Gleason 9/10 localized - what treatme... - Advanced Prostate...

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Gleason 9/10 localized - what treatment did you choose?

EvFC profile image
EvFC
6 Replies

For those with localized Gleason 9 or 10 prostate cancer, what treatment option did you choose and why? How long ago was your initial treatment and have you required any additional treatments since then? My husband is pretty close to making his decision and it’s a tough one. Just waiting on a couple more pieces of the puzzle.

Thank you!

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EvFC profile image
EvFC
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6 Replies
TylexGP profile image
TylexGP

Hi EvFC,

Please see my Bio. I was G9 T3bN1. I started ADT plus Abi and Pred. Followed by HDR Brachytherapy a month later and a month after that 25 EBRT treatments . Continued ADT plus Abi and Pred for two years. I am a year out from stopping ADT and currently labs stable with PSA 0.05. Please feel free to PM me if you have questions.

Justfor_ profile image
Justfor_

In another thread of yours I advised you to select the most experienced practitioner/institution. This is what I followed in my personal case. I wanted the best performing institution up to 3-4 hour flight time from my home. It was ok with me to pay out of pocket. What wasn't ok, was that many top tier institutions charge Russian oligarch prices to their prospective "International patient" clientele. My RP, including travel expenses for me and my wife, totaled to ~ 28k Euros ( ~41k Can $) when the top of the line proton RT would had been ~ 100k Can $. Answers to your remaining queries can be found in my bio.

Scout4answers profile image
Scout4answers

See my profile for a similar DX to yours. PSA has been undetectable for a long time.

Jancapper profile image
Jancapper

GS 9, localized. HDBT + 25 IMRT sessions + 2 years ADT

MarkS profile image
MarkS

G9, T2c/T3a, possibility of lymph node involvement. 37 sessions of EBRT and ADT, with 2 sessions to go! I posted my reasons for RT over RP on the Prostate Cancer Network board:

"My decision on Radiotherapy -v- Prostatectomy

I hope this story might be useful to others. I'm based in the UK and had a PSA of 12.7 from a test in June 2023. That led to an MRI in August with a PI-RADS of 5 with irregularity on the front of the prostate. I eventually had a biopsy at the end of September after 3 cancellations (this was through the NHS). I finally received the results 5 weeks later - Gleason 9 (4+5) and was told by the consultant (or at least was given a book with the title "Understanding locally advanced prostate cancer" plus a card for the specialist nurse) in a 10 min consultation. This was a huge shock. I had an ordinary CT scan and NM bone scan. I saw another consultant privately and he was able to give me the results which were that there was actually no spread identified, which was cause for celebration.

I then needed to make a decision on radical prostatectomy or radical radiotherapy. Officially, both were treated equally. My initial thoughts had been on RP rather than RT. However, after investigating the options in more detail, I decided on the radiotherapy. My reasons are:

- fewer side effects with RT such as urinary incontinence.

- the treatment could start straight away back in November whereas the surgery would not happen until early Jan (i.e. around now) at the earliest. Even then with the 6 day junior doctors' strike and critical incidents declared, it would almost certainly have been postponed due to lack of beds, and that includes going privately. That would have been a time of great uncertainty and anxiety. With prostate capsule irregularity and high risk cancer, time was of the essence before mets appeared.

- I was concerned that the urologist was very gung-ho about spread. He said that as no spread had showed up on the ordinary CT scan and bone scan so there was no need to do anything about the lymph nodes.

- I went to a lunch and sat between two guys who it turned out had both had PC but were 3 years ahead of me. We spent the whole lunch discussing PC! Both had had RT. One without a spacer on the NHS and one with a spacer privately. The former developed further problems and now has a colonoscopy bag. The latter is clear. I could relate to his experience.

- I had been referred to a very nice oncologist for a discussion, We spent an hour discussing the various options and what the RT would involve. This gave me great confidence in her professional ability.

Consequently I decided on RT. The oncologist arranged a PSMA PET CT scan (hurrah!) in days and I then started on bicalutamide within an hour of the scan. The relief was immense! Two weeks later I had my first 3 monthly prostap (leuprorelin acetate) injection. That will carry on for up to 3 years. The radiotherapy starts at the beginning of March for 7 weeks. I will have the spacer fitted in February. My PET scan has shown no spread, but the oncologist says there is still the risk of microscopic spread to the lymph nodes and has calculated that there is a MKSCC risk of lymph node involvement of 69%, risk of SV invasion 71% and Roach risk of nodal involvement 28.5%. The PC is T2c/T3aN0M0.

Fortunately there is an excellent new private cancer centre 5 minutes away with the latest RT equipment where I will be treated. Otherwise the NHS hospital was 30 mins away on a good day, 90 mins on a bad day with poor parking.

Subsequently, a friend of a friend, who had seen the same urologist and had a prostatectomy 3 years ago and been given the all clear, had a sudden rise in his PSA and has been found to have spread to his ilium (hip bone), which was shattering for him.

So far, the side effects of the hormone treatment have been fairly mild, long may it continue 🤞.

I hope this is of use to others. Anyone with a specific query in the south of England can PM me. This is a great site."

I have been very happy with my decision. I have since heard of more cases of men who had RP subsequently getting recurrence of PC and having to go for salvage RT. To me it seems that RP has changed little over the years whereas RT has developed by leaps and bounds.

The best of luck with your decision.

Mark

j-o-h-n profile image
j-o-h-n

Not knowing much about Pca back in 2002 (and less now), I was driven by the GROTMFMSASAP method. Get rid of that mother fxxxing mother ship as soon as possible. So I opted for the old RP (robotic was exotic in those days), back when I was 66, now I'm 87.

Good Luck, Good Health and Good Humor.

j-o-h-n

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