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Post Prostatectomy PSA at 0.2, need advice for 1st discussion w/ oncologist

EaNa profile image
EaNa
22 Replies

PSA has reached 0.2 after a RALP in 2020 so I'm being referred to a radiation oncologist for further treatment. Post operation biopsy determined positive margin at the mouth of the bladder which raised my staging to a T3. I've done some research but would appreciate some feedback from others in this group that have been through or understand these circumstances. My first consultation with the oncologist is in a few days. What should I be asking the RO in this first discussion? What can I expect the process to look like from this point forward? Thanks everyone in advance.

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EaNa profile image
EaNa
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22 Replies
Tall_Allen profile image
Tall_Allen

Recommend talking to a Radiation Oncologist first. Your recurrent PCa may still be curable. While your PSA is too low for a PET scan. If you have salvage radiation (SRT) before your PSA reaches 0.35, you may not need adjuvant ADT or whole pelvic SRT. Here are some questions to ask a radiation oncologist.

prostatecancer.news/2017/12...

EaNa profile image
EaNa in reply toTall_Allen

Thank you for the advice and the encouraging outlook.

Cyclingrealtor profile image
Cyclingrealtor in reply toTall_Allen

Check with the rad-onc on the psma pet. My Kaiser guy said psma at .2+. My last psa was .1 so I requested he run it again and it came back at .3. The psma scan picked up a deep right side obturator lymph node. Worth asking about.

Garyzw profile image
Garyzw

I had same issues first PSA after surgery was .11 then undetectable for next three times then was .3 checked in 3 mos was.1 then 3mos later undetectable, 6mos later .1 6 mos later another.1. I don’t know what to think except I have some prostate cells left that are not cancerous? They will not do anything until two concurrent readings of .2 or higher!

EaNa profile image
EaNa in reply toGaryzw

I was hoping my case would be more like yours to delay the inevitable RT as long as possible. My surgeon said there have been recent studies that indicate it may be better to delay salvage radiation until there is a definite increase in PSA, the threshold being 0.2. He gave me links to all the studies and then I came across this interview featured here in Male Care:

onclive.com/view/dr-ward-on...

Did your Urologist give you any explanation for the up and down readings?

Garyzw profile image
Garyzw in reply toEaNa

He said prostate cells not necessarily cancerous or eeror in lab

julianc profile image
julianc in reply toEaNa

It gets confusing as most papers I see suggest SRT as soon as possible, based on a recurrence. So if you get to 0.10 have SRT on the basis that you are almost certainly heading to 0.2. I think the key is to be certain of a rising trend with a calculable doubling time, then decide. I'm still holding out as I bounce around a lot but overall am up, last was 0.083.

EaNa profile image
EaNa in reply tojulianc

Maybe that bouncing around is no more than systemic measurement errors. My HMO will not report PSA to 3 digits for that reason. Sounds like you're still Ok below 0.1 though.

Alturia profile image
Alturia

I had persistent PSA after a RALP in January 2022. PSA was. 09. And I had some adverse features on the path report. I was staged at T3bN1M0. I started on Eligard in April 2022 and then started abiraterone and prednisone in June 2022. I am scheduled for 32 sessions of radiation in November. The radiation will be to the prostate bed and lymph nodes. The RO and MO are still saying this is curable so we will see. I used TA's list of questions when meeting with the RO. BTW, I am on my second RO. The first one only answered questions in a vague way and I found arrogant.

EaNa profile image
EaNa in reply toAlturia

Thanks for the reply. How's the ADT treating you? That's the part that I'm mostly concerned about. Any recommendations for minimizing side effects from those drugs?

Alturia profile image
Alturia in reply toEaNa

The ADT is not as bad as I expected. I have lots of hot flashes. I used to walk 3.5 to 4 miles a day before ADT. Now my limit is 1.25 to 1.5 miles at a time. So I just try to walk 2x a day. I tire quite easily so often take a 30 to 60 minute nap in the afternoon. I work out with weights 3x a week and that has reduced muscle loss. I have gynocomastia despite radiation to the breasts. But my PSA is undetectable so it is all worth it.

Break60 profile image
Break60

the fact it’s taken so long after RP to reach .2 is certainly a good sign. BUT SRT needs to be performed by an expert to avoid rectal damage. Even with an expert, incontinence down the road is highly probable.

EaNa profile image
EaNa in reply toBreak60

Yes, thanks for pointing that out. The main reason I went for RALP first is that I've had polyps and hemorrhoids in the past and was more concerned about rectal side effects than urinal incontinence, which I fortunately don't have. I will focus on that issue in my discussions with the RO.

Break60 profile image
Break60

I didn’t have incontinence until 8 years post RP. In the last year I’ve had a sling then AUS. Good luck!

EaNa profile image
EaNa in reply toBreak60

Not familiar with "AUS" ? All good information for what may be in the cards. Thanks.

Break60 profile image
Break60 in reply toEaNa

Artificial Urinary Sphincter . Just google it for information.

EaNa profile image
EaNa in reply toBreak60

Thanks.

Justfor_ profile image
Justfor_

Up to now, my Bicalutamide maneuvers bought me one year and counting.

healthunlocked.com/prostate...

EaNa profile image
EaNa in reply toJustfor_

Thanks, will research the med and check with the RO.

Justfor_ profile image
Justfor_ in reply toEaNa

RT without PSMA scan first is totally out of the question. Hence, the problem is that if my past doubling time is still valid (9.5 months) it will take me ~1.5 year past stopping Bicalutamide to reach 0.1 PSA which is the min value for a PET scan IMO. There is NO oncologist's recommendation behind this. Drug dose control loop is too an advanced topic for the typical MO.

Neathuh1 profile image
Neathuh1

My situation was similar to yours. I asked the RO how he knew where to radiate and he answered “we’re making our best guess”. I so wish that I would have waited until a scan showed exactly where the cancer was as it turns out it was in my lungs, not in the area where I received the 37 radiation treatments. Don’t let fear rush you into a hasty decision. God be with you.

EaNa profile image
EaNa in reply toNeathuh1

Thank you for the reply, you bring up a good point. I had been wondering about that myself and your case is a good example. If you don't mind a couple of questions, how did they find it was in your lungs and did the radiation have any effect on your PSA in the meantime (during and right after the radiation). I assume not since that probably tipped them off that they had to look elsewhere? I don't want to delay treatment but following your advice I would have to consider it carefully if the answer to the question of where it's at is the same as for you!

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