Hard decisions

User

Posted 07 May 2026 at 21:00

Hi Its been a while since I posted.

Diagnosed Jan 26 with pirads 3 plus 4 contained. 10mm tumour

My Psa was 5 ish . I had a meeting with a surgeon who said very low and offered AS RALP or radiation or SABR

I asked what would you do if it was your father? He replied AS. The week after I visited a radiotherapy doctor and went through those choices. I agreed to go on AS but asked or a psa test that day. She phoned me the next day to say that the psa had gone to 10, so a doubling in 3 months. However quite possibly down to my biopsy only 5 weeks before. I had a letter and the promised yearly mri on AS would now only be available if psa doubles in a year . (mine had but would probably settle)

I then jumped in headfirst and had my prosectomy on April 13th. All went ok np much pain catheter in for 14 days and very leaky now even lots of pelvic floors before and after. the leaks are getting me down and I doubted my choice massively.

I had the Histopathology report today. The tumour is now on both sides 35x17x25mm and has broken out of the prostate still 3 plus 4 now pt3a was T2c.

I am now sure I made the right decision ,I do not blame the doctors but jut shows how unpredictable this is.

User

Posted 07 May 2026 at 23:13

Mick, sounds like a very similar start to the journey I had, similar age, similar stats, I didn't do AS. Lots of improvements in monitoring since 2014. At least with the prostate gone it should have removed a potential source of further problems.

Thanks Chris

User

Posted 08 May 2026 at 01:59

Originally Posted by: Online Community Member

I am now sure I made the right decision ,I do not blame the doctors but jut shows how unpredictable this is.

Yes. PCA is unpredictable.

...and MRIs do not capture 100% of tumors.

...also...Biopsies only sample a tiny fraction of the overall tumor so it's always possible that cancer that is more aggressive than what is reportedly found may have been missed.

For these reasons combined with the fact that there are multiple safe treatment options for men at any age and any stage that I personally don't understand why doctors recommend AS.

There is plenty of data that shows the earlier cancer is treated the better the outcomes tend to be (in terms of cure rates). So, unless a patient is either in extremely poor health or absolutely adamant that they don't want to be treated, why tell a patient to sit, do nothing and just let the cancer grow?? That's just my opinion.

Anyway, congrats on getting through your RARP (I had mine in Aug 2024). Best of luck with your recovery.

-Mike

Edited by member 08 May 2026 at 02:14 | Reason: Not specified

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User

Posted 07 May 2026 at 23:13

Thanks Chris

User

Posted 08 May 2026 at 01:59

Originally Posted by: Online Community Member

I am now sure I made the right decision ,I do not blame the doctors but jut shows how unpredictable this is.

Yes. PCA is unpredictable.

...and MRIs do not capture 100% of tumors.

...also...Biopsies only sample a tiny fraction of the overall tumor so it's always possible that cancer that is more aggressive than what is reportedly found may have been missed.

For these reasons combined with the fact that there are multiple safe treatment options for men at any age and any stage that I personally don't understand why doctors recommend AS.

Anyway, congrats on getting through your RARP (I had mine in Aug 2024). Best of luck with your recovery.

-Mike

Edited by member 08 May 2026 at 02:14 | Reason: Not specified

User

Posted 08 May 2026 at 08:29

Originally Posted by: Online Community Member

So, unless a patient is either in extremely poor health or absolutely adamant that they don't want to be treated, why tell a patient to sit, do nothing and just let the cancer grow?? That's just my opinion.

Hello, Mike.

There are many reasons why active surveillance is recommended. The main one being that low grade prostate cancer for many men never becomes clinically significant. It avoids men being over treated.

This and and other reasons are explained in this link:

https://www.cancer.gov/news-events/cancer-currents-blog/2022/prostate-cancer-active-surveillance-increasing

Edited by member 08 May 2026 at 09:10 | Reason: Typo

User

Posted 11 May 2026 at 22:08

This isn't meant as a horror story but just a word of warning. I was put on AS with a Gleason 6 tumour January 2018. Consultant told me "this cancer will not kill you in the next 10-15 years" so went along with it. Things rolled on with just blood tests and nothing more was done until I asked for transfer to a hospital nearer to home purely for personal convenience. They immediately gave me another MRI and found a big lesion missed by the previous hospital. Another biopsy found an aggressive gleason 8 tumour. I was put on HT immediately followed by 20 sessions of EBRT. Six years later I'm still here. If I'd never asked for that transfer it's possible I'd be dead or on palliative care now. As it has turned out my tumours do not secrete PSA, I've never had an abnormal result in my life. So periodic blood tests on AS would never have identified anything abnormal. It's unusual I admit but just be aware it can be a game of chance.

User

Posted 11 May 2026 at 22:22

Hi mate Im glad it all turned out ok for you in the end . Its so unpredictable it seems . I feel that If I had gone on AS I would have ended up in trouble....

User

Posted 11 May 2026 at 22:47

Hi Mate

I get the AS but obviously you hear about the failiures not the succeses .

Im glad I made the decision its a bit of a Russian roulette tbh

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