Jon Holmes The C-Word

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User

Posted 12 Aug 2024 at 12:03

As someone who has recently been informed that the AS phase has ended and that I now need treatment I have found this podcast informative and entertaining. However, it puzzles me why all the discussion has been with people who have had surgery with nothing about the alternative of radiotherapy. Any ideas why that should be?

User

Posted 12 Aug 2024 at 19:50

Hi John,

There are lots of people on here who have been down the HT/RT route, although maybe not so many through choice. Andy62 is one of those who chose this route and it’s worth checking out his journey. It seems to me that the majority of people who are offered surgery go down that route especially younger men. Thereare pros and cons of both treatments which actually have similar outcomes for most people. The choice maybe comes down to side effects, which ones you are prepared to live with.

Hopefully now that you will no longer be on AS, they have caught it soon enough to give you the choice…I wish I had been given that choice but it was too late for surgery.

good luck with whatever you choose.

Derek

User

Posted 12 Aug 2024 at 20:33

In England, it's about 1/3 go for prostatectomy and 2/3 radiotherapy.

In Wales, its 1/4 for prostatectomy, and 3/4 radiotherapy.

User

Posted 12 Aug 2024 at 21:33

Originally Posted by: Online Community Member

In England, it's about 1/3 go for prostatectomy and 2/3 radiotherapy.

In Wales, its 1/4 for prostatectomy, and 3/4 radiotherapy.

that’s interesting Andy, do you mean chose prostatectomy over HT/RT? Or is that the number that actually have RARP rather then HT/RT.

All the guys I’ve met through Maggies, 100% all of them have chosen RARP over HT/RT given the choice..and those that weren’t offered surgery most if them wish they had been.

User

Posted 13 Aug 2024 at 16:16

We are listening to the podcasts too…excellent and worth a listen, it is biased towards prostate cancer and surgery, maybe that’s because that’s what Jon himself had?

User

Posted 13 Aug 2024 at 16:34

Hi John

Good you have choice as I did. I was your age (72) when I had prostatectomy over 12 years ago and I am lucky that my PSA has been <0.003 since surgery. That is the good news. Of course I knew the risks I was taking - both incontinence and erectile dysfunction. Although I had nerve sparing surgery, I was told by my consultant that because of my age I am unlikely to retain my erectile function to the same level as before surgery, which by the way was waining anyway. After three months following surgery I regained 99.9% continence and that is where I am at. I tend to leak when sexually excited or at orgasm. I were a small pad, more for peace of mind than serious leaks. My wife and I had both approached my treatment with confidence and were keen to re-establish our life if I survived for however long. We have been very lucky. I wish you luck.

I have written at length about our experience on this site which you can read at:

https://community.prostatecanceruk.org/posts/t28948-Re-establishing-Sex-Life

'Physics is like sex: sure, it may give some practical results, but that’s not why we do it.' Richard Feynman (1918-1988) Nobel Prize laureate

User

Posted 15 Aug 2024 at 11:33

Thanks to all for taking time to share your experiences with me.

User

Posted 15 Aug 2024 at 12:12

Originally Posted by: Online Community Member

that’s interesting Andy, do you mean chose prostatectomy over HT/RT? Or is that the number that actually have RARP rather then HT/RT.

These are the counts of people who have radical prostatectomy versus radical radiotherapy. There are other treatment options of course, but they are tiny in comparison.

Originally Posted by: Online Community Member

All the guys I’ve met through Maggies, 100% all of them have chosen RARP over HT/RT given the choice..and those that weren’t offered surgery most if them wish they had been.

It might be that only the urology department tells patients about the facility. That sort of discrepancy exists in sexual support for sure.

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