1. < Prostate Cancer
Profile picture for jmgpdx68

Doc just recommended treatment options, head is spinning! Thoughts?

Posted by jmgpdx68 @jmgpdx68, 3 days ago

Hi there! Brand new here after meeting with my urologist today.
My basic story:
57 yo white male, good health, no health problems except slightly elevated BP and HDL numbers
Elevated PSA for years (4.x range) with no action
Referred to urologist 2024 with PSA = 4.741
First biopsy Nov 2024, two sections showed 3+3 and 3+3
Active surveillance, supplements, etc.
Next PSA April 2025 = 4.968
Second biopsy Dec 2025, two sections showed 3+3 and 3+4
Followup on results was today 1/6/26
With the jump in the 2nd sample's number, doc recommends treatment
He laid out surgery, radiation, and HIFU as options (he is a licensed HIFU provider so emphasized that one).

My head is spinning with the side effects of surgery and radiation, but HIFU is out of my price range. At only 57 and happily married I'm struggling with impotence/incontinence potentialities (better than the alternative, of course, but...)

Thoughts from this group?

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

Profile picture for mjp0512
mjp0512 | @mjp0512 | 2 days ago

Hi and welcome. So sorry you had to find your way here. My journey is a little different from yours. The bad news...my cancer was already metastatic past the point of being operable, so I never had to make a choice of surgery vs radiation. The good news...I never had to make the choice between surgery and radiation. I don't know what my decision would have been if I had to choose, but I know I would have researched the hell out of it until I was completely comfortable with the decision. Even in my case, I came here and just searched every post for a link to an article, a study, or table that had any relation to me and voraciously studied to make sure I was receiving the accepted standard of care relative to my circumstance. I wish you all the best and please keep us in the loop as to your decisions.

REPLY
Profile picture for jcf58
jcf58 | @jcf58 | 2 days ago
In reply to @jmgpdx68 "@jcf58 Thanks for the recommendation! I'll mention this to my urologist, since he's certified in HIFU...." + (show)
Profile picture for jmgpdx68 @jmgpdx68

@jcf58
Thanks for the recommendation! I'll mention this to my urologist, since he's certified in HIFU. The next step overall is to do an MRI and see what things really look like in there, so more info to come.

Jump to this post

@jmgpdx68 heavyphil is right that your Doctor is unlikely to recommend Tulsa Pro if he doesn’t do it. I talked to seven doctors before I decided and each one of them recommended what they were familiar with except one. She mentioned that Rochester Mayo was doing some advanced things and gave me the name of the doctor. That’s how I ended up doing Tulsa Pro.

REPLY
Profile picture for Sicetnon3
Sicetnon3 | @sicernon3 | 2 days ago
In reply to @survivor5280 "Let me add another thing. I was super concerned with ED and incontinence and eventually came..." + (show)
Profile picture for survivor5280 @survivor5280

Let me add another thing. I was super concerned with ED and incontinence and eventually came to the realization that neither would be the end-all. There are many steps you can take for ED (my doc had me on tadalafil for 30 days prior and 1 year post purely as a precaution, nearly off it now) with the last stop being an implant with a button in your scrotum to turn things on and off. But, if you have no ED now and get nerve sparing surgery then you have a very high likelihood of zero long term ED issues. For incontinence you can get slings and artificial sphincters installed to help. These are not fun things to experience and I decided that I could live without an erection if I had to but I would not live in a diaper my entire life and had plans regarding that if it were to be my long term prognosis (and no, not suicide).

I'm the success story, for better or worse, and feel free to DM me if you want to chat more.

Jump to this post

@survivor5280 an honest and helpful reply. 🙏🏼

REPLY
Profile picture for jbnewby1313
jbnewby1313 | @jbnewby1313 | 2 days ago
In reply to @jeffmarc "One thing you want to find out is what percentage of the 3+4 had cancer? Also,..." + (show)
Profile picture for jeff Marchi @jeffmarc

One thing you want to find out is what percentage of the 3+4 had cancer? Also, what percentage of it was a four. It’s possible if it’s very low percentages, you could go on active surveillance for another six months to a year.

Here is a video with Dr. Laurence Klotz, one of the experts on active surveillance. He can give you answers as to why you would or would not be a good candidate for active surveillance.


If you have a high percentage of four, then you could get a PSMA pet scan to see if it is spread anywhere else. They only biopsy about 1% of the prostate when they do that procedure so a lot of the prostate has not been checked.

You might want to get a second opinion on your biopsy. There are doctors that are specialists in doing that and they can give you a lot more information about what’s going on but it will cost you $500.

Two of the best people that do this are

Dr. Epstein biopsy
https://advanceduropathology.com
Dr. Zhou

Send an email to Ming.zhou@mountsinai.org to inquire about a second opinion and ask for his specific instructions for the process.

The long-term results from surgery and radiation are about the same. If you get surgery and it comes back, you can get radiation. If you get radiation to start, then surgery is very difficult and only a few Specialists do it.

If you were to get surgery, you want to find out if your doctor could do nerve sparing, which can usually allow you to get an erection after.

If you get radiation, you will probably not have ED right away, after a couple of years, some people do lose the ability to get an erection. If you get surgery with nerve sparing, you may take a while to get your erection back, but it will usually come back.

Jump to this post

@jeffmarc if a guy gets radiation therapy for his prostate then why would he even get it removed? My Doctor at the Mayo Clinic said that there is really no reason to have the prostate removed after radiation.

REPLY
1 reply
Profile picture for jeff Marchi
jeff Marchi | @jeffmarc | 2 days ago
In reply to @jbnewby1313 "@jeffmarc if a guy gets radiation therapy for his prostate then why would he even get..." + (show)
Profile picture for jbnewby1313 @jbnewby1313

@jeffmarc if a guy gets radiation therapy for his prostate then why would he even get it removed? My Doctor at the Mayo Clinic said that there is really no reason to have the prostate removed after radiation.

Jump to this post

@jbnewby1313
In rare cases someone will get radiation to the prostate and it won’t be sufficient to stop their PSA from rising due to material in that area, Material that is the leftover melted down prostate tissue.

There are surgeons who specialize in removing that material. This is not a normal situation, but it does occur.

REPLY
Profile picture for chippydoo
chippydoo | @chippydoo | 1 day ago

Sounds about right for after diagnosis emotions. I would suggest sitting back for a week or two and breaking down each treatment plan with your wife and bullet pointing the various treatment options and potential permanent side effects for the "new you". Embracing the "new me" (acceptance) was an important aspect in my post treatment life. Include your wife in the process asking how she also feels about each one. Weigh how important physical intimacy is while reviewing the list with potential outcomes. If the two of you have issues breaking it down perhaps a couples therapist could be added to the mix. One thing you have is some time to process it and get a potentially mutual outcome that meets your couple and treatment needs. Us Gleason 9's and 10's needed to get moving. Due to your testing vigilance you have set yourself up with many options for a successful treatment. Good luck and best wishes on a successful treatment, outcome, and continuance of your good marriage and life.

REPLY
Profile picture for briang1958
briang1958 | @briang1958 | 1 day ago
In reply to @northoftheborder "Gleason 3+4 is the lowest result that even counts as cancer, so after you get some..." + (show)
Profile picture for northoftheborder @northoftheborder

Gleason 3+4 is the lowest result that even counts as cancer, so after you get some follow-up tests (radiology scans, germline genetic testing, etc) to confirm you're low risk, active surveillance — vs surgery or radiation — would be a very reasonable choice.

You're in emotional shock right now — that's normal, and we've all gone through it with a new prostate-cancer diagnosis — but trust that before long, you'll adjust to your new normal and your life won't be all that different than it was before, especially since they caught this so early.

Best of luck!

Jump to this post

@northoftheborder - New Normal? After 12 years I wonder if just letting it take me wouldn't have been the best choice. Looks like I am going back on ADT (nothing is normal), think I'll ask how painful just not doing anything would be and how long it will take.

REPLY
2 replies
Profile picture for briang1958
briang1958 | @briang1958 | 1 day ago
In reply to @briang1958 "@northoftheborder - New Normal? After 12 years I wonder if just letting it take me wouldn't..." + (show)
Profile picture for briang1958 @briang1958

@northoftheborder - New Normal? After 12 years I wonder if just letting it take me wouldn't have been the best choice. Looks like I am going back on ADT (nothing is normal), think I'll ask how painful just not doing anything would be and how long it will take.

Jump to this post

@briang1958 - Oh maybe I should go off forum for a while - I find I am probably not helping anyone and not a good cheerleader for this.

REPLY
1 reply
Profile picture for northoftheborder
northoftheborder | @northoftheborder | 1 day ago
In reply to @briang1958 "@northoftheborder - New Normal? After 12 years I wonder if just letting it take me wouldn't..." + (show)
Profile picture for briang1958 @briang1958

@northoftheborder - New Normal? After 12 years I wonder if just letting it take me wouldn't have been the best choice. Looks like I am going back on ADT (nothing is normal), think I'll ask how painful just not doing anything would be and how long it will take.

Jump to this post

@briang1958 I'm so sorry to hear that. I've been on ADT and Apalutamide continually since 2021, and expect to be for the rest of my life, but while there are aspects I don't like, I generally tolerate it very well, and am grateful for the extra years it's giving me. I do understand that's not the case for everyone though.

For the OP, with Gleason 3+4, he might never even need surgery or radiation, much less ADT, but if he does end up getting a medical intervention, he'd probably be on ADT for only a short time, unlike us.

REPLY
Profile picture for northoftheborder
northoftheborder | @northoftheborder | 1 day ago
In reply to @briang1958 "@briang1958 - Oh maybe I should go off forum for a while - I find I..." + (show)
Profile picture for briang1958 @briang1958

@briang1958 - Oh maybe I should go off forum for a while - I find I am probably not helping anyone and not a good cheerleader for this.

Jump to this post

@briang1958 As long as you're talking about your own experience (which you are), I think what you're sharing is valuable. People newly diagnosed with PCa want to know all the possible outcomes, not just the good-news ones.

REPLY
1 reply
View MoreView Less
Please sign in or register to post a reply.