Living with Prostate Cancer: Meet others & introduce yourself

I had 5 radiation treatments back in 2020. After the last one my Dr. told me 'use it or lose it' My first ejaculation after radiation, was a few drops of cum and some blood (which is ok 1st time). But I've never been able to ejacuate since. I get the feeling I am/might.. but nothing happens. Being in my 70's I'm OK with it. But have had leakage issues and accidental outright floods. I periodically do Keigel exercises, and I regain control - a couple of months later the problem is back. The wisest thing would be to do them on some regular basis. It is hard to discern if you are clenching your sphicter muscle or your urinary muscle. I came across a Suzanne Summers ' Thigh Master' It is very helpful tighting the proper muscles.

At this point I cancer free. Of course I don't like the urinary problem, but am greatful the restt of my body is working in decent condition for a man reaching 77 year old.

@cupman
sorry I just got to this thread.............did not see your final decision and treatment experience? I am also considering HIFU in chicago. But I have a high decipher score and am wondering if that tips me over to surgery? what was you decipher score pre -op?

thanks.

bogey golfer,

wondering if you had a decipher score in all your tests??? is that why you went with the hormone therapy on top of the radiation?

Matt

Matt
I was informed that hormone therapy made radiation more effective.
This was in 2020, so the philosophy regarding using hormone therapy might have changed since then.
I never heard of a decipher score during my treatments.
All the best to you!

Hi All -

Looking for any insight as I go down this path. As of March 2025 I was diagnosed with single lesion posterolateral (3+4=7 Grade 2...10-20% Grade 4). Perineural invasion is present with no lymphovascular or extra-prostatic invasion identified.

My biggest challenge I'm facing is being 40yr old (beautiful wife and 2 boys). I'd like to choose highest curative procedure and minimize incontinence and ED.

Looking at RALP and Brachy. Any thoughts from the group? Anyone closer to 40yr old who has gone through this?

CarlH
Hello. I have been following the Mayo Clinic forum for awhile and found many comments very helpful so I will share my journey so far. I was diagnosed late in 2024 with gleason 7 (4+3) prostate cancer. PI-RADS = 5/5, cancer extent: 11/12 cores; 29% of all core tissue; 60% pattern 4. So with that info and previous history of years of Chronic Prostatitis and related prostate pain, removal was the only choice for me. CT scan and bone scans were done and showed cancer had likely not spread so surgery was done April 22, 2025. First PSA done at 6 week period and PSA now at < .1. Down to 1 light pad per day at 6 weeks and 1st visit with urologist/surgeon tomorrow to discuss pathology of removed prostate, lympth nodes and seminal vesicle and path forward. Lots of walking, positive attitude, reading positive info and discussions on the Mayo Clinic Forum have helped me a lot and hopefully my info will be helpful to others.

Have you had genetic testing? Getting prostate cancer, so young is almost always due to genetics, I don’t think they’ve been able to figure out all of the Genetic reasons however. For example, my father died of prostate cancer, and I got it at 62 probably because my mother gave me BRCA2. My brother got it at 76, But he doesn’t have the BRCA2 So he got it much older. Like my father and my brother, I know other people in the same situation one family with three brothers all with prostate cancer and no genetic indicators. Give them 20 or 30 years and they’ll figure it out.

You can get free prostate cancer Genetic testing here

Prostatecancerpromise.org

Don’t check the box that you want your doctor involved or they won’t send the kit until they speak to the doctor. A geneticist will speak to you after the results come to you.

There is no easy answer to what to do with your age. Prostatectomy makes the most sense For a For a longer term solution. active surveillance is even a possibility.

Surgery could leave you with problems with erection unless they were able to spare all the nerves and you got lucky. There are multiple things you can do to resolve ED issues however, and there is an injection you can put in your penis that’ll give you a good erection if nothing else works.

The problem with radiation is that there are side effects that come after 10 or 12 years and you are very young.

There are other treatments, besides radiation and surgery, You might actually be a good candidate with your Low Gleason score. Cyberknife, HIFU , NanoKnife , Cryotherapy and TULSA-PRO are all treatments that work?. A number of people in this forum have had TULSA-PRO and are quite satisfied with the results.

To get more information, you should sign up with Ancan.org and attend their low/intermediate prostate cancer biweekly meetings. They have biweekly two hour online meetings. If you came to a meeting, they would help you right away with options for . The people there have 15 years experience handling prostate cancer treatment. You need some expert advice and they can give that to you. They also have an under 60 group that has people of all ages that have gotten prostate cancer young.

CALL IT A DAY?
Hi All. I am 74 and at 73 I was diagnosed with prostate cancer.
How they found it? I ran the Bismarck Marathon at age 72 and my right hip was a bit of a pain. Dealing with it all summer and going to a chiropractor or should I say chiropractors, Physical therapist and finally my regular family doctor. I have been putting off my Medicare Annual Wellness physical for a few years so my the good doctor decided to run a few tests. The doctor found a PSA level of 4 and sent me to a urologist and an oncologist because I was also anemic and had iron overload. How ever that works? The urologist did the fun digital exam thing and said he did not think it was cancer. He did not find any lumps. Said my prostate was a little large and that prostate cancer is normally slow growing. And my swinging up and down PSA levels indicated something else was causing the now high PSA of 8.5 The urologist than did a new type of urn testing and that indicated cancer. So then he did the more than fun 15 biopsies of my prostate. They all showed different levels of cancer. After a PET Scan I was then sent to the Bismarck Cancer Center and did 35 proton radiation procedures. Also had the Hydrogell placement between the prostate and rectum. That was as much fun as getting prostate biopsies taken. Also had hormone shots. Two in the abdomen below the belly button. Took two nurses to inject Degarelix(FIRMAGON) for 30 seconds on each side. That was actually pretty painless. Not so a month later with another different hormone injection(leuprolide acetate(LUPRON DEPOT) in the upper arm. I am scheduled to take more. I am thinking of cancelling due to the many side effects. That brings up my question! Not only are the side effects beginning to become annoying (gotta love those hot flashes), I need and was scheduled for a hip replacement but decided to do the cancer treatments first. Here is the big but. The hormone injections causes Osteoporosis bone loss which is probably not good if you need the bone to heal around the hip replacement? Another side effect is very high blood pressure (172/120, 171/123) Also now on two new high blood pressure medications. Two hip pain medications, I have Anemia, Fatigue, Mood swings,(now on antidepressant), hot flashes, weight gain, decrease mental sharpness, shrinkage of testicles and penis (gotta dig for Mr Wiggle to pee), Sexual desire (WHATS THAT?) OHTER RISKS INCLUDE: DIABETES, STROKES, HEART ATTACKS AND DEATH FOR MEN TREATED WITH HORMONE THERAPY. The question is do I get another six month artificial protein hormone injection or just call it a day? Other than that, everything is peachy keen and hunky dory my way. I am very grateful for all the many people I have seen. Also grateful that I am still on this side of the dirt. The pain is temporary, death is not. Have a good day All.

I am currently on hormone therapy, about 8 months now. Stage 4 PC, metastatic, lymph node and pelvis. My last PSA was undetectable. All of cancer symptoms are gone including the bone pains. I have the same side effects you described from the hormone therapy and at times I wonder if it is worth it, but considering ADT is keeping my cancer from growing, in fact it is shrinking, I just keep active and manage the side effects as best I can. I am 72 now.

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.