50 and Full of Life. Need advice. TULSA or HIFU or what?
We're all here for the same reason, so I'll try to keep my introduction short.
I'm 50, still very young (IMO), full of energy, extremely active, healthy, and have a satisfying and active sex life with my wife. I began chasing increasing pelvic and low back pain in mid-late 2025 that I attributed to bicycle riding and racing. PSA scores of 6.2 and 6.6, followed by CT, MRI and biopsy confirmed Gleason 3+4 cancer, (Favorable Intermediate). Local urologist is a surgeon and recommends surgery / removal. Local oncologist is a radiologist, refers to it as Unfavorable Intermediate, and recommends EBRT and ADT (hormone therapy).
I'm an analyst by trade and don't like either of these options, due to their side effects directly impacting my quality of life, which I hope to be as long as possible.
I'm working with my local urologist and insurance company (BCBS) to provide me with an approved out-of-network referral to Mayo (Rochester), and in the meantime have a Mayo consult scheduled for Jan 15th. I have no idea what treatment options will be recommended, but I pray to God they're better than the two antiquated ones that have been recommended locally.
TULSA looks extremely promising to me, as well as HIFU, and I believe I am a qualified candidate for both.
Are there specific questions you all suggest I ask in my consult? Any other treatment options I should ask about specifically? Do you need me to provide additional specific info about my cancer in order to provide quality feedback?
Thanks in advance, and I've already gleaned a ton of info from reading may of the discussions here.
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@hammer101 Jim, THANK YOU!!! You're the ONLY one that has reached out to me following RP that, to be blunt, hasn't scared the shit out of me. Being young, fit, and healthy, (except for the cancer obviously), it's difficult for me to embrace RP when it's highly probable that my healthy sex life with my wife will be dramatically and permanently altered. Sorry if I crossed a line with sharing to much, but this is near and dear to my heart.
Due to my individual circumstances, Mayo has stated that RP is my only viable option, so it doesn't really matter what my feelings are, this is what I NEED to do. So I'd much rather go in knowing permanent ED is not inevitable.
My highest goal is life for 30+ additional years free of prostate cancer, with erectile function 2nd, and continence 3rd. (I know, it's pretty messed up that continence is 3rd on my list, but it is.)
I'm a fighter, so I'll do whatever I have to do to make a successful recovery.
Thanks again. Sincerely.
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1 Reaction@cxracer That is very low risk per Decipher.
Here's my story about the Irreversible Electroporation (IRE) Nanoknife treatment for prostate cancer.
The discovery of my prostate cancer began when my PSA had risen from the mid twos to over four. My urologist recommended an MRI of my prostate, which resulted in finding two prostate tumors. The tumors were both contained within the prostate. Next was a biopsy. I chose an ultrasound-guided transperineal biopsy because that type of biopsy uses the MRI information as a road map to make sure the suspected areas are tested. My biopsy showed prostate cancer in the tumors.
Based on my Gleason score of 3+4=7 and a Decipher test showing low risk, I was a candidate for active surveillance. However, one of the tumors abutted the edge of the prostate, so I chose to have the tumors treated. I didn’t want to risk the tumor spreading outside the prostate. I was not excited with the possible side effects of removing the prostate or treating it with radiation, so I did research on focal treatments.
Focal treatments focus on treating prostate cancer by attempting to kill the tumor(s) without removal or radiation. These treatments are not for everyone and seem to require that the cancer has not spread beyond the prostate. There are several types of focal treatment such as High-Intensity Focused Ultrasound (HIFU), Transurethral Ultrasound Ablation (TULSA Pro), cryotherapy, Irreversible Electroporation (IRE), and others. I chose the IRE Nanoknife treatment which uses electrical current in an attempt to kill the tumor. This treatment was done at Moffitt Cancer Center in Tampa by Dr. Julio Powsang.
The IRE Nanoknife procedure went well for me. It took about an hour in total, I'm sure a good part of that was the preparation after I was put under. I think the actual procedure took about 30 minutes.
After the procedure, I had some spasms that were quickly relieved by medication. I had a catheter, which I was a bit concerned about. As it turned out, I had it for six days and didn't have any problems with it. I even removed it myself, which was surprisingly painless. I removed it in the shower so any urine that might have leaked out could be taken care of easily.
After removing the catheter, I had leakage and used pads in my underwear for about six weeks. For the first several weeks, there was blood in the urine, but that eventually cleared up. I still have occasional spotty leakage, like when I go to the gym or sneeze or cough. This really hasn't been a problem. Sexual function is the same now as before the treatment.
Three months after the procedure my PSA came down from 4.25 to 2.5. Six months after the procedure the PSA was down to 1.53. A multiparametric MRI (mpMRI) was also done at six months and it showed “post ablation changes of the prostate with no new recurrent tumor in the treatment area and no new suspicious lesions in the prostate." My doctor was very pleased with these results and deferred another prostate biopsy for the time being. Another PSA will be done at the one-year mark.
I'm very pleased with the results so far. Best wishes to all seeking a treatment plan best for them. I would highly recommend that everyone consult with a Cancer Center of Excellence. That type of facility is equipped with the specialists, staff and technology which is particularly effective in treating cancer. In addition to Moffitt Cancer Center, which I highly recommend, I have been a patient of Mayo Clinic for many years and have always received the best of care. Both organizations are Cancer Centers of Excellence.
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5 Reactions@cxracer Mine told me the same.
@cxracer Just curious as to why Mayo said that an RP is your only viable option. If I may ask, why isn't some radiation plan able to work for you?
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2 Reactions@wwsmith I've stated this earlier on in one or two of my responses, but according to my biopsy, cancer is present in like all of my core samples, so my entire prostate is filled with cancer. This pretty much rules out all focal point radiation therapy. TULSA would target he entire prostate, which would have worse side effects than RP. Due to my young age, non-focalized EBRT would probably create issues for me over time, (e.g. bladder, rectal, additional cancer, etc.), plus it would limit my future treatment options if whatever may come up. RP is my best option.
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4 Reactions@cxracer
Your urologist or oncologist said that having full prostate radiation would have worse side affects than having RP?
Most R/Os will treat entire prostate and in my case did so even when MRI and biopsies show cancer only in one section. Why I asked?
R/O with 20 years of doing proton radiation stated in many many cases we are dealing with PC at the cellular level. There is a high chance of only doing radiation only on the biopsied areas that we would miss another area that has cancer and we missed it. It is also why they do the margins.
I see you posted that only one person reached out to you. I remember reading your post but you were stating having RP. I did not have RP so could not help you with my experience with RP as I don't have any. I stick to posting to others on experience if have directly and can pass on to you directly from personal experience.
Good luck on your decision. Have you considered a second opinion even though it is Mayo? Why do I mentioned this. I am a patient at Mayo. My test were done at Mayo. My PCP at Mayo suggested I get a second opinion on diagnosis and treatments as would help with my decisions having two opinions. I followed my PCP advise and got second opinion from UFHPTI and other than some additional tests and different type radiation treatment was the same.
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1 Reaction@cxracer Any primary radiation to the prostate is always done to the whole gland which is what you need when you have wide spread cancer within the prostate. Modern radiation is so precise now that the odds of having long term side effects have gone way down, even for young patients. It would be interesting to hear if the radiation oncologists (RO) from Mayo would agree that RP is best in your case, but maybe you have already explored that. I know that when I was in a similar situation at MD Anderson in Houston, I spoke with surgeon's recommending surgery and RO's saying radiation would work with low odds of long term side effects. Of course, no one knows what would happen for any individual case so all the doctors ultimately just say that the patient has to make the choice.
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1 ReactionMy Details:
* 2025 PSA tests of July 6.2 & August 6.6.
* CT scan showed nothing abnormal.
* MRI showed two PIRAD-4 lesions on prostate. (1 on each side.)
* 11/5/25 biopsy returned Gleason score (3+4=7) with cancer in a majority % of all but 1 of 12 core samples.
* Molecular testing returned 'Decipher Genomic Risk' of 0.11 (Low).
* Dr. Mark Kellerman of Urology Center of Iowa (UCI) recommended RARP.
* Dr. Crosby Rock of John Stoddard Cancer Center (Iowa) recommended 5 to 6 weeks of EBRT with 6 months of ADT (hormone therapy). HDR or LDR Brachytherapy were discouraged, except as a possible 'Boost' to EBRT, which he didn't believe I needed.
I requested an out of network 2nd opinion consult with Mayo Rochester to be submitted to my insurance company from UCI on 12/28/25. They didn't get it submitted until the day of (01/15/26), so I had to transfer $5k to Mayo for them to see me, and my insurance will not reimburse me after the fact.
* 01/15/26 Matthew K. Tollefson, M.D. Urologist of Mayo Rochester (2nd opinion consult) stepped me through all of my therapy options and ruled out each one due to extent of cancer volume in my prostate, my young age,, long-term side effects associated with each, etc., until he recommended the best and only viable option for my individual circumstance as being RARP. He said I have time to decide, but he did recommend that I have surgery within the next 9 to 12 months, and within 2026.
I left the Mayo consult believing that I had been provided with qualified information, and this is where I'm at today. I wish Mayo would have provided me with a 'Panel' of urologists and oncologists, but they didn't, and I don't care to go through the quagmire process again of paying out of pocket for another out of network consult, this time with a Mayo oncologist, just for them to probably recommend EBRT and ADT.
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2 ReactionsMaking a decision on your own as to a type of treatment is stressful. Arm yourself with as much knowledge about each method as possible from unbiased sources. I'm much older but very active and I chose RARP vs radiation to start with a clean removal snd followup with radiation years down the road if it recurred. Plus, who knows what treatments will be available by then. Radiation makes a mess of your prostate and surrounding tissue making future removal more difficult at a high volume center. As for side effects, surgery has 2 main ones that most men recover from. Radiation can cause secual side effects plus bowel issues years down the road. So research with reputable sources - high volume centers that do thousands a year. Use your phone's AI or ChatGPT as a research assistant to find and explain the differences. Best of luck.
PS. I'm 3 months out from my RARP with no pain from my biopsy or surgery at Mayo and I seem to be recovering according to their predictions.
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2 Reactions