Treatment questions for "younger men" with PC (40 to 60?).

Wishing you the best. I’m 60, was diagnosed at 58. Stage 1 intermediate, Gleason 4+3/7. My psa was almost 6 when my pcp had me get a biopsy because my psa was fluctuating. They discovered I had pc. It was tested genetically and found to be just over the line. I talked to my surgeon and he stated that surgery was not good for my and went to an oncologist. He wanted to try brachytherapy but it wouldn’t work. So it went with high dose proton radiation and adt hormone therapy. I received a total of 3 shots and 5 doses of radiation. I rang the bell in May 23. To date my psa is .13 and both doctors are happy with my recovery. It was a journey and still is but I’m doing well. Get a copy of Surviving Prostate Cancer, if you don’t already, it’s very helpful. I wish you all the best.

Tulsa Pro is good option. In past the only things were RP or radiation, doc not giving you the alternatives there.

My experience
https://connect.mayoclinic.org/discussion/tulsa-pro-initial-experience/

Besides just PSA and Gleason, you need more information regarding the aggressiveness of your disease to make such a difficult decision.

A 7(3+4) is sometimes recommended for active surveillance if other numbers are good:
> % Free PSA
> PSA Density
> PSA Velocity
> PSA Doubling Time
> Bone scan results
> CT scan results
> genomic (biomarker) test results
> genetic (germline & somatic) test results

> Regarding the 7(3+4), what % of that core was “3” and what % was “4”? (The higher the % of “3”, the less aggressive.) If the % of “3” is very high, active surveillance is sometimes recommended.

> In either the MRI or the biopsy report, were the words cribriform pattern, extracapsular extension, seminal vesicle invasion, perineural invasion or intraductal carcinoma mentioned? (If not, that’s good.) Some of those terms are indicators of more advanced disease.

But, it all depends on the aggressiveness of the disease. Data show that for 15 year outcomes, the success rates of active surveillance, radiation, and surgery are statistically equivalent. Your choice mostly depends on what side-effects you’re willing to deal with.

(In 2012 at 56y, I was diagnosed with low-grade, localized prostate cancer (6(3+3) & PSA 4.2), and chose active surveillance; was on active surveillance for 9 years, giving me the opportunity to calmly evaluate all treatment options. Eventually, both Gleason and PSA increased (7(4+3); 7.976). I chose proton radiation (28 sessions), plus 6 months of Eligard, and SpaceOAR Vue.)

Take your time; go into this eyes-wide-open; don’t rush. Collect all the relevant information you can. You’re the one that has to live with the decision. No regrets.

Greg52 - I definitely agree with your doctor, active surveillance at your age would not even be an option to consider. Waiting for cancer to metastasize just doesn't make sense.

For myself - In September 2022 I was diagnosed with PC (Gleason Score 7 - 4/3) at the age of 56. I did a lot of research, and based on my primary life goal of 30+ years of cancer free life, decided that a robotic assisted radical prostatectomy was the only logical choice. The radical prostatectomy was the only option that removed all known cancer, allowed for a physical pathology of the prostate/seminal vesicles/lymph nodes (thus margin definition), and left open more options if the cancer were to return (surgery post radiation would be difficult or impossible). Also, I was unwilling to rely on imperfect imaging tools to detect and guide treatment. I am always skeptical of the latest and greatest technology and the statistical data used to justify their equivalency to the tried & true method.

Whatever treatment plan you decide on, take the time to find a center of excellence for that specific treatment plan and then pick the best doctor at that center of excellence. Your quality of life, for the rest of your life, will depend on the skills of the doctor and support staff.

Good luck with your journey and hope all goes well!!

Jim

Greg52, I was diagnosed with a Gleason 3+4 = 7 in June (59 yrs. old) and had my RARP in December. I used the time between the diagnosis to discuss all my options with different specialists (surgery, radiation, focal). For me surgery made the most sense as focal was just buying time until another treatment was necessary (also had 3 cores of 3+3) and radiation made a plan B option more difficult if the cancer did come back and I wanted to avoid ADT.

This board was helpful in framing questions I had and learning from other experiences, but keep in mind that each of our experiences is anecdotal and a very small sample size. It's really hard to predict what your outcome will be regarding side effects because we are each different. For me, digging into the data published on side effects and outcomes helped. As an example, my surgeon used the hood technique during surgery (https://pubmed.ncbi.nlm.nih.gov/33067016/). It gave me confidence that continence (my big concern second only to cancer free) would be less of an issue than I originally thought (80% of men in this study were pad free in 6 weeks post catheter removal and near 100% by 3 months).

Other things to consider are your age (younger tends to lead to easier recovery), weight (less belly fat makes surgery easier), the experience of your surgeon (I agree with hammer101 that a center of excellence is key and picking the best surgeon for you at that center is equally important), your current level of continence and erectile function, and what type of procedure will be performed based on your diagnosis (nerve sparing and use of the hood technique in reconstruction of the urethra were factors for me).

My recovery was much better than anticipated. The catheter was a nuisance but it's only for 7-14 days. Surgical pain was minimal (Tylenol for a few days). I had some nocturia the first week or two post catheter removal. I woke up every hour or two at night to urinate. That's normal as the bladder needs to get used to being full again. It went away in about two weeks and now I only go once at night at most. I was fully continent at night. I did have a small amount of leakage during the day, mostly when on long walks or a sudden sneeze or laugh, but even then, it was only a few milliliters. I was pad free by six weeks and have had no leakage since regardless of activity level.

My advice is to ask a lot of questions of your surgeon, pick the best you can find at a center of excellence, and do a lot of research on each treatment you're considering.

Best of luck!

Context: I was 41 (2012) when I was diagnosed GS6(3+3) with PSA of 4 and went with RALP in June 2012 and the pathology showed GS7(4+3). I was cancer-free until my PSA in August 2022 showed a PSA of 9 and by October 2022 the PSA was 19 and through imaging (Bone, CT, MRI, PSMA-PET) we found the BCR in 20+ lymph nodes in the iliac region and now on ADT (Leuprolide and Abiraterone) and my PSA is less than 0.1. Life will throw you curveballs and why I had BCR ten years later will be something for science to figure out and for God to share with me, later, much later!

After my RALP the incontinence was negligible, and I was in good shape and Kegels were done for a while before surgery. Since a couple months after surgery even to today, the random motion of my leg can cause like a drop or two of urine, once in a great while. Generally speaking, urinating is really easy, there is never a moment of "slow flow" and I find that I can hold my bladder for much longer than when I had a prostate.

After my RALP the ED was a transition. Within a week or so I could get a sense that signals were being transmitted but no erection. With some daily habits, over a few months, performance came back, but it required lots of coaxing to get it up. I never used Viagra, that might have helped. Eventually it got back to regular action of getting an erection. A big difference was that orgasm happened much sooner, so that took some training to slow it down, which worked.

Just before my ED, I saved sperm for having kids, but I eventually stopped paying for the annual fee for preservation. There are many ways to enjoy having children, they need not be biological. How I felt at 41 wasn't the same at 48, so I stopped the preservation.

I approached my action plan based on life expectancy. At 41 I was aiming for 90 years of life and all science and professionals indicated that surgery was the right course of action. I could have done AS for a while, but it wouldn't have worked for my mental status, I can't filter out things and would think about it constantly, so that wasn't an option.

I was really pleased with the surgery and overall outcome. Getting the BCR 10 years later sucks to put it in simple terms, but it happens, and it can happen months after surgery or many years later, or never. God has a plan, and now I'm travelling a slightly path, I'm fine with it.

Make sure you spend the time to be educated about prostate cancer, spend the time to learn about all parts, not just what is applicable to you right now. Learn about the evolution of treatment and the horrific starting point and where we are now today. Good God, so glad we are to be alive today! Treat it like a course where you want to read one chapter, but you need to read all of them to pass the test.

If you have never planned for life and embraced death and dying, jump into that pool and swim, and then get out of the pool. Prioritize family, friends, experiences. Let go of some material desires. Find a way to see the good in every day, the simplest things are sometimes the easiest to overlook. Stay generally current with global news and realize that we got it pretty good.

here to help and hope this helps.

keep the faith