Factors impacting treatment decision making and decision regret. 🤔

Fantastic thread, thanks for starting Adrian.

Looking back at my diagnosis 18 months ago G9 with local spread lymph and bone, my treatment decisions were probably impacted by my delayed diagnosis in Primary care. At only 44 prostate cancer was absolutely not a differential for my newly qualified GP. Even with my Dad having had it. He decided against PSA and diagnosed an enlarged prostate. 7 months later after private diagnostics I got the unfortunate news. Inoperable and incurable but with treatment options to extend life 3-5 years. I’m not bitter as with the LUTs I had it already would have been advanced with spread but I think it subconsciously impacted my trust in the NHS.

I have received fantastic care since in the NHS but have advocated for my care. My NHS Onco was a trainee and offered radiotherapy as the first treatment. I declined having done plenty of research and asked for front loaded chemo and then RT. I’d seen the videos on the heterogeneity of the cancer clones and needing to whack it with lots of different treatments types to kill as much of it as possible. They agreed to it. I got a second opinion from the Royal Marsden on the RT to advocate for RT to zap all the met sites including the prostate. Only the prostate was offered initially by the NHS. They agreed to this as well.

With me having a good outcome to date with the above treatment decisions PSA down from 32 to <0.05, I’m naturally happy with the choices. The choice about hanging fire on adding in a 2nd gen hormone I just play around in my head from time to time. The jury’s out on that part of the decision process. Keeping something in reserve in case the Prostap fails is the thinking.

Doing loads of research from reputable sources is key, talking friends and family and the Oncology medical team as well. 

Edited by member 20 Jul 2025 at 15:59  | Reason: Not specified

I initially wanted it removed, but that was from a position of naivety. My diagnosis took a long time (~5 months) because various test results didn't agree. I knew early on I had prostate cancer (PSA 58), but getting the Gleason score and staging proved more difficult that usual, and hence what treatments were appropriate was not known for some time. Besides having lots of consultations during that time, it also gave me plenty of time to read around the topic. Being a developer/researcher anyway (albeit in a completely different field) I was already well used to reading research papers, so I turned my attention to reading research papers on prostate cancer, the treatments, and the side effects. My work colleagues told me afterwards I treated it like a new work project to be designed, and to some extent, that was probably my way of staying in control of it. I was in a fortunate position that I could stop working to spend more time on this.

The hospital had noted my preference was prostatectomy, and they mentioned that treatment each time I had a consultation, but they were warning me there would probably be no nerve sparing, and there was >50% chance of recurrence, so why not go directly to radiotherapy. I had already decided this, based on the no nerve sparing and >50% chance of recurrence. So after all the scans, I was passed to oncology.

I was lucky that my oncologist is a researcher too, and appreciative of someone who had read around the subject. We talked about trials, things like PSA level to aim for pre-radiotherapy, and others. I opted for a treatment he'd been doing for years (HDR Boost), which is a good combination of high dose into the known cancer, plus spillage over the area where micro-mets might be, but a relatively low side-effect profile considering. I opted to deliberately spill the radiotherapy wider to cover all my pelvic lymph nodes. He was happy for me to modify my treatment protocol, saying I knew enough about it to make those sorts of decisions, but I did very much ask for his advice too.

Looking back, I'm very pleased with my choice. I have subsequently learned more that reinforced my treatment decision. I put in some effort learning how to minimise or avoid side effects. Possibly partly due to that, and partly luck, I have come away with almost no side effects. A couple of years after the treatment, I said to my oncologist I almost wouldn't know anything had been done. I am now 6 years after treatment and 7 years after the initial PSA test which kicked all this off. If I hadn't done that charity PSA test, I would be metastatic by now and probably starting to get symptoms, so I do consider myself very lucky.