Hello & welcome to the club

TurtBean

Hi all - I’ve been lurking here for a few days, finally joined yesterday, and I just wanted to say hello and give some details.

Let’s see…presented with >4.0 PSA in 2021, had first biopsy and MRI then, done locally. Everything came back good and it just looked like enlarged prostate.

Monitoring every several (then every few) months, PSA kept inching upwards, various other tests and checks, second biopsy done locally in 2023, and also referred to The James Cancer Center (Columbus, Ohio) for biopsy…everything came back clean, more monitoring.

Finally, 2025, PSA was up to 9.x, MRI and biopsy both done at The James, and this time, both showed signs of cancer - Gleason was 3+4, grade group 2, but considered stage 3 because it had just started escaping the gland.

Treatment paths offered were RALP, with additional removal of some lymph nodes, nerves on my left side, and some of the fatty tissue around my prostate, or hormone & radiation therapy, which would have taken 3-1/2 years for the program my care team suggested.

I opted for surgery. After seeing the pros and cons for each, it was actually one of the quickest decisions I’ve ever made…literally 30 seconds after reviewing both, I said, “Sounds like surgery is the way to go for me.”

Surgery happened Jan 7, just 5 weeks ago. I was under for right at 5 hours, the doc said my nerves were very curly, not straight, making it a delicate process to remove.

Immediately after surgery, I experienced Afib for the first time ever, and I also had some thyroid things going on. The thyroid seems to have cleared up on its own, and I’m currently wearing a 30-day heart monitor to see if my Afib was temporary due to surgery & thyroid, or if it’s more serious.

Spent the night, released late the following day, catheter out 8 days later, and now, I’m just working through the incontinence and ED.

Incontinence…I’m still without any bladder control whatsoever, doing my kegels every day, and I’m scheduled for pelvic floor therapy starting next month. Hopefully I’ll see some progress by the time that winds up at the end of April.

ED - I just started the daily low-dose generic Viagra and just started using a vacuum pump. No real rush to try sex again until the incontinence is in a better place.

My first post-surgery PSA follow-up is scheduled for April 7.

Family history - dad and one brother have BHP. Oldest brother, oddly, was very swiftly diagnosed with PCa right when I was going through mine. His came out of nowhere, and he’s in a watchful waiting scenario. He’s 69.

I also had a first cousin pass two years ago from PCa, almost exactly 10 years after he was diagnosed. He was 69. Due to my family history, I’m getting genetic testing shortly as well.

Other than that, I’m 59, married almost 36 years, no kids, hoping to retire next year, hoping to move next year. Good to meet you all. I like to cook, eat, drink, play music, and travel.

Turt

capecodder

https://csn.cancer.org/discussion/329984/hello-welcome-to-the-club

@TurtBean thanks for the background and for sharing your experience. Helps those of us just behind you in the process.

VascodaGama

Turt

Welcome to the board.

Overall, I think you are doing well, particularly in regards to the hereditary possibilities as you describe above. And yes, let the blood fill those cavernous areas to avoid atrophy. In my times in 2000, apart from the pump, the sex-doc in the team of the surgeon also recommended me masturbation to get the nerves back into function.

I wonder why have they scheduled the first PSA test to such a late date. Typically that is done ten days after op, to serve as a comparison value to the second draw, two or three months later. Nadir should be something lower than 0.05 ng/ml.

I recommend you to include a testosterone test in your next draw, which will be helpful in evaluating issues in the future.

Best wishes and luck in this journey.

VG

Old Salt

I hate to disagree with my internet friend Vasco, but it's my understanding that doing a PSA soon after surgery can lead to unjustified anxiety.

Wheel

My Surgeon said they wait 6 weeks for the PSA test in higher risk patients because it takes time for the PSA level to actually clear out and your body has alot of inflammation from the surgery. A good guideline is 60 days he said for several reasons, one being anxiety that the patient would have while he is healing from surgery believing the surgery might have been unsuccessful while it was successful. Second, no additional salvage ADT treatment would likely occur before 60 days after surgery due to recovery. He said unless the patient is high risk he waits 90 days. He said the additional time after surgery is really going to make no difference in the future treatment outcome but cause stress on the patient when he initially does not need it. That being said I would follow your Surgeon’s advice on what he does and if he said it’s needed well then it’s needed now and if he says wait 6 to 8 weeks or 90 days I would not push him to order it sooner.

Wheel

my numbers 90 should have matched my earlier when he referred said 60 days as his

VascodaGama

Yes, you are all correct. The PSA that counts to verify success is the one taken two/three months after surgery.

The initial ten to fifteen days PSA is a surgeon threshold. It varies from 0.03 to 0.10 ng/ml. My surgeon's was 0.06 for a pT3apN0M0 my case. Unfortunately mine was 0.12 and at two months became 0.18 indicating growth and failure of RP.

You are all wonderful survivors that, for years, I am proud in having as friends.

Josephg

I am thrilled to see you on the Board again, my Friend and PCa Soulmate, Vasco. Your knowledge and advice are invaluable to members of this Board.

Yes, my PSA was 0.05 shortly after surgery, and my Surgeon advised me at the time that he believed that my surgery failed to capture all of the Bandit, and there were probably some PCa cells alive outside of my prostate gland in the Prostate bed area. He was correct. A year after surgery, my PSA had climbed to 0.11, and the Surgeon referred my to a Medical Oncologist (and a cross-referral to a Radiation Oncologist) for follow-up radiation/ADT treatment.