50 and Full of Life. Need advice. TULSA or HIFU or what?

Cxracer, I'll suggest that you contact Wayne Brisbane at UCLA (310) 794-7700 Your can watch his videos https://www.youtube.com/watch. I'm guessing you won't need to ask any questions before they are answered. Best wishes

As you’re deciding on treatments, the goal is to gain some insight into whether there’s something more serious lurking unseen than a vanilla 3+4:

> what is your % Free PSA?

> did you get a 2nd opinion on the biopsy?

> what % is “3” and what % is “4”?

> is there any mention of cribriform pattern, perineural invasion, intraductal carcinoma, extracapsular extension, or seminal vesicle invasion in your MRI or biopsy reports?

> what do your other biomarker (genomic) and genetic (germline) tests show?

> what were your PSMA PET scan results?

(Unless you have some other risk factors, a 3+4 is favorable intermediate. I would ask the Local oncologist why he refers to it as an Unfavorable Intermediate? As favorable intermediate, ADT is not usually recommended.)

Note that a urologist will usually recommend surgery; and a radiation oncologist will usually recommend radiation. Getting a referral to a focal therapist is a very good idea. Also try to get a referral to a medical oncologist. That will get you an independent opinion without a vested leaning towards surgery, radiation, or focal therapy.

Data show that success rates of surgery vs radiation are statistically equivalent, and since the mortality rate of prostate cancer is extremely low, you’ll be around for longer than “as long as possible.”

With focal therapy, I would ask about the size of your lesions they would treat as well as how much additional margin they would have to treat to ensure they get everything. The larger the margins, the more risks of undesirable side-effects.
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As others have mentioned Gleason 3+4 by itself is mild, and your PSA is relatively low, so it's worth getting more testing and scans to see what's up. Are there signs of cancer elsewhere in your body (back and pelvis pain are concerning) on MRI, CT, and/or PSMA-PET scans? Do you have germline genetic mutations like BRCA1/2 that make aggressive spread more likely? Can you get an epigenetic test like "ePSA" to confirm whether your cancer is likely slow moving?

All of these options are less invasive than the biopsy you've already had, and would help increase your (and your medical team's) confidence that either

a) there's no immediate risk, and active surveillance would be appropriate for now, or

b) the cancer is high risk despite the low PSA and Gleason score, so you need to do something more drastic like surgery or radiation.

Personally, I discovered my prostate cancer at age 56 through back pain and increased problems balancing. There wasn't much happening in my prostate (normal size, no detectable tumours), but I already had a huge lesion on my middle spine that eventually left me paraplegic for a couple of years, despite rapid emergency intervention.

Prostate cancer that starts young is more likely to be aggressive than the kind that develops slowly in old age, but that isn't necessarily the case for you. That's why it's really a good idea to push for more tests, if you haven't already had them.

Zero prostate enlargement was noticed in the CT scan. The MRI showed two small lesions, (one each side), and zero sign that possible cancer was present anywhere else in my pelvis, (i.e. lymph glands). I have not had a PET scan yet.

Hopefully this all makes more sense to you all, than it does to me.

Biopsy results:
Sample / Gleason Score / Grade Group / % of Tissue
left base / 3+3 / 1 / 60%
left mid / 3+3 / 1 / 60%
left apex / 3+3 / 1 / 90%
left lateral base / 3+3 / 1 / 60%
left lateral apex / 3+4 / 4 & 2 / 100%
right base / 3+3 / 1 / 05%
right mid / 3+3 / 1 / 40%
right apex / 3+3 / 1 / 60%
right lateral base / 3+4 / 4 & 2 / 90%
right lateral mid / 3+3 / 1 / 25%
right lateral apex / ?? / ?? / ??%

Decipher Prostate Biopsy Genomic Classifier:
Score: 0.11
Clinical Stage: T1c
Decipher genomic risk group is: LOW
Interpretation: Clinical studies have shown that patients with NCCN unfavorable intermediate risk prostate cancer and Decipher low risk scores have less aggressive tumor biology.
* These patients may have excellent oncologic outcomes when treated with standard therapy
* When treated with radiation alone (without concurrent hormone therapy), they had favorable outcomes.
* The Decipher score is determined solely by genomic characteristics of the tumor, independent of the NCCN risk category. No other clinical or pathologic parameters factor into the score.
10-Year Risk of Metastasis: This patient is 01.5% Risk
5-Year: 0.6%
15-Year: 01.2% Risk of Prostatic Cancer Mortality with Standard Therapy
At RP: 06.0% Risk of Adverse Pathology

Please let me know if I should track down additional info. As far as I know, this is about all I have available to me at this point.

When I had my MRI, I actually had 2. One for my pelvis, and one for my lower spine, (to help diagnose back pain). Pelvic MRI showed 2 small lesions on my prostate, but nothing else abnormal. Spine MRI showed minimal arthritis, but nothing else abnormal.

I believe my pelvic and low back pain can be attributed to the pudendal nerve, (impacted by biking and prostate irritation), and muscle imbalances that I've developed from sitting too much for my job, and becoming addicted to biking over the past couple years. (I'm working on correcting possible muscle imbalances and releasing my psoas and iliacus muscles on a regular basis, and spending minimal time on the bike saddle after taking 4 months off.)

@cxracer Even if I were a medical professional (I'm not), I wouldn't try to interpret your test results here. But I will suggest asking your care team what other non-invasive tests you can do to clarify the picture and build up data so that you can make the best possible decision together. As I mentioned, some possibilities are

- germline genetic testing (do you have mutations like BRCA1/2?)
- epigenetic testing
- advanced bloodwork (some results, like ALP and to a lesser extent, LDH, can hint at whether your bones are in distress somewhere)
- additional radiology scans, like a bone scan and/or PSMA-PET (but note that while PSMA-PET is more sensitive than CT or a bone scan, it's also a bit notorious for false positives)

No single test is conclusive, but the more information your oncology team is able to collect, the better your personal situation will come into focus.

A good place to learn a lot more about our disease so that you can have informed discussions with your care team is the book "Dr Patrick Walsh's Guide to Surviving Prostate Cancer", though even that is already 3 years old, and things are moving fast in the field:
https://www.amazon.com/Patrick-Walshs-Surviving-Prostate-Cancer-dp-1538726866/dp/1538726866

My urologist told me that my prostate cancer is slow progressing non-aggressive, and that I have time to determine what to do, but he did recommend that I do NOT only perform active surveillance, (I believe mostly due to my relatively young age and health / fitness level.

You really need to get genetic testing to find out if that is related to your having cancer so young. I got it at 62 and I have BRCA2. It’s a major factor in why I had it so young, My brother didn’t get it until 77. That’s after my father died from it, which doubles the chance of us getting it. I’ve run into a few people who have gotten it in their 40s and they’ve had either BRCA or ATM.

Have you had hereditary genetic testing? Has it been offered to you by a doctor? You can get it done free with the below link, if you live in the United States. Do not check the box that you want your doctor involved or they won’t send you the kit until they get in contact with your doctor. It takes about three weeks to get the results and then a genetic counselor will call you.
http://Prostatecancerpromise.org

@jeffmarc Thanks for this! I'll step through it today. My dad had his PSA spike in his mid to late 50's and had his prostate removed, which caused permanent ED for him, but eradicated the cancer. Nobody has even mentioned genetic testing, outside of the additional expensive molecular "Genomic" test that my urologist sent my biopsy core samples in for, (I posted the results above).

Well this isn't good:

Thank you for your interest.
Based on your responses, you do not qualify to participate in the PROMISE registry at this time. If you believe this is an error, please contact the PROMISE Team at pcctcpromise.

Learn more about the PROMISE registry at prostatecancerpromise.

@cxracer
I’ve never heard of somebody having this response before. I can only imagine it’s because you did not say you had prostate cancer at some point. Did they ask about family history of cancer?

I know this free test is going to stop soon, but I’m not sure when. It seems people are still able to apply for it.

This test is not similar in any way to the decipher test.

You can ask your doctor to have one of these tests done. It is covered by insurance..