1. < Prostate Cancer

Don’t know what I don’t know…diagnosed 5/13/25

Posted by mjp0512 @mjp0512, 4 days ago

First post here but, not after spending countless hours reading countless pages of this forum. First, let me say thank you to all who take the time to share their experiences. As a newbie, it is welcoming to know I’m certainly not alone in this newfound journey.

My story…I'm a retired 69yo heart failure patient. I live a mostly sedentary life but do walk 3-4 miles per day. Cardiologist said knock off the weightlifting a few years back. In March 2025, I went to my PCP for what I thought to be a UTI because of difficult, itchy urination. She ordered a urinalysis and PSA. Urine negative, PSA = 25. Referral to urology followed. 2 days later, I returned to my PCP for significant side and back pain. She ordered full blood panel and repeat PSA. That was 8AM, at 10AM she called, “Your blood work came back. You are in renal failure. This is an emergency. Get to the emergency room now, they are expecting you. Oh, and your PSA is now 30.” Determination was made the renal failure was caused by urine retention due to enlarged prostate. A couple of days with a foley and my kidneys were close enough to normal function to go home. (with a foley)

Off to urology a few days later and a biopsy was ordered. Gleason 9 (5+4), w/ 100% PTI on 10 of 12 samples and LVI and PNI noted on 2. I was informed that I am not a surgical candidate. That was 5/13/25. Urologist ordered PET/CT which was completed Fri. 6/6. I’ll know the results during appt on Tue. 6/10. He also gave me a month supply of Orgovyx to begin taking after the PET with the initial goal of getting my prostrate down to a size where I can pee on my own again. (still on intermittent catheterization).

Well, that’s it so far. Given the biopsy results, I’m fairly confident the results of the PET are pretty much going to suck. I am here, not so much with any questions yet, although I’m sure that will change. But, more so, to learn what questions to ask. I have 7 pages of notes, so far, from just reading posts and I thank you all for your contributions. Please comment with anything you wished you asked at my point in your journey or any side effects of treatment the docs typically neglect to mention.

I’m sure my urologist will be sick of me by the end of Tuesday’s appointment. Stay well!

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

surftohealth88 | @surftohealth88 | 3 days ago

Hi Mjp, so sorry to hear that you have to deal with heart issues on top of this diagnosis. Other members here have much more experience and knowledge about gleason 9 cancer with local spread, so I will let them chime in about that.
I just wanted to say that perhaps you can consider inclooding swimming in you exercise routine. It is relaxing, low impact, engages all of the muscles and it can be adjusted to the level of what is comfortable for you. Also, cool water may help with possible hot flashes that sometimes appear as side effect of ADT therapy. By the way, you are really doing great job with long walks 🙂
I am glad that you found this forum and I am wishing you very successful and complete eradication of PC . It seems that you have a good team of doctor's so far. They were very fast to act and ordered all necessary tests and were proactive with putting you on Orgovyx immediately. You can always ask for a second opinion and visit ( if you can ) a big medical center designated as "Cancer Center of Excellence".

REPLY
1 reply
rlpostrp | @rlpostrp | 3 days ago

That was a great, thorough summary. It doesn’t matter now, but I’m curious whether you had routine annual physical exams? If so, and as an elderly man, I am surprised that you physician did not do DRE and order PSA tests. It would have caught your cancer earlier.
Keep your fingers crossed: like many men, you may live another 10-20 years and die of something else, since prostate cancer grows slowly. The 25 PSA and 9 Gleason are not ideal, but you never know. My father had prostate cancer for about 18-20 years, never had the radical prostatectomy, had a PSA of over “200” (yep) at diagnosis, and lived to 99 years 10 months old. Everyone, and every prostate cancer case is unique, but keep a positive mindset. I just had radical prostatectomy that I now question whether it was prudent. My PSA was 6.1. Gleason Score 3+4 =7, with 3 biopsy cores normal, 3 cores Gleason 3, and 6 3+4, with only 10% as “4”, but I am a pT3b because it spread to my left seminal vesicle (no tumor though), plus my surgeon didn’t get “all” of my prostate out…there were >3mm “surgical margins”. So, in my next follow-up at 3 months post-surgery, my doctor wants to talk about radiation. For now, I can only hope for a < 0.1 PSA, and to regain my urinary continence. Despite the surgical report claim that “neurovascular bundles were preserved”, you never really know…who can check that - no one. All I know is that I am incontinent and have ED…absolutely dead down there.

REPLY
1 reply
brianjarvis | @brianjarvis | 3 days ago
In reply to @mjp0512 "Thank you for taking the time for such a detailed reply. I'll try to hit all..." + (show)
@mjp0512

Thank you for taking the time for such a detailed reply. I'll try to hit all your points.

> Last PSA prior to 2025 was in 2015 and that was 0.4. My PCP retired and I didn't pay much attention to it (my bad) since my family history is heart disease with zero cancer. All males in my family for the last 5 generations have died of heart disease prior to their 69th birthday, except for me. I really thought I'd be dead by now.

> PNI (perineural invasion) was noted on the biopsy report. No MRI. Pathologic stages are entered as percentage scores in a Partin Table:

Organ confined - 19% Capsular penetration - 30%
Seminal vesicle - 28% Lymph node - 22%

> There is a very brief mention of cribriform / intraductal histology related to a recommendation for Germline Genetic Testing.

> Radiation treatment was briefly discussed but options will be detailed once PET results are received.

> I started Orgovyx the day after the PET

I think I got it all. Thanks again!

Jump to this post

Ten years between PSA tests is a long time - as former Pres Biden just found out. But, what’s done is done……

These things are rarely straightforward; the more you get into this, it sometimes gets more complex. You’ll need to dig into it, learn more, self-advocate, and share in the decision-making to get the best outcomes.

Regarding exercise —> walking 3-4 miles/day is great (and well-documented) for overall health. But, the toxic side-effects of ADT require a bit more (as this clinical trial demonstrated): https://journals.lww.com/acsm-msse/fulltext/2023/04000/resistance_exercise_training_increases_muscle_mass.2.aspx)

However, walking 3-4 miles/day will help with the emotional/mental health side-effects of ADT (as these doctors recommended in this PCRI conference a few years ago): https://m.youtube.com/watch?v=8n0cIhamFvo

But, since you might not be able to exercise the way that these doctors recommended: https://m.youtube.com/watch?v=YE61HSAsFb0), you’ll have to come up with alternatives to offset the physical side-effects of ADT —> alternative exercises like like using your own bodyweight, or trying TRX, or taking a water exercise class (which is what I did at one point). There are many resistance-training alternatives to weightlifting.

Another question —> You’ve mentioned “PET/CT” and “PET results.” Is that a PSMA PET scan that you recently had?

All the things you mentioned will guide discussions with your medical team. If they use standard NCCN guidelines (see attached), there are general treatments they’ll recommend for you. But, you’ll have the final say in what happens.
REPLY
1 reply
jc76 | @jc76 | 3 days ago

@mjp0512
I can see many on MCC have reached out to you. That is why MCC is here.

From our original post you sure have gone through a lot.

Asked questions and all of us will try to give you our experiences and hopefully provide inspiration to you.

REPLY
mjp0512 | @mjp0512 | 3 days ago
In reply to @surftohealth88 "Hi Mjp, so sorry to hear that you have to deal with heart issues on top..." + (show)
@surftohealth88

Hi Mjp, so sorry to hear that you have to deal with heart issues on top of this diagnosis. Other members here have much more experience and knowledge about gleason 9 cancer with local spread, so I will let them chime in about that.
I just wanted to say that perhaps you can consider inclooding swimming in you exercise routine. It is relaxing, low impact, engages all of the muscles and it can be adjusted to the level of what is comfortable for you. Also, cool water may help with possible hot flashes that sometimes appear as side effect of ADT therapy. By the way, you are really doing great job with long walks 🙂
I am glad that you found this forum and I am wishing you very successful and complete eradication of PC . It seems that you have a good team of doctor's so far. They were very fast to act and ordered all necessary tests and were proactive with putting you on Orgovyx immediately. You can always ask for a second opinion and visit ( if you can ) a big medical center designated as "Cancer Center of Excellence".

Jump to this post

Thank you for the good wishes and swimming suggestion. I'll have to find a pool.

REPLY
mjp0512 | @mjp0512 | 3 days ago
In reply to @rlpostrp "That was a great, thorough summary. It doesn’t matter now, but I’m curious whether you had..." + (show)
@rlpostrp

That was a great, thorough summary. It doesn’t matter now, but I’m curious whether you had routine annual physical exams? If so, and as an elderly man, I am surprised that you physician did not do DRE and order PSA tests. It would have caught your cancer earlier.
Keep your fingers crossed: like many men, you may live another 10-20 years and die of something else, since prostate cancer grows slowly. The 25 PSA and 9 Gleason are not ideal, but you never know. My father had prostate cancer for about 18-20 years, never had the radical prostatectomy, had a PSA of over “200” (yep) at diagnosis, and lived to 99 years 10 months old. Everyone, and every prostate cancer case is unique, but keep a positive mindset. I just had radical prostatectomy that I now question whether it was prudent. My PSA was 6.1. Gleason Score 3+4 =7, with 3 biopsy cores normal, 3 cores Gleason 3, and 6 3+4, with only 10% as “4”, but I am a pT3b because it spread to my left seminal vesicle (no tumor though), plus my surgeon didn’t get “all” of my prostate out…there were >3mm “surgical margins”. So, in my next follow-up at 3 months post-surgery, my doctor wants to talk about radiation. For now, I can only hope for a < 0.1 PSA, and to regain my urinary continence. Despite the surgical report claim that “neurovascular bundles were preserved”, you never really know…who can check that - no one. All I know is that I am incontinent and have ED…absolutely dead down there.

Jump to this post

Thanks. It's my fault for not having regular exams. My long-time primary care doc retired in 2015 and I never got another until this year. I did have bi-annual cardiology checks to monitor the CHF so blood panels were done but I never pushed for PSA. As I said above, I thought I'd be dead of heart failure by now and I still think it will kill me long before prostate cancer, but we'll see what the scan says. I wish you well in your continued recovery.

REPLY
mjp0512 | @mjp0512 | 3 days ago
In reply to @brianjarvis "Ten years between PSA tests is a long time - as former Pres Biden just found..." + (show)
@brianjarvis

Ten years between PSA tests is a long time - as former Pres Biden just found out. But, what’s done is done……

These things are rarely straightforward; the more you get into this, it sometimes gets more complex. You’ll need to dig into it, learn more, self-advocate, and share in the decision-making to get the best outcomes.

Regarding exercise —> walking 3-4 miles/day is great (and well-documented) for overall health. But, the toxic side-effects of ADT require a bit more (as this clinical trial demonstrated): https://journals.lww.com/acsm-msse/fulltext/2023/04000/resistance_exercise_training_increases_muscle_mass.2.aspx)

However, walking 3-4 miles/day will help with the emotional/mental health side-effects of ADT (as these doctors recommended in this PCRI conference a few years ago): https://m.youtube.com/watch?v=8n0cIhamFvo

But, since you might not be able to exercise the way that these doctors recommended: https://m.youtube.com/watch?v=YE61HSAsFb0), you’ll have to come up with alternatives to offset the physical side-effects of ADT —> alternative exercises like like using your own bodyweight, or trying TRX, or taking a water exercise class (which is what I did at one point). There are many resistance-training alternatives to weightlifting.

Another question —> You’ve mentioned “PET/CT” and “PET results.” Is that a PSMA PET scan that you recently had?

All the things you mentioned will guide discussions with your medical team. If they use standard NCCN guidelines (see attached), there are general treatments they’ll recommend for you. But, you’ll have the final say in what happens.

Jump to this post

Many thanks for the all the links. The more I can learn, the better decisions I can make.
Oh, and yes, it was a PSMA PET scan.

REPLY
mjp0512 | @mjp0512 | 3 days ago

PSMA PET results posted in new discussion...

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