44-yr-old prostate cancer patient seeking advice, thoughts, etc.

Hello all,

I’ve just been thrown into this scary world recently. I wanted to share my story and see what advice, wisdom, anecdotes, thoughts, etc. you all might have.

The Basics:
44 years old living in Salt Lake City.
Diagnosed with prostate cancer November 26, 2024.
Fairly large tumor (1.7 x 2.1 cm) in the anterior right transition zone.
Slight bulging of the prostate margin anteriorly, indicating extra capsular abutment or extension (my nomograms indicate a 66% chance of prostate-confined disease)
Gleason 7 (3+4) = Grade Group 2
Total percentage of pattern 4: 10%
PSMA PET Scan: no sign of metastatic spread and no sign of lymph node involvement.
PSA: 4.8
Free PSA: 0.3
PSA, Percent Free: 6%
Decipher score: 0.15 (low risk)
No other genetic abnormalities found (like BRCA1, BRCA2, or other predispositions to cancer

I’m currently scheduled for surgery on March 4. However, I’m still exploring all options and seeking multiple opinions.

Background:
I’m frustrated with the journey I’ve been on. In 2019, I had an acute prostate infection. I was treated with antibiotics and the infection cleared up. However, troubling urinary symptoms remained. These were primarily weak urine stream, urgency, and other minor symptoms similar to what someone with chronic pelvic plain syndrome would experience.

My doctor referred me to a urologist. At first, he suspected the infection never went away completely. I did another round of antibiotics. My symptoms ebbed and flowed over two years. My urologist eventually began to suspect cancer because of my symptoms and my slightly elevated PSA level. I had a transperineal prostate biopsy in September 2021. EVERYTHING CAME BACK BENIGN. I was enormously relieved. Around the same time, I moved to Utah.

It took me a while to establish care with a new urologist. He believed I had lingering inflammation from prostatitis and that I should try pelvic floor physical therapy. I gave that a try, but life gets in the way and I just sort of put up with my main symptoms of weak urinary stream and urgency. I went back a year later and he had a completely different diagnosis. He said I had an enlarged prostate. My prostate is slightly enlarged for someone my age, but not overly large. It measures 35cc.

I wasn’t happy with his change in diagnoses, so I found another urologist at the University of Utah. He and and a colleague first wondered if I was having trouble with mast cells and auto immune issues. I seemed to fit the profile of a man with chronic non-bacterial prostatitis. We tried some medications and tests. Finally, in October of 2024, I got a mpMRI 3T. It showed a PI-RADS 5 lesion. A month later, I received an MRI-guided targeted biopsy. That’s when cancer was confirmed.

I should note, there are also extensive calcifications and evidence of chronic prostatitis elsewhere in the gland. I have both cancer and prostatitis. It’s unclear if it’s the cancer or the prostatitis (or both) causing my main urinary issues like weak stream.

It’s been a whirlwind. From being investigated for possible cancer and being found clean…to suddenly having a fairly large tumor three years later.

I do have a family history. My dad, and two of his brothers, had it. Two were diagnosed in their 70s. One was diagnosed in his 50s. All are still alive and it doesn’t seem prostate cancer will be what kills them.

I’m more calm now than I was when my MRI first indicated a high chance of cancer. My PSMA PET scan calmed me a lot. But I’m still worried about the potential for slight extraprostatic spread, as indicated by the bulge.

I do trust the team at Huntsman Cancer Institute, where I’m being treated. My surgeon is Dr. Christopher Dechet. He is, understandably, wanting me to do surgery. I met with the radiology urologic oncologists as well. They also think surgery is a better option for me. They cite my age, and the fact that I already have urinary issues, as a reason to avoid radiation. They believe I could be severely affected by radiology-linked urinary problems if I went that route.

I traveled to the Mayo Clinic last week for some other opinions. A surgeon gave me some assurances about my Utah surgeon saying, “if you do surgery, you don’t need me and you don’t need to come here. I know your Utah surgeon. We studied together and he’s very gifted. You’re in good hands.”

I also met with a focal therapy specialist. He said the only focal therapy he would recommend for me is cryotherapy. He said some of the reviews for cryotherapy are mixed and he wanted to make sure I understood that they do MRI-guided cryotherapy at Mayo, which is much, much better than other kinds. However, he also said I’m not an “ideal” candidate. But I’m not a “bad” one either. He just thinks there’s more of a chance of prostate cancer becoming a “chronic condition” for me given my age. He is presenting my case to the Mayo tumor board to see what colleagues say. I haven’t heard back yet.

I’m also traveling to UCLA Health in early February for additional opinions.

Like nearly all guys, I want the best chance of curing the cancer and preserving sexual function. I like my sex life. It’s robust. The possibilities fill me with dread.

That’s my story. Feel free to ask questions or let me know what you think.