Post prostatectomy. 1st PSA at .30, 2nd PSA at .43, future prognosis?

I am nearly 15 years post prostatectomy for Gleason 9 (4+5) with technically clear margins (pathologist saw tumor within 0.1 mm of capsule-bet he wouldn't call that "clear" if it were his prostate). My PSA was 0.4 at 4 months and nearly 0.8 at 8 months so a doubling time of 4 months (don't buy green bananas). I had radiation and ADT for 18 months and PSA went to .001 (really! I was in Honduras and they had an excellent lab if you believe those numbers). Gradually my PSA rose to ~3.0; I saw an oncologist in Charleston, SC who got me on a close to vegan diet, pomegranate supplement, Vit D (mine was borderline low) and my PSA stayed stable for a year or so and then started rising again. That oncologist got me into a study at NIH consisting of Smallpox vaccine combined with PSA (only good for those of us old enough to have gotten smallpox vaccine as a child) and then 6 or so booster shots with some "bird pox" vaccine plus immune boosters. Those had almost no side effects (sometimes I felt achy and tired for 24 hours after the shots) and controlled my cancer for 5 years without other treatment during which time my doubling time went as high as 30 months. That lost its effect after 5 years and I repeated the treatment in a follow up study and got little to no effect and developed multiple mets. I did taxotere chemo, and started on and have continued on Lupron and Nubeqa (daralutamide) and my PSA has been undetectable now for 2 years.
That is just my course with the oncologist at MUSC (Charleston, SC) and now at UC Health (Denver, CO). The only thing I would suggest would be close follow up with an oncologist and consider the study at NIH with Dr. Ravi Madan if the idiots in Washington have not quashed its funding.

Sorry to hear of your news. My first thought is that you fell into the same category as me: “surgical margins.” We are part of the unlucky 10-20% where the urologist/surgeon failed to remove all of the cancerous prostate…he left some tissue behind in his attempt to preserve the neurovascular bundles that are necessary for sexual function. With your first PSA being so high, I venture a guess that he left A LOT of prostate tissue behind.
Like all of us, “what’s done is done.” Your urologist can’t take you back to the operating suite to “try again” to get rid of all of the tissue.
What was your pre-surgical biopsy Gleason Score? I could be wrong, but you sound like at least a 4+4=8. And…did your surgical pathology report document things like Cribriform glands, seminal vesicle invasion (one or both), bladder neck invasion, and anything else? It sounds like you have an aggressive form of cancer for your PSA to have been so high post-op as well as on your second PSA. And…
It is odd that your doctor thinks it is too soon for radiation. Another doctor “down the street” might think completely differently. Maybe you should get a different opinion, and from a large university based hospital
My doctor spoke of radiation immediately upon getting my surgical pathology report. I had not even had my first PSA yet. Two months later it was thankfully < 0.1 ng/ml, so he backed off talking more about radiation for now. My next one is in another 30 days. Good luck to you, I look forward to your reply.

Hi @rlpostrp ,

Are you working now with urologist or RO and MO ? My husband is in high risk group with unifocal EPE and one tiny spot of inconclusive margin (it is actually far from nerves ) so I worry about the first PSA. His PSA is ordered for 12 week mark, but we will test it at 6 weeks in local walk-in lab. I do not trust doctors one bit at this point ...

Thanks in advance

Echoing Kujhawk's thoughts. I think it's SOP now for many docs to radiate outside the fossa bed to the pelvic field in the assumption that there may be micrometasis there.
You may also get a PSMA PET scan but even that can't detect all micrometasis. Also dud you get a Decipher test on some of the retained prostate material. They call it The Block. I recommend doing so. A lot of docs are doing that as SOP too.
Good luck!!

My husband has a rising PSA after surgery too. Not surprising because he had one positive margin and three positive nodes found in the lymph node dissection. He is now on Orgovyx and has another PSMA next week to see anything there is to see. Docs plan is doublet therapy + radiation. Wishing all the best for you going forward. The worrying can really take its toll on you. This support group has been very good for both of us!

I don't know. I had 3+4, 4+3, and 5+4 cells. The higher the number, the worse the cell. I was deemed high risk poor prognosis disease. I had extra-prostatic extension, perineural infusion, and detectible PSA after surgery. So thus far, it has always been negative news.
On the plus side, nothing in the lymph nodes they took out, seminal vesicles, or vasdefrens (however you spell it).
Despite all of this, there is a lot they can do.
Wishing both good health.

Thanks Gem for answering my question 🙂 and giving me all the details about your case.
I am wishing you great success and complete eradication of PC 🍀🍀🍀.
Yes, thankfully there are many treatments available and please keep us posted about your progress 👍🙂 if you find time.

All,

Thank you so much for sharing personal Prostate Cancer (PC) experiences and advise!

I am a general layman (retired Electric Lineman), these numerous acronyms can be over whelming, and I will not purchase green bananas!

The following is additional information about my in progress PC journey:

Gleason Score was 4 + 4 = 8, High Risk category

Pathology after prostatectomy along with surrounding lymph nodes removed were clean! No metastasis.

My Urologist is advising Androgen (hormone) Deprivation Therapy (ADT) followed by Salvage Radiation Therapy ( SRT).

I do have an appointment with an oncologist on 10-2 2025.

A Decipher Test is a work in progress at this time. Question, is a Decipher Test and a Genetics Test the same thing?

In summary, post prostatectomy with my prostate specific antigens (PSA) elevating I will travel the ADT/radiation roads soon.

Respectfully, we all have our individual/particular PC situations. I believe through the American Cancer Society, Mayo Clinic and other entities working to take on and learn how to treat PC information is shared and all of our Urologists, Oncologist, Radiologist etc. are doing their very best to advise and do what is best for each of our individual situations.

This email communication (support group) is wonderful as I truly appreciate the testimonials and advise!
Doing my best to stay positive! Wishing the best of health for all of us!

Mike

A decipher test will tell how likely you are to have a reoccurrence after treatment.

A hereditary, genetic test tells you whether or not you have genetic issues that could make your cancer worse. I have BRCA 2 for example and it really is a problem because my DNA cannot correct errors, as a result that causes my prostate cancer to never go away.

As I mentioned before with your PSA rising, you need ADT and salvage radiation. I had it after a prostatectomy and I’m still around after 15 years.

Jeff,

Thank you for clarifying the decipher and genetic tests!

It is wonderful that you are still around after 15 years! I appreciate testimonials!

ADT and SRT for myself soon!

Thanks again! Continued health for all of us!

Mike