What to do? Post RP, Gleason 9, Prostate ductal adenocarcinoma

Hi, my husband’s pathology report after RP in 2023 also revealed a more aggressive cancer than his biopsy indicated (Gleason 4+3 vs. 3+4), and that it was more like a Gleason 8 given seminal vesicle invasion, bladder neck invasion, 1/7 positive pelvic lymph nodes, and the presence of interductal carcinoma. The good news was that his PSA after surgery was undetectable and his PSMA did not indicate residual disease or evidence of metastases. It was recommended that my husband see a radiation oncologist, and he received adjuvant radiation therapy and ADT (Eligard for 2 years). In addition, my husband saw a medical oncologist, and Abiraterone was added because of a higher risk of recurrence. His ultrasensitive PSA's have remained undetectable during this period. He completed the hormone therapies in September, so we will see how the next PSA tests go as his testosterone levels increase. My husband also reached a point where it was, and still is, hard for him to read more about PC. He’s been on an emotional roller coaster ride. I just try to remind him there are treatments if PC recurs, and I try to help him focus on things he can control, such as diet and exercise. I think finding an oncologist he was comfortable with, and, as other posters on this board have emphasized, knowing your own situation and being your own advocate (or my husband’s advocate in our case) were key for us. I will also add that both my husband and I found therapists during this journey. I no longer see mine, but I look back and wonder what took me so long. Best of luck to you both.

@zash15 do you remember when in the process the abiraterone was added? Was it later after radiation? Thanks, Brett

@zash15
Being on both Eligard and Zytiga For two years can really keep your PSA down. Hopefully his stays down after his stopping treatment. Testosterone usually doesn’t rise to what it was before ADT was added, but it rises slowly and when it hits around 150 he should start feeling a lot better..

Your husband might benefit from going to an ancan.org Speaking freely meeting. They have them twice a month and people who have cancer can go there and discuss issues other than treatment. People talk about their feelings and how they are handling having cancer. Most of the people are prostate cancer survivors. They also have advanced prostate cancer meetings, weekly that discuss treatment, and what can be done. If his PSA starts rising, he can get some really great feedback from them, they have been helping people for 15 years with treatment options.

I’ve had prostate cancer for almost 16 years. It has come back four times including after surgery and radiation. I am stage four and castrate resistant, but if you met me, you wouldn’t have any idea there was something wrong. I have BRCA2, which prevents my body from fixing DNA error. That’s why it keeps coming back. I attend at least nine online meetings every month to keep up with the latest in what’s going on in prostate cancer treatment. Besides that I attend multiple online seminars.

The drugs available have kept me alive and well. He should realize there are multiple treatments he can have over the years that will keep him alive.

I know people with Gleeson nine that are still alive after 20 or 30 years after treatment. I know people that have been told they only have three or five years to live and are still alive double that amount of time. Prostate cancer is not a death sentence anymore, Most people die of something else.

Has your husband had genetic testing?

Get genetic testing to find out if genetics could be a factor. Does anybody else in your family have cancer? You can get it here for free, takes 2 to 3 weeks to get the results and a genetic counselor will call you. They will send you a kit that you return in the mail.

Prostatecancerpromise.org

Don’t check the box that you want to have your doctor involved or it will greatly delay the test.

The genetic problem I have can be treated by a specific drug when what I am taking now stops working.

A book I found very helpful is Dr. Patrick Walsh Guide to Surviving Prostate Cancer. Get the most recent edition. It’s loaded with good information for when you’re just starting on the journey.

Fear of the unknown was lessened considerably which I found somewhat comforting.

@sriddle1
I think I explained this, but I will mention it again.

My cancer was isolated to the prostate. There was no spread. I had it removed over 15 years ago.

Even though it was isolated, 12 years after my surgery cancer was found on the L4 in my spine. If it got any worse, I would lose the ability to walk. I had it zapped 2 years ago.

Because my cancer cannot fix errors in DNA, due to BRCA2 this happened. It could come back again, anywhere. It is in my bloodstream.

@sriddle1

Sorry for late reply - we are located in the Bay Area and we are receiving care at local UC hospital (SF). Those hospitals tend to be extremely busy but they offer really good care ONCE you push yourself into the system and I mean literary "push". Do not hesitate to call as many times as needed and ask questions without reservations. Unfortunately "squeaky wheel gets all of the attention" so squeak away ; ). Yes - try UCLA by all means.

@ucla2025 suggested a book - absolutely try to buy it ASAP and read as fast as you can.

Regarding PSA after RP - PSA after surgery is falling by half every 3 days and it should be undetectable after 6-7 weeks in your case. My husband had almost exact PSA as yours before surgery and by week 7 it was less than 0.014. You should insist on ultra sensitive test (one that checks PSA with 3 decimals after 0 due to having such aggressive cancer and the first PSA also has some prognostic value, even if undetectable (according to new studies).

I know exactly what you are talking about when you mention aloof attitude of your partner and as @ucla2025 stated, it is defensive mechanism - cancer looks less scary when one does not acknowledge it's "scariness". On the other hand, it puts tremendous pressure on a partner/wife since all decisions that are basically "life and death" decisions are placed in your hands and that is huge responsibility. Not to mention that one has to balance information sharing which needs to be dosed in small increments while situation requires 5 -alarm fire sirens and immediate actions. It would be like explaining that perhaps one needs to look into buying life-west and one is already half way under water and needs not only a west, but boat and food supply for 3 mos at sea. Anyhow - I was in this limbo since February and am still not even close to be out of it . I am not complaining, I love this man immeasurably and I do not care about sleep or no sleep, I am just trying to say that I understand you 100% and as you see, it is not unusual for a person to have hard time accepting and acknowledging such a scary diagnosis. At the same time, I am grateful that he is not effected by it since if I saw him crying or being sad I would just loose it, honestly. Seeing his smile and him being upbeat kept me sane all of these months < 3 . You can do it !!! Love conquers all ! 😉

@brettiquette Abiraterone was added after the radiation treatment. Radiation oncologist started him on Eligard with the radiation treatment about a month after. My husband asked about the aggressiveness of his cancer as the doctor had said it was more like a Gleason 8 than a 7 (4+3). He mentioned adding Abiraterone as a possibility and referred to a medical oncologist, so my husband started taking Abiraterone and prednisone about a month after the radiation treatment ended.

@jeffmarc Thank you for suggesting ancan.org. He has had genetic testing and was negative for BRCA. He does have a therapist who is a cancer survivor (not PC, but stage IV). At this point, it’s almost like a mantra, reminding ourselves his PC is undetectable, and there are more treatments if it comes back. Thank you for sharing your journey and best of luck to you!

@zash15 thanks for the reply, how is he tolerating it?