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Don’t know what I don’t know…diagnosed 5/13/25
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!
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Sorry to read that you are joining our club. It will help others to provide you better treatment guidance if they know your age and general health condition in addition to what you described above.
Thank you! Edited my post to include this info.
Sorry to hear about your diagnosis. I think the next steps will depend on your PSMA PET. If the cancer has not spread, you will want to do a Decipher test. First line treatment will likely be radiation with a Bracytherapy boost.
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2 ReactionsMy first question when I read posts like yours is to ask how many years of PSA tests have you documented? The more history of PSA tests you have the better, because the trend of that PSA history tells a lot regarding cancer aggressiveness.
Some things to look for:
> You may not be able to lift weights, but there are types of resistance training that are geared towards cardiac patients. You’ll need that when the side-effects of the Orgovyx begin to kick in.
> You mentioned PNI; Does your MRI report mention anything about extracapsular extensions or seminal vesicle invasion?
> With your Gleason 5+4=9 (very high risk), did the biopsy report mention anything about cribriform pattern or intraductal carcinoma?
The PSMA PET scan will identity any detectable lesions, and will assign each a SUVmax score. You should know where those lesions are and what the SUVmax scores are. The SUVmax scores relate to the aggressiveness of the disease at those locations.
> The Orgovyx has two purposes: (1) to shrink the prostate to help with BPH; (2) in preparation for radiation therapy (since you’re not a surgery candidate). Have you discussed radiation treatment options with your doctor?
> Don’t start the Orgovyx until after the PSMA PET scan. There’s a direct relationship between PSA levels and PSMA sensitivity.
I have found it helpful not to overload the doctor with too many questions at once. Ask a few (up to a dozen or so) at one visit, then more at the next, etc.
Treatments today are incredible. The results of your PSMA PET scans will be key in determining next steps.
You’ll be fine.
(At 65y, with a localized 7(4+3) and PSA of 7.976, I had 28 sessions of proton radiation + 6 months of Eligard + SpaceOAR Vue. PSA now hovers between 0.35-0.55. Most recent PSA was 0.476.)
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4 ReactionsBest of luck with all that. You're dealing with a lot.
Thank you!
A couple of thoughts.
First, if you're walking 3-4 miles/day, you are not "mostly sedentary." Please try to keep up this level of activity. It will get more difficult with the Orgovyx, but it will pay off - in minimizing side effects of the drug and also in maintaining your general health.
Please slap your cardiologist up-side the head and ask him/her if you're not supposed to lift weights, what sort of resistance training SHOULD you be doing, because this is pretty important for your overall health.
Best of luck with your prostate cancer journey. No easy answers, but there is a way forward.
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1 ReactionThank 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!
Thanks!
Thank you! As indicated by my urologist at our last visit, I'm sure cardiology visits will increase to monitor cardiac function throughout this treatment process since most of the treatment options have possible cardiac side effects. I'll nail down what I can and can't do at the next one.