What would you do if PSA stayed at 0.15 after prostatectomy?

Posted by tj1967 @tj1967, Aug 29 11:28am

Hi everyone,

I am 58 years old. I had a radical prostatectomy seven months ago and my PSA never dropped to undetectable levels. It has stayed at 0.15 for the past three months.

One doctor recommends a conservative approach with low dose radiation to the prostate bed only. Another recommends a more aggressive plan with radiation to the prostate bed, glands, and lymph nodes along with hormone therapy (relugolix for 6 to 18 months).

I am torn between avoiding side effects now versus hitting it hard to lower long term risk. Has anyone here faced this decision? How did you choose, and do you feel it was the right call?

Thanks for any insight. I would really appreciate hearing your experiences.

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Profile picture for mariopetrozza @mariopetrozza

Got a question for the group if anyone is or was in my situation...I had my Rp in 2021.one year later psa went up to .45 .doctors sent me in for 36 rounds of radiation..2 yrs later slight increase in psa so went for a biopsy in the pelvic upper area and the biopsywasn't secssfull couldn'tget it tough area upper pelvic area.psma showed a tiny dot less than a half centimeter so doctors said let's watch it and did psma scan twice 4 monthsapart.my psa slowly started to raise after 1 yr it went up to .40 so the doctor gave me orgovyx with 6 weeks my psa went undetectable. 5 months on orgovyx and the doctor did another psa test and still undetectable. Add psa undetectable Now they want to blast it with radiation 5 rounds starting this Friday. If anyone is in the same situation I'd like to know how it turned out and what your experience was...tyia

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I had an RP And 3 1/2 years later, my PSA started rising, so I had to salvage radiation. 2 1/2 years later, my PSA started rising so they put me on Lupron. Went on for 7 more years With more reoccurrences and more drugs.

Two years ago, the PSMA pet scan showed a metastasis on my spine. Had it zapped with three rounds of SBRT radiation. My PSA has pretty much stayed Undetectable for the last 22 months.

That is the way they handle this, Zapping the metastasis that do show up. It is usually very successful. Unfortunately, when you’re undetectable, there’s no way to do a pet scan to see if there are more metastasis. I’m sure they’re going after the one they last saw In the hope that it will resolve your issue. The only way to find out is to stop taking Orgovyx And see if your PSA rises.

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Profile picture for kayabbott @kayabbott

The PC oncologist recommends avoiding antioxidants such as CoQ10 and turmeric until after the radiation therapy, reason being one doesn't want to protect cells when you are nuking them. I take about 10 g/day of turmeric that has about 2 g/day of bioavailable curcumin (piperine [pepper] and lipids help absorption through intestinal walls). I take it to (hopefully) decrease my risk of multiple myeloma. There are a number of brands, none regulated by the FDA; I take Qunol 1 gm tablets. Do they help? My plasma kappa curve has flattened but don't know if there is any cause and effect, or just chance. I don't have side effects, but some people do. https://pmc.ncbi.nlm.nih.gov/articles/PMC8464730/ https://pmc.ncbi.nlm.nih.gov/articles/PMC6429287/ https://pmc.ncbi.nlm.nih.gov/articles/PMC2820199/#:~:text=Alone%20or%20in%20combination%20with,%2C%20treatment%20or%20co%2Dtreatment.

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We’re not doing the curcumin right now as we are preparing for salvage radiation.

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Profile picture for ucla2025 @ucla2025

We’re not doing the curcumin right now as we are preparing for salvage radiation.

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The fact that the docs specifically tell you not to take something while being treated suggests to me that the supplement is actually doing something!

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Profile picture for VancouverIslandHiker @vancouverislandhiker

TJ...thanks for the note. After surgery my PSA went down from 4.1 to about 0.08 . then started a very slow climb over 3 years to 0.14 , at which time I got 22 sessions of EBRT - external BM radiation therapy. No ADT as I asked the doctors about 6 to 7 times and he said no. During the 22 sessions of External being radiation, I didn't actually get my blood tested, but I am told that it bounces around like crazy. After the 22 sessions and after about two months, I had my first PSA test and that came down to 0.11 then 0.072 a month after that ( so three months now. ) . The PSA has a big lag time with EBRT . Sometimes she will not get peak kill off of cancerous cells for 6 to 8 months. This is what my doctor had told me. So immediately you will get lots of fluctuations followed up by which should be a steady decline in your PSA. Keep me in the loop of how you're doing. Very interested.

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Thank you. Everyone has been really kind with their advice. I’m waiting on my PET scan, MRI, and next PSA results before deciding how to move forward. Some days I lean toward taking an aggressive approach that includes ADT, and other days I feel strongly about avoiding ADT altogether and trying radiation only. Being relatively young, I can’t help but wrestle with how either choice could impact my future battle with prostate cancer or my quality of life. I appreciate hearing your story about lowering your PSA with radiation alone. That gives me hope, and I’ll keep you posted as things progress.

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Profile picture for jeff Marchi @jeffmarc

I had an RP And 3 1/2 years later, my PSA started rising, so I had to salvage radiation. 2 1/2 years later, my PSA started rising so they put me on Lupron. Went on for 7 more years With more reoccurrences and more drugs.

Two years ago, the PSMA pet scan showed a metastasis on my spine. Had it zapped with three rounds of SBRT radiation. My PSA has pretty much stayed Undetectable for the last 22 months.

That is the way they handle this, Zapping the metastasis that do show up. It is usually very successful. Unfortunately, when you’re undetectable, there’s no way to do a pet scan to see if there are more metastasis. I’m sure they’re going after the one they last saw In the hope that it will resolve your issue. The only way to find out is to stop taking Orgovyx And see if your PSA rises.

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Thanks Jeff i belive I'm making the right decision not to wait and see.we waited several months in the beginning after the first psma.and thankfully my doubling time was 6,7 months. So now I started sbrt and fingers crossed and with the grace of God we get to remission...ty

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Profile picture for jeff Marchi @jeffmarc

After a prostatectomy, your PSA should drop to undetectable. If it doesn’t, then there is prostate cancer somewhere in your system. The most likely location is where the second doctor has recommended you have radiation.

Getting on ADT for six months can stop your cancer from growing and can reduce the size so that radiation works better.

I’ve faced those decisions and know many people that have. I had a prostatectomy and 3 1/2 years later it came back (my PSA hit .2) And I had salvage radiation. That gave me 2 1/2 years before it came back another time. At that point I went on ADT and I’ve been on it for nine years since. Nobody knows I have prostate cancer unless I tell them. I do get hot flashes, but that is the only obvious thing that people see. After 15 years of prostate cancer, I leave a pretty normal life do a lot of exercising every single day. I do have the BRCA2 genetic issue, which is why my cancer keeps coming back. Getting prostate cancer so young can be caused by genetic problems.

Getting an hereditary, genetic test is a good idea. If you have certain genetic issues, there are new drugs to treat them. You can get one free here, If you live in the USA.

Prostatecancerpromise.org

They will send you a kit and in about three weeks a genetic counselor will call you to discuss the results. Don’t check the box to have your doctor involved. In that case they won’t send anything until they speak to your doctor.

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@jeffmarc Thanks Jeff for this answer, started the genetic testing process today thanks to you

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I find myself in a similar position trying to figure out what to do and would have been totally blind sided and not understanding what my onocologist if it was not for Mayo Connect and info from all the good people sharing information. I went two years at >.02 then had .02 to .05. At three years my PSA went to .15. I was set up for an oncologist and the urologist set me up for a Psma test which I was surprised at from reading it is unlikely to pick up anything at that value. The oncologist I visited on Friday and recommended 7.5 weeks radiation of the bed and the lymph nodes. I had Gleason 7 3,4 cibform, EPE, several indeterminable margins, stage 3a. A decipher test has been ordered. The use of ADT was also discussed based on the decipher test. I believe in eradicating the cancer but I have nerve/pain issues in the pelvic area which started before surgery and after surgery had sitting pain and the penal pain continues. I believe the brain has intensified all senses in this area including the sphincter muscles and it bowl movements hurt and I have incontinence issues. I have learned to accept the pain.
I worry about the radiation making my fecal incontinence worse and causing more pain there and in my pelvic area but I feel I will have to deal with it.
I got a PSA test Friday and it was.13 (1 month) and another scheduled 1 month from now. The question I have is there definitely cancer occurring again at this low value? From what I am reading it can only be produced by cancer since the prostate is gone.
I am looking for any comments and appreciate your question Jeff and the responses since .15 value is similar except your value never went to non detectable and mind did. I do not understand what this difference may mean, except mine may be growing back
Wishing you and everybody the best and I want to thank this sight for educating me.

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Profile picture for tj1967 @tj1967

Thank you. Everyone has been really kind with their advice. I’m waiting on my PET scan, MRI, and next PSA results before deciding how to move forward. Some days I lean toward taking an aggressive approach that includes ADT, and other days I feel strongly about avoiding ADT altogether and trying radiation only. Being relatively young, I can’t help but wrestle with how either choice could impact my future battle with prostate cancer or my quality of life. I appreciate hearing your story about lowering your PSA with radiation alone. That gives me hope, and I’ll keep you posted as things progress.

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@tj1967 In brief, I know why they use ADT (in my case LUPRON) to arrest the testosterone levels, but I keep having the old adage "The treatment is worse than the disease" going off in my head. Chemical castration is not something our bodies rebound from very well at all, at least for me. rlm

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Profile picture for madpuppy74 @madpuppy74

@tj1967 In brief, I know why they use ADT (in my case LUPRON) to arrest the testosterone levels, but I keep having the old adage "The treatment is worse than the disease" going off in my head. Chemical castration is not something our bodies rebound from very well at all, at least for me. rlm

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@madpuppy74

I understand your anguish, but treatment is "worse" at the moment since you can not feel nor see your cancer. You are doing treatment so you do not have to face PC's full force which is I trust by hearing stories extremely painful and of course deadly. So, no, treatment is not worse than cancer itself, it just seems that way at this stage.

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Profile picture for pamperme @pamperme

I find myself in a similar position trying to figure out what to do and would have been totally blind sided and not understanding what my onocologist if it was not for Mayo Connect and info from all the good people sharing information. I went two years at >.02 then had .02 to .05. At three years my PSA went to .15. I was set up for an oncologist and the urologist set me up for a Psma test which I was surprised at from reading it is unlikely to pick up anything at that value. The oncologist I visited on Friday and recommended 7.5 weeks radiation of the bed and the lymph nodes. I had Gleason 7 3,4 cibform, EPE, several indeterminable margins, stage 3a. A decipher test has been ordered. The use of ADT was also discussed based on the decipher test. I believe in eradicating the cancer but I have nerve/pain issues in the pelvic area which started before surgery and after surgery had sitting pain and the penal pain continues. I believe the brain has intensified all senses in this area including the sphincter muscles and it bowl movements hurt and I have incontinence issues. I have learned to accept the pain.
I worry about the radiation making my fecal incontinence worse and causing more pain there and in my pelvic area but I feel I will have to deal with it.
I got a PSA test Friday and it was.13 (1 month) and another scheduled 1 month from now. The question I have is there definitely cancer occurring again at this low value? From what I am reading it can only be produced by cancer since the prostate is gone.
I am looking for any comments and appreciate your question Jeff and the responses since .15 value is similar except your value never went to non detectable and mind did. I do not understand what this difference may mean, except mine may be growing back
Wishing you and everybody the best and I want to thank this sight for educating me.

Jump to this post

@pamperme
Actually, after the prostatectomy, my PSA went to undetectable for 3 1/2 years. Then it started rising and at .2 I had 7 1/2 weeks of salvage radiation. That gave me 2 1/2 more years before it started rising again. I have BRCA2, which is why it keeps coming back.

It will be very useful to see your decipher test results, but with you having these items, cribriform, EPE, several indeterminable margins, stage 3a, it is very likely you are going to have a reoccurrence.

Yes, that PSMA pet was unlikely to show anything, but huge metastasis, since your PSA was so low.

While salvage radiation can cause issues I had none at all. The issues it causes are usually temporary. The question is what is causing the pain you’re having. That is very unusual for somebody that has had a prostatectomy. I suspect they did the PSMA pet to see if there was cancer in that area, causing the pain. Have you discussed these pain issues with your urologist? I would definitely want to find out why it was happening.

You had a PSA of .15 and then it went down to .13. You can wait until .2 before getting the radiation, But did you have the test done at the same place? You can get different results from different labs. Definitely want to hear what the next PSA test shows. Going from .05 to .15 in two or three years is a very slow rate of doubling.

Usually they give you ADT a couple of months before your Radiation,. I got a 6 month shot two months before my radiation, and to tell you the truth, I had no idea what it would do and I never had any side effects from it that I remember (it was in 2014). I did start on Lupron in 2017 and have been on it or Orgovyx (ADT) Since then. I had really major hot flashes when I went on Lupron in 2017 so I should remember side effects from 2014, but I don’t.

Yes, having any PSA at all is due to something growing somewhere. The question is, How fast is it growing. You should continue to get monthly PSA test tests for a while. I’ve been getting them for over eight years.

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