I am the Group Leader for WhiSPer and this is my story.
I am a retired NHS psychiatrist. My clinical work was with people with severe mental illness. I had a role in training for doctors which led to me training in education, and a coaching qualification.
I was diagnosed with prostate cancer (PC) in October 2015, after my husband suggested we sent bloods off to an online company for a general health check, soon after my 50th birthday. A raised PSA was confirmed by the GP who referred me to Urology on the cancer pathway. Scans and a TRUS biopsy showed PC at the edge of my prostate, Gleason 3 + 4, with no detectable spread.
I found I very much wanted to hear what others had been through, to understand their experiences and to bring to life the many possible outcomes that I read about. My clinical nurse specialist advised me against the local group on the grounds that it was an unchanging group of men older than me and their wives. She wasn’t sure how much they talked about the nitty-gritty.
Metro Charity in South East London had started a group for LGBT people affected by prostate cancer a year beforehand and I chose that group – Metro Walnut, now LGBT Walnut – in order to be able to talk openly and frankly about my situation. They set up online meetings during the Covid pandemic which have continued, to maximise their geographical reach, and I take part in these each month.
This has been a real lifeline – a place where I can share my fears, emotions, thoughts and feelings, including ones that seem irrational or shameful, among people who understand and accept. There are others there with similar stories to mine and some in different, including worse, situations.
After the initial panic of being told I had “the big C”, which felt like a death sentence, my condition has turned out to be a long-lasting one, with which those close to me and I are living.
I see the aim for people living with PC as being to accept the fears, thoughts and feelings we have in reaction to the cancer and its treatment. The first step towards that aim is to allow ourselves to name those reactions. The group strives to be a safe, accepting place in which to do this, overcoming the negative self-judgement that can push us toward keeping them secret.
My Treatment
HIFU was not advisable for me, as my cancer was located near the edge of my prostate.
March 2016: Da Vinci robotic laparoscopic surgery at Medway Maritime Hospital.
Sept 2016 – Feb 2017: Bicalutamide to block testosterone, in preparation for:
February 2017: Salvage radiotherapy to the “prostate bed” – 20 treatments, Maidstone.
In 2020 my PSA became detectable again. I also retired to Suffolk.
April – June 2024: Androgen deprivation therapy (ADT) – stopped earlier than planned due to adverse effects.
August 2024: Radiotherapy to chest for PC in lymph node, Addenbrookes.
June 2025: Back on ADT following discovery of further spread to lymph nodes.
West Suffolk Prostate Cancer Support Group 