Living with Prostate Cancer: Meet others & introduce yourself

Age 67. Diagnosed in July 2024 with Gleason 9. Surgery in November discovered some spread to the left bladder neck. First blood work was end of February and was undetectable. Next blood work due in 3 weeks with doctor appointment a week later. Incontinence was difficult the first 5 months, but physical therapy and Gemtesa led to improvement. The biggest issue for that now is with exertion, like lifting something heavy or playing golf.

I was 75 years old when I was diagnosed with PC, Gleason4+4, aggressive.
After meeting with different surgeon oncologists and radiation oncologists, I decided that the removal of my prostate was not an option, too risky. The side effects, incontinence, and impotency , to big. Friends whom went through the surgery, warned me no to do it. A physician friend of mine suggested that I should to talk to radiologist oncologist, I did I went to talk to a doctor at California Proton, and I liked what I heard and decided to go with 25 rounds of Proton therapy and six months of Lupron. I did not like the side effects of the hormone therapy, but my oncologist suggested that I should be only for six months. I went along and today my BPA is.0.03. It seems to me that the treatment was successful. I did not have incontinence , but I have not recover from ED 🤞. My libido is fine , but I have not been able to have a strong erction. My oncologist said that, sometimes it takes 2 0r 3 years to get to that point. WE’ll see.
By the way I had esophagus cancer and treated with Proton therapy 2 years earlier , and feeling fine.
My suggestion to PC sufferers , obtained second and third opinions and talk to men that went through the same issue.

I am living with cancer, not dying from cancer. Living with cancer means tying to become the best version of yourself every hour of every day. Dying from cancer means fighting it. Yes, it's a battle, a war, either way surviving it is a challenge. The mission is always the same "Make this world a better place."

Good question. My PSA is 0.13. I get tested every four months.

What you experiencing is very common. Somebody was just posting about it in here last week. They also had it go up then down.

Here is a table of what happens if you don’t treat at .2. As you can see if you wait until .5 you’re going to have to go on ADT As well as salvage radiation if it will work at all.

From Ascopubs about what PSA to do salvage radiation.
≤0.2 ng/mL:
Starting at this level maximizes disease control and long-term survival. Patients treated at PSA < 0.2 ng/mL achieve higher rates of undetectable post-SRT PSA (56-70%) and improved 5-year progression-free survival (62.7-75%).
Delaying SRT beyond PSA ≥0.25 ng/mL increases mortality risk by ~50%.
0.2–0.5 ng/mL:
Still effective, particularly for patients with low-risk features (e.g., Gleason ≤7, slow PSA doubling time). The Journal of Clinical Oncology recommends SRT before PSA exceeds 0.25 ng/mL to preserve curative potential.
0.5–1.0 ng/mL:
Salvage radiation remains beneficial but may require combining with androgen deprivation therapy (ADT) for higher-risk cases.

Jeff,

Thanks. No interest is the AUS, or the proAct (which I first read about here). I'm primarily concerned about the slowly rising PSA - that for whatever reason went down the last time I had a PSA test. I was just wondering if anyone else that had surgery for their PCa experienced anything similar and what they had done, if anything, about it. Even at .2 I don't see me doing anything other than AS for quite some time.

After 6 months, I was finally diagnosed with Gleason 9 in Feb/2024. Prostate removed in June 2024 -Stage 3 (a). Total urinary incontinence with AUS installed Jan 2025. PSA 0 and AUS gave me my life back.

After surgery, they don’t usually want to do anything until your PSA hits .2. Then it is important to do something soon because waiting has longer term implications. Bouncing around like you’re saying is not unusual.

Fixed for incontinence
The sling is an option If you’ve had radiation the sling may not work..

Bulkamid is another option not as widely used on men

Another choice is ProACT. It has been discussed in this forum recently. They insert a couple of balloons in your body where your prostate was And they can inflate and deflate them to match what you need.

The AUS (artificial urinary sphincter) is the last option to consider. It is not 100% blockage, there can be leakage.

Not sure I could say 100% leakage proof about any of the products mentioned they just improve it a lot, close to that

ProACT is something I would be interested in, A few other people in this forum have had it and really like it. A urologist I work with, who specializes in incontinence, said that they were working on getting certified for it, and she would look around for another urologist that was already using it at Kaiser.

Contact a urologist to specializes in incontinence. They are the ones to talk to about this.

New here. RALP in 2018, age 72. Gleason 7 (4+3); EPE & PSM unifocal rt posterior; pT3a, pN0. Were I starting again, I would have waited but here I am. Surgeon said surgery was nerve sparing. My nerves disagree. Nothing works down there except to leak - a lot! Minimum six Depends a day since. No other problems until over the past year and a half, when my PSA started to rise in August 2023 from < 0.01, to January 2024 < 0.04, June 2024 < 0.04, December 2024 < 0.07, February 2025 < 0.09 (different lab), April 2025 < 0.07 and May 2025 < 0.06. Concerned, but not worried - yet.

I was on ADT for 8 years, I only stopped because my testosterone will probably never come back. During that time, I had two knees replaced and a hip. The hormones are not a problem. I do take bone strengtheners I was taking Fosamax when having all the joints replaced. One knee 6 years ago, one knee 1 year ago and the hip 18 months ago. I am 77 now, diagnosed in 2010.

Should you stay on ADT? Well, you left out one extremely important thing. What is your Gleason score? That is the guide to how long a person should stay on ADT. Sure, you can cut it short and quit after six months if you have been undetectable for all that time, but you better get a PSA test every month to make sure it doesn’t come right back. If Gleason 8 or higher you should stay on for 18-24 months according to NCCN.. What else was in your biopsy can be a factor, was cribriform, Seminal vesicle invasion or intraductal found. They can make the cancer more serious and require longer ADT. Do you have any other testing like a decipher score?

Lupron/Eligard/Firmagon/orgovyx can cause numerous side effects. Actually due to a lack of testosterone.
Hot flashes
Fatigue
Muscle deterioration
Bone weakening
Brain fog
Depression
Weight gain
Difficulty in breathing

If you have a serious problem with hot flashes, I have a number of solutions so you should just ask for help with hot flashes.

You may be able to go on Orgovyx, A pill that replaces the Lupron shot you take it once a day. Ask your doctor for it? If you must get a Lupron shot get at least a three month shot.