23 November 2020: After prostate cancer treatment, I felt isolated and uninformed while weird stuff continued to happen to my body. Now at last I am tapping into the value of prostate cancer support groups locally and globally. My first ideas had been crushed: Practically, the local CANSA support group system fell apart under the Covid-19 lockdown. And my doctor said “beware of the responsibility of starting your own group.”
But the worst thing about prostate cancer, incontinence and erectile dysfunction is the way it often makes survivors withdraw and keep silent. I am finding it blocks the very camaraderie and care that I need most. So I’ve kept searching.
The first support groups I found seemed consumed by talking about money and medical technology – where is the miracle cure, and will my medical insurance cover it? I want more human connection and I doubt there are any quick fixes for me.
In the last weeks I have been busy on Google and I’ve joined several groups. I’m sharing some of my favourites – and trusting each reader will find their own.
My favourite prostate cancer support groups
- My first and best is the Prostate Cancer UK Online Community. You can join for free from anywhere, and I have found the ethos of the group is down to earth and practical, with lots of generous contributors who really engage as soon as you post a query. There are excellent categories allowing you to focus on what matters to you. I have already made friends here!
- In South Africa where I live, there is a very friendly email-based group specifically focused on men who have had Radical Prostatectomy surgery. Anybody in Africa can request to join.
- Not for the prudish, but very down to earth is the Fetlife Prostate Cancer Survivor Group (warning: site contains graphic sexual content). My coach recommended this when I was lost and alone and felt like nobody would talk about the more intimate challenges of prostate cancer treatment. Don’t go if you are put off by the kinky and out-there context of the site. But I can confirm that the members are frank, generous, direct and open about all the awkward stuff many others are too scared to talk about.
It helps when those on the group have similar concerns to you. I’ve also found I am comfortable in groups where partners (of any gender) are welcome and also active.
At last I am feeling connected with communities of men and their partners around the world, who are going through something similar to me. I’ve been trying to share my story with friends and family but not making much headway except with my nearest and dearest. Now I find I can chat freely online with fellow survivors.
The secret to getting support: just ask
Online support groups offer a private and safe place to talk about things that matter. Many topics are hard to discuss. Here are some of posts I have made in support groups that have generated support.
- Emotional support and relationships
- Am I on track to get natural erections back?
- Talking to partners
- ED and loss of libido
- Penis pumps (vacuum erectile devices)
- Hormone levels
Your questions may be different. The support groups that suit you might also be different. It’s worth finding your own support niche. And get out there and get talking about what matters to you.
Don’t let cancer, incontinence or erectile dysfunction isolate you.
Postscript in 2021: more global prostate cancer support groups
Since November 2020, I have found more groups and these are listed in my Resources section.
And, six months after my doctor told me not to start my own group, I went ahead and did it anyway. We now have a thriving Recovering Men global support group that meets once a month. You are welcome to join.
[Editor’s note: See also The more primal the loss, the more we are called upon for radical change]