PSA increasing with negative PET scan... - Advanced Prostate...

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PSA increasing with negative PET scan post RP

Barrett1313 profile image
12 Replies

I am posting on behalf of my father who is 64 yo. He was diagnosed with PC at age 54 and had a RP. PSA dropped to undetectable and margins were negative so no radiation done. He has had routine PSA checks the past 8 years and all remained undetectable until this month. Came back at 0.3. Repeated about 2 weeks later and returned at 0.4. PET scan done this week was negative. Urologist thinks the cancer is just too small to pick up and is likely in the prostate bed. He feels confident it hasn't metastasized. Recommendation is to recheck PSA monthly for 3 months. If goes to 0.8 then repeat PET scan. If something shows up they can do Cyber Knife radiation to hopefully get rid of it. Other option is to just do diffuse radiation of prostate bed now which is less effective, more treatments (30-40 vs 5) and more side effects and would limit ability to do cyber knife in future possibly. Urologist doesn't recommend any other treatments like hormone blockers at this time. My father is very fit, takes care of himself, and feels great. His initial gleason score was 8. He is getting a 2nd opinion while waiting to repeat PSA as can't hurt. But wanted anyone's opinion or similar experiences to help decide best course of action. Thank you!

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Barrett1313
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12 Replies
Tall_Allen profile image
Tall_Allen

His urologist doesn't know the first thing about radiation oncology. Go see a radiation oncologist while he is still curable. The only thing he is right about is that it's too small to pick up on a PET scan. He has to treat what he can't see.

The cancer is growing quickly, so it is imperative that he act now. He will likely require whole pelvic salvage radiation and 6 months of hormone therapy, following the SPPORT protocol:

prostatecancer.news/2022/05...

PELHA profile image
PELHA in reply toTall_Allen

Agree. My husband’s PSA was rising similarly but clear scan. He was put on bicalutimide. However on scan a year later the bone Mets appeared so doublet started. Hit it sooner.

Optimistic49 profile image
Optimistic49 in reply toTall_Allen

Agree with TA and others who say to get started (and to get a strong oncology team). Most likely chance of cure via salvage radiation post surgery is to radiate when psa is low. There is clear data on this - see research links that TA has posted. Gleason 8 alone should have caused a sense of urgency re next step in my opinion.

allie2020 profile image
allie2020

Please listen carefully to Tall Allen. I had my RP six years ago and have always been undetectable on ultrasensitive PSA tests. But, I know there are no guarantees. With his PSA now at 0.4 and apparently rising rapidly, it is time to act. I strongly disagree with your Urologist's game plan. It's time to get your Dad to the very best radiation oncologist(s) you can find. If I have a recurrence and my PSA gets up to .06, I'm getting to work.

Boacan profile image
Boacan in reply toallie2020

I was undetectable for 4 years after RALP when PSA came back at .03 in April 2024. Retested in July & October both were .02 - You stated that at .06 you’ll start taking action. My urologist/oncologist recommends waiting until PSA is .20 before ordering PSMA scan to hopefully locate the cancer and begin salvage RT and ADT. I know we all have to choose if or when to take action, but just wondering how you arrived at .06 as your baseline?

allie2020 profile image
allie2020 in reply toBoacan

Well, God willing I will never get to .06. All of my uPSA results have been <.006 so far. I just think if I ever get to .06, I will start looking for the very best RO or probably RO's that I can find. Possibly even an MO who deals primarily with prostate cancer. My next PSA test is in a month or so and we always celebrate when undetectable. Interestingly, I saw my Urologist recently who did my RP. I said, 'it's rare to have a BCR after six years, isn't it?' He replied, 'pretty rare.' I guess I'm just saying, if my psa gets to .06, I will be concerned and talking with the best professionals I can find.

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

A word to the wise is sufficient.....Our regards to your dear Dad....

P.S. Please update his bio.... Thanks!!!

Good Luck, Good Health and Good Humor.

j-o-h-n

Geno2853 profile image
Geno2853

similar profile and experience, except I had radiation after my RP. I listened to Tall Allen and hightailed it to a radiation oncologist.

ron_bucher profile image
ron_bucher

See my profile for my experience achieving 7.5 years of undetectable PSA in a similar scenario. Your father's case is beyond the abilities of urologists. He should add to his team a radiation oncologist and a medical oncologist who has had a lot of advanced prostate cancer patients.

Tony666 profile image
Tony666

agree with all others - don’t wait. Many people say radiate when recurrence gets to 0.2 which your father has already passed

Hawk56 profile image
Hawk56

TA is offering sound advice. The imaging at .4 may have been too soon since statistically, it has a considerably lesser chance than say .5-1.0.

Others are not wrong either, the earlier you treat BCR, the "better" the potential to achieve the elusive "cure."

I would definitely agree bringing a radiation oncologist and oncologist to the medical team as you are likely outside the urologist's area of expertise.

Perhaps the question is, what does your dad envision for treatment by waiting for PSA to reach .8, then image? If it were MDT only directed to the identified sites of recurrence, maybe, but the various trials seem to indicate that SBRT alone is generally palliative or may serve to delay the onset of systemic therapy but not "curative."

If he (and his medical team) sees the potential for a cure then perhaps as TA says, act now, combine radiation to the prostate bed, pelvic lymph nodes and short-term systemic therapy. As an aside, when I had BCR in December 2015 after only 18 months from a very "successful" surgery, I asked my urologist and radiation oncologist about expanding the radiation treatment field to the whole pelvic lymph nodes and six months ADT. They said there wasn't long term data supporting it though clinical trials and data from Mayo indicated for high risk (GS 8, GG4, 18 months to BCR), there was likely micro-metastatic PCA outside the prostate bed in the PLN system. I acquiesced, they were wrong. I sometimes wonder if my journey would have been different had I stood my ground.

As to the side effects of SRT, I've had radiation treatment three different times, 69 individual treatments, no side effects, testimony to the advances in planning and delivery of radiation perhaps...or just dumb luck?

In my last encounter with treatment, we waited until PSA was between .5-1.0 as it greatly increased the statistical probability of locating the recurrence, it did. But, I am not at the stage your father is, BCR after eight years from surgery.

Kevin

Clinical History
dans_journey profile image
dans_journey

I was diagnosed at 52 with Gleason 3+3 and a PSA of 5.0 on 11 November 2010. (My primary care physician felt a palpable mass on my prostate during a DRE, and that's what kicked off this adventure.)

Guidance today would suggest that I go onto active surveillance but, at the time, I opted for a radical prostatectomy in January 2011.

My prostate came out cleanly: negative margins, no seminal vesicle involvement, no lymph node involvement, no extra capsular extension. But my Gleason was upgraded to 3+4.

My PSA remained undetectable to just shy of the magic five-year mark, when it became detectable at 0.05 ng /mL in September 2015. It took nearly six years to increase to 0.2 ng/mL, the historical definition of biochemical recurrence (BCR), in July 2021.

I really wanted to know where the cancer was before we started blindly zapping the prostate bed, so I went for a PSMA PET scan at UCLA on 30 November 2021 when my PSA was 0.22. The scan was inconclusive at that PSA level.

I talked with a radiation oncologist (RO) in February 2022 and felt it was important to start salvage radiation therapy (SRT) given the continued increases in my PSA. It was 0.33 in March 2022.

Unfortunately, an unrelated health concern popped up and needed to be investigated which delayed the start of SRT.

The RO and I agreed to radiate only the prostate bed and to do SRT with concurrent androgen deprivation therapy (ADT). On 1 May 2022, I received a six-month dose of Eligard, and we started 35 sessions (70 Gy) of SRT on 7 July 2022.

The Eligard and SRT drove my PSA down to a nadir of 0.11 ng/mL in May 2023, but by October 2023—14 months after ending SRT—my PSA had nearly doubled to 0.21. We did another PSA test about 6 weeks later in early December 2023 to confirm the October results, and my PSA shot up to 0.33.

In January 2024, my PSA was up to 0.37, and we did a second PSMA PET scan to see if we could locate what was going on and, once again, the scan was inconclusive at that PSA level.

I met with a medical oncologist (MO) in February 2024 and, given that I already had SRT, we agreed to monitor for a while.

In May 2024, my PSA was up to 0.52 and last week, it was up to 0.69. I meet with my team on 14 November to discuss what's next.

I suspect we may try one more PSMA PET scan to see if we can finally locate the cancer and then map out a plan from there if we can find it. If it's one or two lesions, we may be able to use radiation again.

During all of this, my MO said that she wouldn't start ADT until my PSA reached 2.0 ng/mL; my urologist said she wouldn't start it until metastases appeared. Now I have to sort through that conflicting guidance.

I share all of that for a few reasons:

1. SRT to the prostate bed alone versus whole pelvic radiation may not be the right approach.

2. SRT has a decent chance that it will not be curative, even in guys with decent numbers and predictors going into it.

3. Some might argue that me watching my PSA going up for 6 years without acting was a mistake. May it was; maybe it wasn't. For me, it was 6 years of pretty high quality of life without side effects from SRT.

Of course, each case is unique and your outcomes may be different.

I wish you and your father well.

Chart showing PSA status over time.

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