy in combination with the second stage stage HT drugs and chemo, and in response to questions, she also went into detail about immunotherapy in it's own right - the history of it and what we understand so far, and genetic mapping.
The consultant session starts with new members introducing themselves, how they got diagnosed, their treatments past and future, etc. There were 3 new members including me, but this actually forms most of the session because the consultants take many of the points raised and go into detail explaining how things work. For example, the first new guy mentioned tamsulosin, so one of the consultants who had done the original trials on the first alpha-blocker (a predecessor to tamsulosin) went into detail about how it works, and contrasted it with how the drug to prevent bladder spasms works (can't recall what that one is). For those of us pre-radical treatment, they discussed our proposed treatment and other possible treatment options, with the pros and cons. This was useful for me - a bit like a second opinion. They would have offered me a RP in spite of being high risk T3a, but agreed I'd also need RT anyway, and that the path I'm currently on (whole pelvis RT and HDR Brachytheray) is probably as good, and stands a better chance of retaining erections, etc as I would not be a candidate for nerve sparing RP.
After the session, people mingle and chat, and several people came up to chat with me about the various things I'd said during my introduction. I had my medical notes with me, and one of the consultants looked through it and made some useful comments, and the research nurse was very interested in the work I'd done on Tamoxifen dosing for gynecomastia (and jokingly offered me a job at Mount Vernon;-). Apparently, they also prescribe Tamoxifen to reduce hot flushes, which was not something I'd come across.
I would strongly recommend this group to anyone who wants to have a detailed technical chat with expert consultants, in a friendly humorous atmosphere with a glass of wine or cup of tea/coffee/biscuit as you like.
They are the first Wednesday of the month 7.30pm to 9.30pm, but they skip July due to holidays.
EDIT: They are usually the 3rd Wednesday of alternate months starting with January, but this sometimes has to be changed due to consultant availability. Check on their website and/or "like" their Facebook page to be notified.
A few days ago, I also joined a countryside walk by the Reading Prostate Cancer Support Group to a pub for lunch. This was a good opportunity to chat with other PCa patients and their wives, something for which there isn't much time during their formal meetings. They decided to offer me one of their places at the Tackle AGM conference next week in Birmingham, which I'm looking forward to. If anyone else on here is also going and wants to say hello, PM me.
Edited by member 24 Feb 2020 at 07:10
| Reason: Update for dates of The FOPS prostate support meetings