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Discussion50 and Full of Life. Need advice. TULSA or HIFU or what?
Prostate Cancer | Last Active: May 12 8:48am | Replies (67)Comment receiving replies
Replies to "Zero prostate enlargement was noticed in the CT scan. The MRI showed two small lesions, (one..."
@cxracer It looks like your cancer is low grade but high volume, affecting almost your entire prostate. Focal therapy might not be an option, but you could ask about TULSA for the whole gland. I was told when inquiring about that option that, like radiation, it makes surgery at a later date, if necessary, very complicated. So, there is a risk.
If your decision comes down to radiation vs. surgery, make sure to ask your prospective surgeon if he believes that nerve sparing will be possible. If not, your decision will probably tilt towards radiation.
I was diagnosed one year ago at age 51, my partner is 35. I also tried to avoid ED any possible way but opted for surgery in the end because TULSA or Brachy monotherapy seemed not to provide sufficient cancer control. My biopsy was 4+4 but I was downgraded to 3+4 in my pathology, with 10-20% total cancer volume and 20-30% pattern 4. Decipher 0.2. Biopsies can be very unreliable, which in your case may mean that, given the high overall volume, there may be more pattern 4 than what your biopsy revealed. I would also discuss that with your care team.
I had surgery last June. Incontinence resolved quickly, though more urgency is likely permanent. I still have complete ED and will start injections soon. I took me some time to accept these risk before deciding on treatment but once I got there I felt good about my choice. Worst case scenario is a penile implant.
@cxracer That is very low risk per Decipher.
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@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