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

Discussion
Comment receiving replies
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


Replies to "I find myself in a similar position trying to figure out what to do and would..."

@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.

@pamperme Hey bud, I agree with the comments of @jeffmarc. Treatment for recurrence does seem inevitable due to the big jump in PSA over 6 months and other factors in your pathology.
Your history of pudendal nerve issues certainly gives cause for concern; as far as radiation exacerbating bowel issues, you really need to sit down with the RO and see what can be done. Unfortunately SRT is not very precise when compared to other forms of radiation (SBRT) but beams can be shaped to avoid delicate structures.
As for ADT, I would lobby for Orgovyx - an oral medication which for me and many others does not have the marked side effects of Lupron. I took it for 6 months, had minor symptoms and recovered very quickly from it.
Trust me when I tell you that all your anxiety and fears about ‘what ifs’ are worse than the treatment. And remember, an oral med can be stopped if necessary and radiation treatments can also be paused or stopped if symptoms are intolerable.
Long range side effects are variable and mostly unknown so we all roll the dice when it comes to making this decision…Best,
Phil