New diagnosis

My husband has T3a with focal tiny EPE , gleason 9 after surgery , Cribriform and IDC. He has no inherited mutations. He had surgery about 6 weeks ago and we immediately panicked about findings but had hard time making app. with MO and RT at our hospital. Urologist suggested waiting for PSA that he ordered for November (?!) but we insisted having PSA checked next week and succeeded getting that order. We talked with RO just the other day finally and he suggested that we wait to see that first PSA and than go forward from there. He was not opposed to adjuvant but thinks that it is better to wait for complete continence and healing of that area. At this point we can do just one step at the time and PSA being the first step. If it comes positive, he will order PSMA also. If non detectable than we can have short term ADT and RT but will have to weight pros and cons regarding continence, toxicity etc. At this point incontinence is really minor , about 25 ml in 24 hours - that is really minimal ( it is equivalent to 5 teaspoons ) but it would be nice to have it gone before RT.
Wishing you all the best and I wish I have better answers for you, we are still scrambling and have very little direction and have to research and make decisions on our own. It would be nice to hear from somebody who has a better team and perhaps even has treatment at hospital with "tumor board" and got very good plan and explanation about what is the best approach 😔.

@mks1111
My experience with PC does not mirror yours and I think that is what you are asking for (feedback from others with same tests results).

You are going to get a lot of different opinions from posters. Just remember what is best for you may not be what is best for another. No one on MCC has your medical or mental health history so very limited in what you have and other things in your life or body that would be important with any decisions you make.

If you trust your medical doctors and have experience ones listen to them. Bring your questions and suggestions you read on MCC to them to discuss with medical experts. You will learn a lot on MCC like I did but I brought those questions and suggestions to my medical doctors who do have my full medical and mental health history.

If you have any doubt get second opinions. They can usually be done just submitting your medical records. I would suggest trying to use a major medical facility with known experience in PC.

I am not familar with RARP and BRAC2 so will not comment on that as have no direct experience. I don't see yo mentioning getting a Decipher test. That test more accurately defines your risk level versus just a Gleason score.

Thanks for the comments. Will definitely follow the advice. Will keep you posted

pT3aN0Mx
Post Aug 2022 RP - pathology confirmed Gleason 9 and identified nonfocal EPE
1st PSA 90 days post-op a disappointing.19 - called persistent PSA
Referred to Radiation Oncologist - pre-op PSMA PET did not identify definitive PCa in pelvic lymph nodes. Repeat PSA .18
Began 4 mos ADT Orgovyx in Feb and IMRT radiation in March - WPRT and pelvic lymph nodes (see SPORRT trial)
Completed radiation in May and ADT in June
1st post treatment PSA 6 mos after radiation ended in Nov
PSA has been undetectable at < .02 for 2 years
Patience is a virtue and needed. Wait for post-op PSA and if PSA detectable proceed with RO consult and Salvage Radiation Treatment.
Best wishes for a successful treatment.

Thanks for the positive feedback. Ironically, I’m a breast/bowel cancer surgeon myself. Seen it all—the good and the bad. Sure is different from the other side.

I am also BRCA2. As you can read from my history below, I’ve had four reoccurrences and because of the BRCA2 the cancer keeps coming back. I’m still around 15 years later, however. I’ve actually heard from a guy who is still alive after 25 years with BRCA2. I know other people that have had very serious cases because they are BRCA2 and it was found late.. In many cases, they did not live a lot of years. Since you are a 4+3 And have no metastasis you have a good chance of long-term survival.

In 2010 I was 62 and a biopsy showed Gleason 3+4. My father died of prostate cancer and he had radiation so I decided to have surgery. After surgery they told me it was a Gleason 4+3. It was only stage two. 3.5 Years later it came back, I had a Lupron shot 2 months before 7+ weeks of radiation. 2 1/2 years later it came back and I went on Lupron. I became castrate resistant 2.5 years later and added biclautamide. 1.25 years later went on Zytiga, which kept my PSA down for 2 1/2 years. After some AFIB Issues I switched over to Nubeqa. The last 22 months I’ve been undetectable. I became stage four about six years ago, had a metastasis on my spine zapped 2 years ago I did not find out I was BRCA2 Until five years ago. That’s why it keeps coming back.

At this point as long as Nubeqa Keeps my PSA undetectable I will stay on it and ADT. Once my PSA starts rising, I will get on a PARP inhibitor and it will hopefully keep my PSA down for a year or two.

Wow, rough course. Keep up the fight. I was actually Gleason 4+4 so fingers crossed.
It’s just tough knowing in the back of my mind what might be going on. Esp with what I do for a living.
Wondering what everyone does to cope esp in a stressful job (I also run an ICU every 4 weeks on top of my surgical practice).
Appreciate any insight

I ran a computer consulting business. I stayed with it for five years after I was diagnosed. When I hit 67 I just decided I had had enough and turned my business over to another company that I knew was competent. When somebody has their network go down or server problems it can be pretty stressful, but that never bothered me it was always a challenge.

Four days after surgery, I was out at a few clients offices. Only needed Acetaminophen to ease the discomfort of the surgery. The next day was a Friday And I took it easy, but after the weekend I went back to my normal schedule working almost an all day. The catheter was never really a problem, and none of my clients had any idea I had surgery. I could go into their private bathroom and empty my catheter bag Which was attached to my leg?

Since you are 58 you will probably recover quite quickly. I know a friend of ours was an OB/GYN and was consulting on surgeries 4 days after his Prostatectomy. He was in his early 70s at the time. Recovery is all over the place time wise, But it seems that younger you are the quicker it happens,

Hey Doc, know the feeling; ran a dental practice but luckily had a partner to pick up the slack while I recovered from RARP.
I NEVER stopped thinking about the cancer coming back (Gleason 4+3 unfavorable with PNI) but not in an obsessive way which interfered with my life or my enjoyment of it. You’re just hyper aware that you’re one blood test away from the next shitstorm.
I finally came to grips with it by embracing the idea that it was probably going to come back and I immersed myself on what would have to be done when that actually happened.
When BCR occurred I just said “OK, let’s go” and that was it. Having BRCA mutation does put you at a higher risk for recurrence but Jeff Marchi @jeffmarc is the man to talk to when it comes to this.
His experience is vast, his knowledge unsurpassed as he has the BRCA mutation himself. Best,
Phil

Thx Phil….you’re right. I’m just hyper vigilant right now. I’ve also dealt with the 30/40 yr olds directly who have cancer that I have not been able to fix and that comes into play here with my situation.
I’ll figure a way to deal with it. Thx for your insights.
This group has been great for support so far