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Radical prostatectomy successful - now what?

Beast1952 profile image
24 Replies

6 weeks after surgery and my recovery has progressed relatively well. My first post-surgery blood test showed my PSA score to be 'undetectable'. My urinary control has been excellent, I'm walking as much as 10 miles at a time without any ill-effects, and I've recently also began incorporating some mild biking and certain weight activities that don't stress my surgical areas.

My urologist and my oncologist both are in agreement that I now need radiation in combination with Lupron hormone injections because it is 'very likely' that cancer cells still remain inside me due to the aggressive nature of the cancer that I had (Gleason - 9, PSA - 11.6)

While some advise me that with an undetectable PSA at present and generally-good surgical and recovery results, why not just monitor my status for a few more months and see if the PSA comes up at all before subjecting me to those treatments and their many documented possible side-effects? However, the doctors say to go with both the hormones and the radiation now, that because of the aggressiveness of my cancer it is inevitable that the PSA will rise and there will be new cancer growth. The theory is that now is the best time to attack any remaining cancer with the radiation before it can start to spread anywhere else, while the hormones would stop the testosterone generation within me, which is what new prostate cancer cells would feed on. The Lupron would involve two injections 3 months apart, and the radiation treatment would be 5 days a week for 8 weeks.

I started out leaning towards the 'wait and see' approach but am moving more towards the 'let's do it now' option.

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Beast1952
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24 Replies
dadzone43 profile image
dadzone43

I had G9. I received the same arguments from my MO & RO. I got the "standard of care" claims. I made the opposite decision. I am 15 months since RP with no detectable PSA.

It might well be a coin toss, but I did not buy the "just in case" reasoning from my expert and well-intended oncologists. If there is evidence that I have recurrence, of course I would treat. "Just in case" is not evidence nor is every G9 the same. Also I am 76 and in otherwise good health. I am making a quality of life calculation and -- for me -- it Trumps a quantity of life calculation.

Just offering you another point if view.

Beast1952 profile image
Beast1952 in reply to dadzone43

I appreciate the feedback, and yours was also my immediate feeling. I just don't know now. I'm 67, which may or may not be impacting my decision. Thanks again.

dadzone43 profile image
dadzone43 in reply to Beast1952

Not for nothing: in my last visit to my MO, he said that he had to admit that my decision looked like it was the right one. That was powerful and I was grateful for his recognition of the fallability of human judgment and reasoning. I am willing to accept and live with my decisions.

Magnus1964 profile image
Magnus1964

This is a difficult choice. Gleason 9 does not mean the same for everyone. I have a Gleason 9 score and have been around for 27 years.

I agree at the first sign of a PSA rise jump on the Lupron and radiation.

Tall_Allen profile image
Tall_Allen

The science agrees with your original assessment. In 3 randomized clinical trials, they found that there is no advantage to adjuvant radiation over waiting until PSA reaches 0.1 or 3 consecutive rises. You should be discussing this with a radiation oncologist and not an oncologist or a urologist. Here's the data:

pcnrv.blogspot.com/2019/09/...

Beast1952 profile image
Beast1952 in reply to Tall_Allen

Thanks. Appreciate your feedback. For clarification, my guy is a radiation oncologist - I just didn't realize there would be a significant distinction. Thanks again.

Tall_Allen profile image
Tall_Allen in reply to Beast1952

Then send him the RADICALS report and ask for his comment.

Beast1952 profile image
Beast1952 in reply to Tall_Allen

Please forgive my ignorance, but that report is . . .?

Beast1952 profile image
Beast1952 in reply to Tall_Allen

Oh, the link above. Sorry.

dadzone43 profile image
dadzone43 in reply to Beast1952

When your only took is a hammer everything looks like a nail. Surgeons cut. ROs buzz. MOs prescribe poisons. They all see you thru distorted lenses. Ya gotta use your own brain, too.

Beast1952 profile image
Beast1952 in reply to dadzone43

Yeah - tell me about it. Thanks.

in reply to dadzone43

Well put dadzone..

Boacan profile image
Boacan in reply to Tall_Allen

You’re right again Tall_Allen as my MO cited the same studies while recommending a wait and see approach following my RP and undetectable first PSA.

Beast1952 profile image
Beast1952 in reply to Boacan

The responses I've gotten all seem to be of the 'Why not wait and see?' type. As yet, no one has replied with 'I chose to do the treatments and I'm glad I did.' Ironically, all my no-prostate-issue friends all tend to go with the doctors and lean towards doing it now. Interesting, and yet maybe not surprising. Just adds to my indecision.

Tall_Allen profile image
Tall_Allen in reply to Beast1952

It's not a good idea to make decisions based on people you know. It's a cognitive error called "the availability heuristic." Remember that in those studies, each of those thousands of persons was a person someone knew.

in reply to Beast1952

Clinical observations apart, logic and reason should get into the mix before reaching to such a decision.

The fundamental question is whether anyone knows what caused the cancer in the first place. Possessing such kind of knowledge can lead to enhanced confidence that, after a complete eradication of the totality of existing cancerous cells, measures can be adopted, so that in the future cancer will not re-emerge out of the blue. In such a case hitting them with every means available, sure does make sense. Lacking the aforementioned knowledge nothing warrants that cancer will not come back again finding the patient in a more vulnerable position, having spent a considerable number of available lines of defense.

In sort, there are men that loosing all pocket cash on a poker table will bet their car vs others that will just walk away.

Boacan profile image
Boacan

I’m assuming that “successful” surgery indicates cancer was contained. My situation is similar but Gleason and Pre-op PSA were less aggressive at (3+4) and 6.01 respectively. However, my RP pathology showed some minimal Extraprostatic extension but was contained within the margins. First PSA at 7 weeks was undetectable. Interesting as both my urologist and MO recommended a wait and see approach and even referenced the studies provided in Tall_Allen’s response. They both stated that even if I had a higher Gleason, their recommendation would be the same.

Kauaiboy profile image
Kauaiboy in reply to Boacan

I’m 7 weeks post RP, Gleason 7, focal EPE, negative margins, no lymph nodes or METs, and a pre-RALP PSA of 6.8. Been advised to wait until I’m 12 weeks post-op for PSA test., which is fine. How often are you doing PSAs now?

Boacan profile image
Boacan in reply to Kauaiboy

Aloha kauaiboy! I lived in Hawaii back in the 70’s. Loved my time on Oahu and the Big Island.

Surgeon and MO want next PSA at 6 months post-op. I asked why not again at 3 months and MO cited studies posted by Tall_Allen.

Congratulations ! Live your life to the fullest . You could be done with APC ! 🥳

JR0912 profile image
JR0912

I would recommend a second opinion before you move ahead. I live in Oregon and my urologist was pushing me to get radiation once my PSA rose to .1 after RP. I made an appointment at the Seattle Cancer Care Alliance with a MO specializing in the prostate. He felt that I could wait until my PSA rose to .5 before having radiation.

I waited 1 1/2 years before my PSA rose to .35 and I felt I needed to start radiation treatments. I never had an undetectable PSA nor was I dry which was why I stayed away from radiation. I believed, and it was found to be true in my case, that after the radiation the incontinence was worse. My RP results found there was cancer outside the capsule but not outside the tissue removed by the surgeon. I was a Gleason 7 going into RP surgery and had some Gleason 8 in some areas after my prostate was evaluated by the pathologist.

Good luck with your decision. I do feel you have plenty of time.

Beast1952 profile image
Beast1952 in reply to JR0912

Thank you. Everyone's feedback is very valuable to me and greatly appreciated.

JPnSD profile image
JPnSD

I am 66 and was also Gleason 9 (Stage 4) and had a Robotic Radical Prostatectomy in August 2019. PSA 10 weeks after was .01 (aka undetectable)...I was elated. And then just after the first of the year...it was .05...and then 30 days later .04 (what?). My Oncologist and Uro say...wait and watch to determine when to start ADT and Radiation treatments...based on doubling rate. It scares the hell out of me that cancer cells are floating around in my system that could lodge anywhere. Waiting for my next PSA in April is difficult...and even tougher to wait to get the results. I wish us all courage in this marathon!

It infuriated me that Sam Waterson depicted someone going through a Radical Prostatetectomy for PCa on the Grace and Frankie TV series...and then was shown just holding a pillow to his abdomen on a couch in the next episode...and nothing more to worry about!!! How insensitive and stupid. They would never depict breast cancer and breast removal in such a cavalier way.

Beast1952 profile image
Beast1952 in reply to JPnSD

Thanks. I too am concerned about what still may be floating around inside me and where it could go. I wish I could be confident enough to just wait and see what happens.

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