I need advice to help make a decision.......

Posted by chipe @chipe, 21 hours ago

Just to set the background: RARP on September 16. Cancer was intraductal and they found at least 1 lymph node with PC in it. My 6 week PSA was undetectable.

Went to the radiation oncologist this morning. He gave me the choice to start ADT/Radiation (2 years ADT, 7 1/2 weeks of M-F radiation treatments) in January or wait until my PSA starts to go up. His data shows that either option is acceptable with outcomes the same. He also said there is a very slight chance I am cancer-free, but he really is not convinced and is leaning heavily toward PC lurking in me somewhere. He said it is 6 to one, half-dozen to the other.

My thoughts:
1. Both the surgeon and the oncologist are pretty sure that I am NOT cancer-free but right now the PSA is good. The oncologist said that could change with my 12-week blood test.
2. I am leaning heavily toward starting in January. Why wait for the PSA to go up? That means we are allowing the cancer to get large enough to impact PSA levels. To me, that is not acceptable. I don't want the cancer to get a foothold or grow at all.
3. I am a proactive person, not a reactive person. Having the ADT/Radiation therapy sooner rather than later is proactive, IMHO.
4. I am 71 now. As many of us here know, getting older takes its toll on our bodies. I am in good shape, very active, and not overweight. Today, I just cut down three trees, so I'm doing okay. Why would I wait a few years to start when my body is weaker due to the natural impact of aging? I know I can handle it now, but in five years, who knows?
5. He talked about the side effects: fatigue, loss of muscle mass, hot flashes. He said the radiation can also impact bowel movements and urinary frequency. Again, these are also, unfortunately, symptoms of the natural aging process (maybe not the hot flashes).
6. Is the ADT/Radiation regimen that bad that I should avoid it as long as I can?

Yes, I am leaning toward the "do it now" choice, but I want to make an informed decision. I have until mid-December to make the call.

So, if it were YOU, what direction might you take?

Thank you all!!! 🙂

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Maybe I shouldn't answer your question. I'm one of those people who if the doctor says we are doing this, then I am on board. In my opinion he has more knowledge then I do. In your case he left the decision up to you. I'm not sure how I could handle that. That would give me lots of anxiety. I'm on adt but haven't had to have the radiation treatment up to this point. Maybe I should of just let this one go. I wish you the best on your journey.

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Honestly, I agree with all of your points.
Why wait for possibly cancerous cells to get bigger? Zap 'em while you can.

I had a prostatectomy 7 weeks ago, with clear margins & no lymph node involvement.
The prospect of bowel & bladder incontinence is no fun, but if it was me, I'd nip it in the bud.

/2 cents

We'll wait for others who have actually had to make that choice.
Keep us updated either way. I'm sure it'll work out well for you.

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@stevecando54

Maybe I shouldn't answer your question. I'm one of those people who if the doctor says we are doing this, then I am on board. In my opinion he has more knowledge then I do. In your case he left the decision up to you. I'm not sure how I could handle that. That would give me lots of anxiety. I'm on adt but haven't had to have the radiation treatment up to this point. Maybe I should of just let this one go. I wish you the best on your journey.

Jump to this post

I tend to agree. They're experts because they spent years studying this stuff - we didn't.

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There's not a right answer, just a preference: you tell your onco team how you want to approach it, and then they help you figure out the details.

In my case, there was no @#$%@ way, I was going to sit down and let stage-4 cancer take over at age 56 (back in 2021), so I told them I wanted to fight, and then they told me they'd "throw the kitchen sink at it."

If I'd told them that I was already struggling because of the spinal injury and post-surgery complications (which I was), and didn't think I could face anything else (not true; I was ready to come out swinging), they would have helped me come up with a plan for that instead.

So the fact that *you* want to fight is your answer. The only remaining question is "how?"

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I agree with your proposal and that is what I would do. Waiting until the cancer comes back and is stronger is not a wise choice. Good luck

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I really don't have anything to add to the excellent comments already provided on this thread regarding the decision you need to make. However, I would suggest that being reasonably confident with whatever treatment path you choose will be important to your emotional well being as you go forward. Since you're not entirely sure which path is best for you (and I certainly don't know as well) I'd suggest getting a 2nd or even 3rd opinion (preferably from a recognized cancer center of excellence). It might give you an additional degree of confidence in whatever path you choose so you can be at peace with it and not have any regrets later. Best wishes to you and yours.

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The recent seminar I went to shows that intraductal is aggressive and usually means you have cribriform. Because of that doing something makes more sense.

I wish you had mentioned what your Gleason score is. And also a decipher score if you have one. The Gleason score tells you how aggressive it is. If it’s above seven then you are aggressive along with the intraductal aggressiveness is even a little higher. This disclosure about intraductal being so aggressive is sort of new news. I will be posting a link to the video of that meeting when it becomes available.

Yes, you could wait until your PSA hits .2 to do the salvage radiation. As they said the results are the same. With other issues, metastasis could appear while you’re waiting, but at .2 there won’t be a lot.

I’ve been on ADT for eight years. In my case, I don’t get the fatigue. I do get the hot flashes and brain fog and loss of muscle. Going to the gym three days a week now to try and rebuild my muscles. If you start weight training when you begin ADT, you may not lose too much muscle. I am 77 and not overweight, I keep a very tight lid on my weight. Some people gain weight with ADT, you don’t have to.

I would avoid ADT as long as you can. In my case, I had radiation3.5 years after surgery and was not put on ADT until my PSA started rising again 2 1/2 years later. They didn’t know I have BRCA2 15 years ago when I was diagnosed, just found out two years ago,. My PSA was 4+3 so not too aggressive, that didn’t stop PC from coming back four times.

Wish you luck.

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Sorry that you are hear, but glad you are thinking and asking questions, nicely done!

my take on your situation would be the following:

> PSA tests every six weeks for the foreseeable future
> Perform a genetics test before making a decision on next steps
> Lean into radiation with the mindset to seek and destroy the cancer in the lymph node(s)
> When PSA rises, perform a PSMA PET scan
> Using the scan results, re-apply radiation, assuming Oligometastatic cancer
> Begin ADT after PSA has risen and radiation is not seen a solution

The choice to begin ADT now (with radiation) is definitely an excellent standard of care and I see nothing wrong with it and support it, but ADT is no joke, it requires vigilance to manage the side effects. Some do it well, others not so much.

Please keep us posted and continue to recovery from your surgery, hopefully all is well!

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I had Salvage Radiation Treatment w/ short term ADT beginning 6 mos after RP.
Aug 2022 - RP at age 72
Excellent postop recovery.
Margins, lymph nodes and seminal vesicles clear.
However, pathology confirmed G 9 and found extraprostatic extension (EPE). Both are negative factors.
1st PSA test 90 days postop .19 (reconfirmed 30 days later .18)
Radiation Oncologist in December recommended 37 IMRT radiation txs 66.6 gy to whole prostate region (WPRT) and 25 of those sessions 45 gy included the pelvic lymph nodes.
Also recommended 4 mos STADT, I chose Orgovyx.
Began ADT in Feb and radiation in March.
Completed radiation in May and ADT in June.
6 mos after completion of radiation uPSA < .02, undetectable.
uPSA has continued undetectable 3 additional tests and actually waiting for results this week from 5th 90 day testing period.
TBC

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At age 71 your personality is not going to change - mine hasn’t. If your gut is telling you to treat now, then just do it.
The studies are correct: No statistical difference in treating now or 5 yrs from now. As long as you are monitored with 3 month PSA tests your cancer - if present - should not spread our of the prostate bed.
But can your personality handle .01 or .02 rises in PSA every 3 months? Or a sudden rise by .04 that then drops at the following test? That’s the real question IMHO.

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