54M, “favorable” prostate cancer diagnosis — surgery vs. radiation

@jlhiggins01
Sadly we welcome you to the P.C. group. I had the same Gleason score as you. I chose 30 rounds of proton. I was 76 at the time. You are only 54 and that age difference is significant in the difference where medical doctors give recommendation, prognosis, etc. and look at long range side affects.

I don't see where you mentioned a Decipher test, PSMA, type test. Did you have these. Those really help your medical doctors make recommendations. If you have not had them asked your doctors about them.

I make that recommendations not from a watching a seminar as I had those test so can give you personal experience. I was original schedule to have radiation and hormone treatment. After got the Decipher it came back low risk. They changed (two different medical institutions C.O.E.s said identical diagnosis and treatment plan) my treatment plan to radiation only.

Thus can suggest because of personal experience and how much the Decipher test affected me personally would suggestion if you have not gotten it talk to your doctors about getting one.

Those that have had a prosectomy could better guide you on that procedure and the side affects. But know that what another one side affects were does not mean you will have them or not have them. It is an individual thing based on you, your body, your surgeon, and where your have the sugery and the expertise of that institution and surgeon.

I had radiation proton. Talk to your urlogist or R/O about proton and photon differences as they are quite different. Basically you are worried about secondary damage to other organs and tissues. Know that having photon radiation means the radiation enters your body and exit your body thus everything at entry, in, and out of the body is radiated.

Proton is much different. It can enter the body at a lower dose, release it full radiation at a specific location and stop. It dose not continue and exit the body. My R/Os, and PCP all stated this as the major difference in the radiation. The successfulness of both are identical. This is not my opinion nor inferring I am giving medical advise or something I got from a seminar but from my Mayo PCP, urologist, and two different R/Os. All stated studies and their own research with thier patients treated. Proton was consider a less chance of secondary radiation damage. All stated long term research is being done so they are passing on their individual research they know and directly experience with thousands of their patients.

One R/O has done thousands of proton radiations since 2006. Long range research will give difference in those treatments and side affects and damage of each. But your doctors (if have extensive experience with treating P.C.) can give you like mine did their direct personal experience of what they have seen treating P.C. patients.

When you get responses pay attention to those who have had the personal experience with the diagnosis similarity, age, treatment options, and what they had to give you personal experience close to yours. Not just a study, research, seminar, etc. The personal experience of others to share is the reason M.C.C. was started.

Good luck on whatever treatment plan you chose. Just know surgery is surgery and your will be having your prostate remove totally. With any surgery there will be side affects, and they can be minor or serious. It depends on patient, their body, and the expertise of your surgeon and institutions.

If you want more information from a C.O.E. institution contact UFHPTI and asked for their handout. It is free, not pressure to do there. It will give you tons of information and research about photon and proton radiation and the two books every one talks about (one is the Walsh book). That can along with consultations with your urologist, R/Os can help you decide questions to ask your urologist, surgeon, or R/Os.

Good luck and again and hope you have a successful treatment no matter what you chose. But chose what is best for you not what another chose.

@jc76 Thank you for your comment and support. I’ll look into the tests you mentioned. I’m working with doctors at the Mayo Clinic in Rochester, MN, and two tests have been ordered so far: Prostox and ArteraAI. Prostox predicts the likelihood of severe, long-term radiation side effects. ArteraAI predicts cancer progression and overall survival, and helps identify whether a patient would benefit from specific treatments like hormone therapy.

I was told Decipher is most useful for patients considering Active Surveillance, and less helpful if I’m planning to treat. Is there a good counterpoint to this view? Thanks again for your input!

Your PSA isn’t bad (1.9-2.3):

> With such a low PSA, what led you to get an MRI?

> Do you know your % Free PSA?

> Since you have a “4” cell type in your Gleason score, have you had a PSMA PET scan?

> Have you had a biomarker (genomic) test (Decipher, Prolaris, OncotypeDx, or one of the many others)?

> Have you had a genetic (germline) test?

With that additional information, you’ll be better equipped to make this treatment decision.

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As for which treatment —> with success rates comparing surgery with external radiation for localized prostate cancer being statistically equivalent no matter which treatment is chosen (https://www.nejm.org/doi/full/10.1056/NEJMoa2214122), it all comes down to side-effects and quality-of-life (or as that paper concludes, “… the choice of therapy involves weighing trade-offs between benefits and harms associated with treatments for localized prostate cancer.”).

Your choice of treatments will depend on your priorities. One of the understandings I had with my doctors was that quality-of-life and successful treatment were of equal priority for me. That set the basis for us working together and ultimately agreeing on an appropriate treatment plan. (My disease was not unifocal so, that quickly eliminated some options.)

> You’ll have to establish your own quality-of-life priorities in making this decision.

When comparing risks of surgery vs external radiation, I made a list of side-effects of each, then scored and ranked them. Then through personal introspection I made a list of quality-of-life issues that were important to me, scored them, and ranked them. Then, I compared my quality of life introspection ranking with the side-effect rankings of the surgery and radiation. Ultimately, proton radiation ranked best, IMRT second, then SBRT, and finally surgery as a distant last place.

Take the time to figure out for yourself what’s best for you.

As for “long-term effects of radiation (10-20 years down the road),” remember that what radiation doesn’t hit, it won’t affect. If you do choose external radiation, work with your external radiation team to use the latest technology and expertise so as not to overshoot your prostate in order to avoid hitting nearby otherwise healthy tissues and organs (i.e., minimize entry-dose, scatter, and exit-dose).

If you use a rectal spacer and practice consistent full bladder/empty bowel protocol, your risk of GU, GI, rectal, and bowel issues will all be minimized.

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Looking at your Radiation Therapy Risks:

> Potential longer term risk of secondary cancers caused by radiation?: That only happens if they overshoot your prostate. We spent much time talking about how to avoid radiation overshoot.

> Longer term risk of bowel complications?: Again, only happens if radiation hits your rectum; use a rectal spacer (and tell them to still not overshoot).

> Longer term risk of bladder complications?: a bit more risky if they have to treat the prostate near the bladder. Though the risk is small, you can always ask them to “cool” the radiation as they approach your bladder.

> Makes salvage surgery very complex if cancer returns to the prostate?: Though that does have some truth to it, it’s very old-school and doesn’t consider modern treatment techniques. With modern radiation, if there is local recurrence following primary radiation you have many options - focal therapy (e.g., cryo), brachytherapy, and SBRT (because they’re all very targetable), and even re-radiation in some cases. Salvage surgery would still be my far (far) distant choice.

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Additional questions:

1. I’m only 5yr3mo post-proton radiation (w/SpaceOAR Vue) and have seen no 20+ year data. (However, if I do have a recurrence after 20 years, I’ll simply get the appropriate treatment; no differently than I did for my knee surgery for which I had to have surgery again 23 years later.) When my urologist/surgeon told me that with surgery I had a 50/50 chance of ED, “but we won’t know for sure until we get in there,” those odds weren’t good enough for me.

2. My proton radiation treatments were relatively uneventful and I’ve had no lingering adverse after-effects. My wife later told me that if she hadn’t known I was undergoing radiation treatments, she wouldn’t have realized it from any change in me; the short amount of time that I was gone each day for treatment were no different than any other time when I simply left to go shopping or to the gym.

3. I had a localized, Gleason 3+4, w/PSA of 7.976 and chose 28 fractions of proton radiation and had the SpaceOAR Vue rectal spacer. However, a second opinion upgraded the 7(3+4) to a 7(4+3); not knowing which was “right,” we simply added Casodex (Bicalutamide) and 6 months of Eligard to the treatment plan.

For me (5yr3mo later), that proton decision has worked out very well. Today, life is back to the way it was; quality of life was fully maintained.

As the others have said. If you have the PSMA & Decipher tests and they are good I would think many doctors would suggest active surveillance with your low numbers. Personally I would NOT have surgery with your stats. There are just too many other options, focal therapy, SBRT, etc etc....
Get 2nd & 3rd opinions from "centers of excellence" doctors before making ant decisions! You do not need to rush into any treatment. PC is typically a slow growing cancer so you have time to make a decision. Wishing you the best

@jlhiggins01 Hi. My husband was 3+4=7 (Grade Group 2), (6-10% pattern 4). We were streamed into radiation and given a choice of SBRT/IMRT or brachytherapy.

We ordered the PROSTOX tests (Ultra and Standard). He scored "High Risk" on both. Yes, he was one of those... Radiation was out.

At 78 he didn't want prostatectomy. And radiation was out.

You wrote that the surgeon "Mentioned focal therapy as an option for patients prioritizing quality of life if disease is unifocal." "if disease is unifocal" --what an odd thing for a Mayo Clinic, Rochester, MN prostate-doctor to say...

I had RP at a COE and subsequently SRT (salvage radiation treatment).
Because recurrence is a fact of this disease, for men of your age, having a chance at total removal now and reserving SRT for later need may be an attractive Plan A and B.
Just one lay patient's summary.
Best wishes in your decision making and treatment.

@jlhiggins01 -
We probably have some similarities in our profiles, so here goes: diagnosed and treated at 59. Biopsy originally indicated 3+5=8 intermediate unfavorable PCa, downgraded after pathology to 3+4=7 intermediate favorable. Offered hormone therapy & radiation or multiport RP.

As statistical outcomes were similar, I looked at side effects and length of treatment and chose the surgery, no hand-wringing or second-guessing.

I had my surgery at a COE in January 2026. I had partial nerve-sparing surgery. I’ve experienced (and continue to experience) the usual side effects; namely, incontinence and ED.

Incontinence was initially total and constant. Very unpleasant and somewhat demoralizing, but it began to improve after around two months. I did see a pelvic floor physical therapist for about four months and highly recommend that.

I seem to hit a lot of plateaus with my recovery, and it’s very much a two steps forward one step back process. At this point, just shy of eight months after my catheter came out, I can just about manage on two medium-weight pads a day, on a good day. I do have to monitor and regulate my fluid intake, and at least for now, my days of coffee and alcohol are behind me.

With the ED, improvement is much slower. I’m on a daily low dose of Viagra, a weekly full dose along with attempts at achieving an erection, and a daily penis pump routine.

Right now, I’d rate my blood flow into my penis as very good, but the natural mechanism of holding that blood in to develop firmness suitable for penetration is very poor. The sensitivity of my penis is fine, I can reach (dry) orgasm, but the ability of my remaining nerves to feel stimulation to the point of achieving a natural erection is also very poor, though I do get mild sensations from time to time. Care team says all that I’m seeing is the normal part of healing, and that nerves can take years (2-4) to regain their sensitivity, so it’s a long road.

I’ve had zero penis length or girth loss. If anything, since I came out of surgery the same way I went in, I think the pump routine has actually given me a little extra of both.

The surgery itself wasn’t too much of a hassle, as surgeries go. I took a couple of weeks off work, went back on half-days for about 10 days, then back to full time. I have an at-home desk job.

Today, other than the incontinence and ED, I feel absolutely fine. There’ve been definite lifestyle changes (mainly with my diet), but I really don’t “feel” like I have cancer, just more like I had a problem, went in and had surgery to fix it, then came back home.

Two things that I want to mention - this board has taught me that no two surgeries are exactly the same. How you’re built, the state of your health, the prep work you do before surgery, the skill of your surgeon, the work you do after your surgery, and probably a good bit of random luck, will all influence your recovery and results. Some men have little to no incontinence after surgery, and some never get it back. Same with ED.

The other is personal attitude - I’ve always been a shameless optimist, and I’ve always been the type who doesn’t look back on what might have been. Both those characteristics have helped me tremendously. I don’t sit and mourn the “death” of my sex life…what good would it do? I have cancer, I had treatment that happened to knock that out, so what do I do going forward? That’s how I look at it.

Same with incontinence, I don’t sit home and think that I can’t go do anything because I don’t have very good control of my bladder. I slap a pad in my underpants, pack a few in my go bag, and I go. We just got back yesterday from a four-day trip down to Epcot for their food & wine festival, for example. Did I have to work around my bladder issues? Yep. Was it inconvenient at times? Yep. Did we go anyway and have a good time? Yep!

Whichever way you go, listen to your docs, follow their recovery advice, educate yourself a little about your cancer (but don’t become consumed by it), and keep living your life.

If I was in your shoes, I would first look into focal therapy, like Tulsa. And definitely get a Decipher test and second opinions from another urologist and also radiologists.

@brianjarvis I was under the impression (uneducated) Proton Rad could be used in Sbrt or Imrt.
May I ask how your Proton rad was delivered?
Also, did you get a Proxtox prior to treatment?
Thanks

You have time to decide, and the right tests have been ordered. ArteraAI will give a recommendation on AS and on if ADT will make much difference based on your biomarkers. Prostox will give a good look at late effects even though it is based on photon radiation. I take it you have check that your insurance will cover proton for prostate cancer (90%+ will not). If not check with the people who handle payment at Mayo. You will not be the first with your insurance and they usually know if it will be approved, need to be appealed, etc. to get Proton. They will also be able to tell you how much out of pocket it will cost if no approval. There are studies that show no long-term advantage of proton over photon for prostate cancer. Most insurance will also not cover the focal treatments. Last thing you need is to decide on a treatment and then not be able to get it because of insurance.

Except for AS and maybe some focal treatments sex will be different. The prostate produces 90%+ of the fluid so orgasms will be dry even with no ED. If ArteraAI shows low risk of metastases you may want to consider AS. In that case get the Decipher to make sure it agrees with ArteraAI.