Info is in, now decision time. Thoughts welcome.

Posted by thig350 @thig350, 2 days ago

So, I've learned a lot from this support group since I found out in Nov. 2025 that I was on the path to joining the PCa club. I have noticed that everyone's circumstances are different (even when they are similar), different bodies react differently to treatment(s), some folks visit this group with good experiences and some with bad. But one thing is consistent; folks here are knowledgeable and helpful. I am now at the point where I have to make a decision regarding the best course of treatment for me.

I am 57 years old. My PSA is 8.7, MRI was PIRADS 5, one lesion and no spread outside the size 35 prostate, biopsy came back one 2mm tumor out of an 8 mm core; 12 cores taken; Grade 3 intermediate unfavorable 4+3 cribriform present. PET scan showed no spread.

Radiologist recommends (if I choose radiation) Brachy treatment followed by 15 sessions of external radiation oh and also hormone treatment.

Urologist who is also a surgeon recommends removal as I am younger and will most likely recover well.

For me, being younger, I am very reluctant to have radiation as I do not want to deal with side effects now or down the line nor do I want to have an unrelated (or related for that matter) cancer appear down there in the surrounding organs/tissue etc. and radiation is off the table or more complicated because I already had it.

With surgery, I would like to get it out (cribriform is a concern for me) and then if something pops up later then hit it with salvage radiation. But I am concerned with immediate incontinence and ED with the unknown recovery in these areas... I've been told that nerve sparing is a possibility but maybe not for sure until the doctor gets in there to see how things are.

I'm leaning toward surgery to get it out under the simple thought of "prostate has cancer, it is contained, so remove said prostate" and then allow the pathologist to examine the prostate to see with is going on with it.

So, anyone have any thoughts on maybe what they'd do or consider if in my shoes?

Thank you in advance!

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

@thig350
I am older but still would like all functions and cancer gone.
74, PSA 2.93, decipher .46, prostate 69cc, no cribiform, PI-Rads 4 on bilateral pc, GG2 Gleason 3+4.
My urologist Dr. Mathew Truong, MD Rochester NY, performs and recomends the Hood technique for nerve sparing. Great chance of pad free in a few weeks to a 3 months.
@heavyphil posted a nerve sparing video and other particulars.
Of course EBRT and SBRT have been suggested as well.
Wishing you the best procedure you can get.

Ray
585-259-9308

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Find the best surgeon you can and unless you sought someone out after your diagnosis it is probably not your urologist. Make sure they have good results with RP. There are two factors with nerve sparing 1) where the cancer is since they cannot be spared if the cancer is next to them 2) the skill of the surgeon because even if they can be spared (and reported spared) if damaged you can still have ED. Much the same for incontinence. Read Wheel1 posts. Decide what procedure you want in the surgery. At your stage, recurrence after RP is highly related to positive margins. Again, the skill of the surgeon becomes your destiny.

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Hello, and sorry to hear what you are dealing with. My husband was diagnosed at 53 years old, 4 years ago. He had removal. His PSA was 14.4, PIRADS4, Grade 3, intermediate unfavorable. Gleason score 3+4.
During surgery they saw that it got outside the prostate. The surgeon said "nerve sparing surgery". Fast forward to Nov 2023 his PSA started rising. We watched and waited. Feb 2025 his PSA was .2 and they did a PSMA scan but it was "clear". 8 months later, Oct 2025 PSMA scan done again and it lit up in 2 pelvic nodes.
What we learned along the way, and sharing so it may help you. Here is goes....MOST doctors DO NOT discuss ED issues. You NEED penile therapy, BEFORE AND AFTER surgery. Depending on how strong your erections are prior to surgery will help determine the therapy. And I mean...Injections and a pump. You will lose length in the penis after surgery. Even if a surgeon says "nerve sparing" don't believe it. Even if they TOUCH a nerve during surgery, it can damage the nerve. Most nerves go to "sleep" for 18-24 months after surgery. That is why it is crucial for penile therapy. The penis is a muscle, if you don't give it therapy, it will cause atrophy. Please look up Dr. John Mulhall, from Memorial Sloan Kettering, one of the top 3 sexual health experts in the US. You can find him on Youtube. Google his name and he has written a book and numerous papers. HIS biggest gripe is that his own colleagues at MSK, do not refer men who have prostate cancer, to see him before any treatment that they have.
KEGELS, KEGELS, KEGELS.....lots of core exercises will help with urinary issues after surgery. Also look up Dr. Kwon from Mayo Clinic in Rochester, MN. Extremely knowledgeable. Also, go and get a 2nd and 3rd opinion. Ask for a DECIPHER Score test. Ask for an ARTERA AI Test. Get in shape now if you have a few pounds to lose.
My husband is on hormone meds and just finished 25 rounds of radiation. He is a mental mess. Severe depression from so many things. Join all of the prostate cancer FB groups that you can. Educate yourself!! Best of Luck!!!

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Profile picture for jim18 @jim18

Find the best surgeon you can and unless you sought someone out after your diagnosis it is probably not your urologist. Make sure they have good results with RP. There are two factors with nerve sparing 1) where the cancer is since they cannot be spared if the cancer is next to them 2) the skill of the surgeon because even if they can be spared (and reported spared) if damaged you can still have ED. Much the same for incontinence. Read Wheel1 posts. Decide what procedure you want in the surgery. At your stage, recurrence after RP is highly related to positive margins. Again, the skill of the surgeon becomes your destiny.

Jump to this post

@jim18 "Find the best surgeon you can and unless you sought someone out after your diagnosis it is probably not your urologist. .... There are two factors with nerve sparing ... 2) the skill of the surgeon .... Again, the skill of the surgeon becomes your destiny."

As I've mentioned here before, my urologist was willing to do the robotic surgery (he did 35 per year), but he gave me John Walsh's "Surviving Prostate Cancer" book, which recommended finding the most experienced surgeon. I did at U. Wash. Medical Center (part of the Fred Hutch Cancer Center), one who was doing 115 per year.

That surgeon recommended radiation for my age (then 75), but I wasn't having any of that & had him do the Robot-Assisted Laparoscopic Radical Prostatectomy anyway. M y surgeon wanted me to lose some weight (it makes the procedure easier) even though my BMI was less than 25. Some men are ineligible for surgery based on weight.

Piece of cake. No pain after or since, 5 tiny (1/2") scars which have long since healed, & no incontinence. I chose non-nerve-sparing because the cancer had reached the surface of the gland.

I have strongly recommended surgery here as a result, & I thought my experience was typical. However, many here do not have the same experience. Of course, most men with really good experiences don't come here afterwards.

So, what's the difference? In my opinion, it's as they say in real estate, "surgeon, surgeon, surgeon."

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Profile picture for jnlracer18 @jnlracer18

Hello, and sorry to hear what you are dealing with. My husband was diagnosed at 53 years old, 4 years ago. He had removal. His PSA was 14.4, PIRADS4, Grade 3, intermediate unfavorable. Gleason score 3+4.
During surgery they saw that it got outside the prostate. The surgeon said "nerve sparing surgery". Fast forward to Nov 2023 his PSA started rising. We watched and waited. Feb 2025 his PSA was .2 and they did a PSMA scan but it was "clear". 8 months later, Oct 2025 PSMA scan done again and it lit up in 2 pelvic nodes.
What we learned along the way, and sharing so it may help you. Here is goes....MOST doctors DO NOT discuss ED issues. You NEED penile therapy, BEFORE AND AFTER surgery. Depending on how strong your erections are prior to surgery will help determine the therapy. And I mean...Injections and a pump. You will lose length in the penis after surgery. Even if a surgeon says "nerve sparing" don't believe it. Even if they TOUCH a nerve during surgery, it can damage the nerve. Most nerves go to "sleep" for 18-24 months after surgery. That is why it is crucial for penile therapy. The penis is a muscle, if you don't give it therapy, it will cause atrophy. Please look up Dr. John Mulhall, from Memorial Sloan Kettering, one of the top 3 sexual health experts in the US. You can find him on Youtube. Google his name and he has written a book and numerous papers. HIS biggest gripe is that his own colleagues at MSK, do not refer men who have prostate cancer, to see him before any treatment that they have.
KEGELS, KEGELS, KEGELS.....lots of core exercises will help with urinary issues after surgery. Also look up Dr. Kwon from Mayo Clinic in Rochester, MN. Extremely knowledgeable. Also, go and get a 2nd and 3rd opinion. Ask for a DECIPHER Score test. Ask for an ARTERA AI Test. Get in shape now if you have a few pounds to lose.
My husband is on hormone meds and just finished 25 rounds of radiation. He is a mental mess. Severe depression from so many things. Join all of the prostate cancer FB groups that you can. Educate yourself!! Best of Luck!!!

Jump to this post

@jnlracer18
I am very sorry for your husband’s current mental state, and certainly his side effects would haunt anyone having those.
Remember though everyone has different experiences related to ED and incontinence after Surgery. It IS all related to the skill of your Surgeon. PERIOD. Everyone does not need penile therapy before and after surgery nor injections and pumps and most patients do not. You will hear more of the doom and gloom as many on support groups have unfortunately fallen into the side effect percentage. That is literally the sky is falling. Loss of penile length also does not occur in today’s latest surgical technology. Both incontinence and ED are becoming less of an issue depending on the Surgeon, his experience, his surgical technique and latest surgical equipment.

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I second the recommendation of Dr Kwon. His (and others) videos on pcri.org are extremely helpful. My wife and I are older but we are still growing closer together every year (even with ED). It’s worth the effort to preserve but life can still be enjoyable either way.

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I would do just what you said: surgery and if necessary many years from now, radiation.
Your surgical pathology will tell you a lot.
Phil

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I opted for surgery same reasons you gave. No regrets. Surgery was easy. Post OP confirmed contained. I had robotic nerve sparring. I ended up with ED and INC. I would still not change anything. ED has been fixable. INC has been a pain but there are options. Quite possibly you have no issues.

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I went through the same thing you are going through, and i chose surgery. Im 57yrs old, and I just wanted it our of me, plus, if it came back after radiation, then surgery was most likely out of the question. Im on 5 weeks post surgery, and already feeling a lot better. You will be surprised how fast the time flys by. It seems like yesterday i was being wheeled into the operating room, and now that was a month ago. I do wear pads, for i do leak sometimes, and i also get a full bladder more frequently. I also get up in the middle of the night at least 2-3 times a night, but hoping it gets better over time. I was told that i did have nerve sparring surgery, but i still have no action down there what so ever, but its also only been 5 weeks. You make the decision that works for you my friend. You got this!!

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BIOPSY slides:
Analogue reread at Johns Hopkins or at other comparable center
AI Digital reread at ARTERRA...(2ndary benefit: advice on adding a second hormone drug)

MRI:
Analogue reread by radiologist that does prostate reads a lot (Healthy & Cancer looks similar)
Digital: Deep View Imaging.com AI comparison of MRI and biopsy reports of thousands.

GENETICS: add to Decipher
PROSTox (MirDX) a mouth swab evaluates whether the risk of DELAYED (months/years later) of urinary tract symptoms greater than Grade 2 'RTOG'] is LOW (< 5%) or HIGH (>15%) for external beam radiation therapies. (acute symptoms are the same and resolve similarly)

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