Living with Prostate Cancer: Meet others & introduce yourself

Hi, my name is Perry and I had a Radical Prostatectomy (RP) last week (8/4/22). I am sitting on my chair with a catheter and foley bag. Yuck. I just turned 60 and have been dealing with this since my Feb 22 PSA came back at 2.99. That flagged a Urology visit and a second PSA in March 22 that was at 3.46. This flagged a Trans Rectal Ultrasound that came out with a mass being detected. All the DREs I had were fine. This caused a Biopsy to be performed in May 22 which showed a Gleason 7 (4 +3) in 2 of 12 cores and a Gleason 6 (3+3) in two other cores. No perineural invasion etc. After this I had a bone scan, abdominal scan, and a prostate MRI. My urologist/surgeon wanted a PSMA PET Scan but my insurance would no approve it. Great...... Anyway, I had some incidental findings on the abdominal scan but nothing to worry about I was told. Bone scan clear. MRI on prostate showed an area of EPE. Anyhow, I decided the RP was best for me and had it last week. One night stay in hospital. Pain not too bad and came home next day. IMO 2 nights should be standard not one. Today I received my pathology report and I read it. My appointment with surgeon is in two weeks (busy man). No signs of seminal vesicle, bladder neck, or lymphovascualr invasion which is all good I assume. Also, the cancer was still graded a Gleason 7. Tumor is PT2. 15 lymph nodes removed and no tumors present. They were also listed as pN0 which is no signs of microcell cancer in them which I am very thankful for. The EPE detected on the biopsy had no signs of cancer in the margins which was good, but unfortunately the report stated in another area (left lateral) there was a 1 mm length of invasive carcinoma present at the margin. Not sure what this means but I think that means I have positive margin in one area. This has got me down as I was hoping I would not need any further treatment (radiation) and only would have to keep an eye on my PSA over whatever interval is prescribed by the doctor. Now, I am not so sure. Does anyone have thoughts on this margin issue? Thank-you, Perry Christopher. Also, there was no mention of Perineural Invasion on the pathology report.

My team has told me that once I went undetectable, I'd do every 3 mos for a year, then every 6 mos for two years and finally once a year. Of course, I was only undetectable for 3 mos so that all went out the window.

I asked my urologist at that time if he would order a test every 6 regardless and he said yes, if that makes you more comfortable, we can do that. I would say this is really up to you. Do whatever you and your husband are most comfortable with.

Can someone please tell us what the frequency of PSA testing is Post Prostectomy?
My husband had RP in 2020 and is fortunate to have undectable PSA for 2 years. He is in a very high risk catagory with T3b, ECE, etc. and some suggest 6 months testing intervals after 2 years. What is the MAYO protacol or anyone elses experience with this scenario? TYIA

Aug 9, 2022
I am Bryan and presently 74 and I was diagnosed with prostate cancer via biopsy in 2006, I do not remember what my Gleason score was. Without pulling any punches or naming the clinic, I will say that the doctor was crude, impersonal, and unprofessional. Thankful, my wife was with me and got exactly the same read and reaction to his presentation when giving us the good news - it's only prostate cancer!
I got another biopsy about two years ago (2020) and the doctor recommended that the time has come to do something about it. I agreed with him but have been dragging my feet since I had other unrelated problems develop.
Due to kidney failure and after being on PD dialysis for the past two years, I have decided to go forward with some type of treatment. I probably would have decided (I think) to let the prostate cancer run it coarse and I would hope to die of "old age" before the prostate cancer caused me serious difficulties.
However, PD dialysis has worn on me and I am thinking a kidney transplant is in my future. Again, however, I can not receive a transplant with a prostate cancer hanging over me.
The question now is the treatment. (Yup, back to that.) The treatments that my last hospital presented me with are the regular standards. My question is which treatment -over a extended time - is the best option or does this vary for individual to individual? Does anyone have experience with or knowledge of Proton radiation?
There are questions I have not asked because I don't know what to ask. I guess I can not hide anymore.
My original doctor gave me a finger wave and since he was Doctor Goldfinger (not kidding you, he told us that), suggested a biopsy. According to him, a biopsy is not a big deal, just take a few minutes. Don't we all have the same reaction to that surprise?!!!!
At that time in 2006, I had a low PSA, I had no trouble urinating (I still don't), no blood in urine, I was able to completely drain my bladder, and sex was not a problem. What has changed is: my PSA has started to elevate and sex has become an issue.
I need to contact UC Davis for my last biopsy results and Gleason score.
Something, I do know is that any treatment is archaic and brutal - it takes a lot of courage or fear or both to proceed with any of the treatments. My question is still - which one holds up the best over time?
Thank you for your feedback,
Bryan

Thank you so much. Your response was very helpful and very reassuring. I was diagnosed Gleason 7.
Best of luck to you.
Jim

The testosterone recovery time varies widely with the individual and the longer you are on ADT (Lupron) generally the longer the recovery time. I am 78, have a Gleason score of 10 and have been on ADT for most of the past 9 years. If I were ever able to get off ADT it is unlikely that my T or stamina will ever recover. But I keep pushing. If you were on ADT for a year or more it is likely that it would take many months to rebound and possibly never get back to where you were. But keep at it and don’t get discouraged. You could be one of the lucky ones.

PSA 2017 3.4
PSA 2019 7.2
PSA 2021 9.2
Biopsy 2021 3+3 Gleason Cancer 10/12 cores
Radical Robotic Proctectomy 14 Feb 2022 PSA <.01
Dealing with incontinence and Pudendal Nerve pain (This was main issue. Started in October 2019)
At first was leary of prostate surgery. Brother who was 61 (six years younger than me) had RRP (4 April 2019) died 2 weeks later (17 April 2019) blood clot-heart attack.

Thank you so much. That was very helpful. Jim

There are a lot of "factors" that go into one's return of testosterone. Age is one, length of time on ADT is another, pre-ADT testosterone may be another.

I can only provide my specific case. I was 61 when I started 18 months of ADT, last Lupron was May 18, so by July or August it was clearing my system. In October, T was 135, by Feb 19 it was above 400.

How much exercise should you do...whatever you want to. and whatever your health "allows" you to do. I have seen some hire personal trainers at their gyms to help guide them through developing an exercise program. i continued to exercise while on ADT albeit fatigued. After, I stayed with the same exercise, riding my bike, using the elliptical, swimming, playing basketball, skiing, waking, gardening, hiking in the mountains. The difference was with the return of my T, I was not so fatigued. That being said, an example of what I was able to do while on ADT was doing the Bataan Death March Memorial in White Sands, NM with my sister, a 26.2 mile hike through the desert. Not saying my time was great though, but I finished.

I am 77 years old. I completed 12 or 15 months, I can’t remember which, of Lupron treatments last December. I am still experiencing serious fatigue and muscle loss. I’m not sure how much to push myself to try to regain muscle strength and stamina.

I also had six weeks of radiation. My PSA now is well below one.

My main concern is getting my strength and stamina back. When will the testosterone levels return? And how much exercise should I do at this point?