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

Posted by cxracer @cxracer, Jan 12 8:46am

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.

Interested in more discussions like this? Go to the Prostate Cancer Support Group.

....consider getting DECIPHER (genetic) and ARTERRA (Biopsy AI comparison) for context for now and in the near future.

...in radiotherapy group selection: [ Get a ProsTOX test (MiraDx) it screens for delayed Urinary tract Symptoms
EBRT: all seem to be equi-effective
SBRT (usually about 5 visits)
Moderate IMRT (5 weeks)
Standard IMRT (7 weeks)

(unpromoted is the 20 minute procedure below)

ISRT (Interstitial radiotherapy) ('Seeds'/ 'Low' dose RT / LD brachytherapy the latter treatment rates are increasing in Europe because it provides the optimal dose of radiation when you factor in time. Seeds work for weeks to months consider looking up Brachytherapy 101 on a YOU-TUBE video produced by the PCRI.org,

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Profile picture for cxracer @cxracer

@topf My local urologist stated "nerve sparing is possible ...", and that is NOT comforting to me in the slightest. Not probable or highly likely. Possible. I've talked to enough men, including my father, to know urologists don't care if they do or don't spare your nerve bundles. Eradicating the cancer by removing the prostate is their only priority. And I get it, to a point. We need to be our own best advocates, like always. I will say though, prior setting up my consult with Mayo, I had flip flopped from choosing EBRT radiation and hormone therapy to surgery, based on the likelihood I will develop additional cancer in my pelvic region within my lifetime, and I still may opt for surgery in the end.

Thank you for sharing. I'll cross the ED bridge if / when I come to it, but dang I sure do want to avoid it at all costs, if I have other options available, without taking future options off the table.

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@cxracer

I think that your surgeon is just honest and it is commendable.

My husband had RP and his surgeon also told him that until he opens him and looks through glasses (that are actually like a microscope), he can only say things that are probable but that in some cases surgeon discovers situation that is worse than scans indicate.

It is misconception that MRI and PSMA tell all. Also, biopsy is about half time correct. The other 50% is either upgraded or downgraded. Only when gland is out and examined in detail the true situation is revealed.

So, your surgeon can not say with 100% certainty that he will not discover some cancer effecting nerves and finding it necessary to remove part of them. Advanced imaging in robotic approaches (such as the Da Vinci system) allows surgeons to identify subtle visual cues like tissue color changes and vascular patterns that indicate if cancer has spread outside the prostate capsule.

All that said - my husband choose RP since both his surgeon and his RO advised him to do so. He recovered his full continence 4 mos post op and ED is recovering also and we did not even try Viagra (he is on Cialis for recovery purposes) .

Also, there is a set of patients that has urinary retention problems, scaring and even incontinence after RT. RT can cause fecal incontinence, proctitis etc. There is just no perfect treatment with no possible side effects now or later , unfortunately.

Yes, go for a second opinion or even third until you are sure of what you wish to do and than don't look back since the most important thing is - to DO something.

Wishing you the best of luck with whatever treatment you choose.

PS: If you decide to choose RP, do it in a Center of Excellence with the best possible surgeon you can find- one that performed thousands of those surgeries and ask him about his record - how many of HIS patients had ED and permanent incontinence after surgery. Also don't forget that recovery also depends of a patient ! Age, status of ED and continence before surgery, physical fitness, obesity, comorbidities, and willingness of a patient to do pelvic floor exercises and penile rehabilitation protocols.

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I had TULSA last Friday, a hemi-ablation. I thought TULSA was good/maybe better than HIFU because you are in the bore of an MRI for the procedure. They target the cancer from the inside out. I’ve had no meds, feel great and get catheter out after 6 days. We’ll see how the ED and incontinence works out but I’m optimistic about both based on doctor comments. My understanding is that Profound Medical (the TULSA manufacturer) has a rep or two attend the procedures too. That gave me added confidence. All the best to you.

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I was diagnosed at 7.1 PSA and had two positive biopsy cores with Gleeson 3+4 and 4+3 but no lesions or suspicious areas detected on my MRI.

I chose a three-pronged approach of 6 months Orgovyx ADT + 25 IMRT sessions + one high dose brachytherapy "boost". I can report the treatment was very tolerable and my PSA six months post treatment is .11. Testosterone still recovering but hovering below normal at around 159.

I have no lingering side effects (incontinence, impotence, etc. ) and I feel almost back to my normal pre-treatment self. Even my urinary frequency has returned to normal.

Given the odds I researched on surgical removal there was no way I wanted RP. I am very happy with my treatment and hope my PSA stays low forever.

Good luck with your decision>

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Profile picture for llhuscg @llhuscg

I had TULSA last Friday, a hemi-ablation. I thought TULSA was good/maybe better than HIFU because you are in the bore of an MRI for the procedure. They target the cancer from the inside out. I’ve had no meds, feel great and get catheter out after 6 days. We’ll see how the ED and incontinence works out but I’m optimistic about both based on doctor comments. My understanding is that Profound Medical (the TULSA manufacturer) has a rep or two attend the procedures too. That gave me added confidence. All the best to you.

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@llhuscg Speaking about HIFU & TULSA, I received this email yesterday:

“Anthem Blue Cross, the largest for-profit member of the Blue Cross Blue Shield Association (serving more than 40 million members), recently reviewed its medical policy on High Intensity Focused Ultrasound (HIFU) for localized prostate cancer. Anthem has determined that HIFU treatment is “not medically necessary,” despite support from the urologic oncology community. Both Medicare and other major commercial plans such as United Healthcare are already covering the HIFU procedure.
The non-coverage policy from Anthem represents a major step back that limits patient access to a non-invasive treatment option and undermines individualized care based on the patient-physician shared decision-making principle.

While many of your members may not have had direct experience with HIFU, this effort represents a meaningful opportunity to advocate for broader coverage and access, making this treatment option available to more men across the United States.“

So, just to be sure that I wasn’t being scammed, I checked on Anthem’s web site about this. This from Anthem’s website, effective last week: https://www.anthem.com/medpolicies/abc/active/gl_pw_d091799.html

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Profile picture for brianjarvis @brianjarvis

@llhuscg Speaking about HIFU & TULSA, I received this email yesterday:

“Anthem Blue Cross, the largest for-profit member of the Blue Cross Blue Shield Association (serving more than 40 million members), recently reviewed its medical policy on High Intensity Focused Ultrasound (HIFU) for localized prostate cancer. Anthem has determined that HIFU treatment is “not medically necessary,” despite support from the urologic oncology community. Both Medicare and other major commercial plans such as United Healthcare are already covering the HIFU procedure.
The non-coverage policy from Anthem represents a major step back that limits patient access to a non-invasive treatment option and undermines individualized care based on the patient-physician shared decision-making principle.

While many of your members may not have had direct experience with HIFU, this effort represents a meaningful opportunity to advocate for broader coverage and access, making this treatment option available to more men across the United States.“

So, just to be sure that I wasn’t being scammed, I checked on Anthem’s web site about this. This from Anthem’s website, effective last week: https://www.anthem.com/medpolicies/abc/active/gl_pw_d091799.html

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@brianjarvis

HIFU is one of the multiple types of focal therapy. Comments like this may be one reason treatment was stopped.

At the 11/1/2025 PCRI conference the following was said by Matthew R. Cooperberg, MD, MPH

What about focal therapy?
* The energy modality matters much less than the accuracy of the imaging - which is not there yet.
* Overall focal therapy is associated with minor side effects, but high rates of recurrence both in- and out-of-field.
* Focal therapy is not really a replacement for surgery or radiation; it is better considered an adjunct to active surveillance

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Profile picture for brianjarvis @brianjarvis

@llhuscg Speaking about HIFU & TULSA, I received this email yesterday:

“Anthem Blue Cross, the largest for-profit member of the Blue Cross Blue Shield Association (serving more than 40 million members), recently reviewed its medical policy on High Intensity Focused Ultrasound (HIFU) for localized prostate cancer. Anthem has determined that HIFU treatment is “not medically necessary,” despite support from the urologic oncology community. Both Medicare and other major commercial plans such as United Healthcare are already covering the HIFU procedure.
The non-coverage policy from Anthem represents a major step back that limits patient access to a non-invasive treatment option and undermines individualized care based on the patient-physician shared decision-making principle.

While many of your members may not have had direct experience with HIFU, this effort represents a meaningful opportunity to advocate for broader coverage and access, making this treatment option available to more men across the United States.“

So, just to be sure that I wasn’t being scammed, I checked on Anthem’s web site about this. This from Anthem’s website, effective last week: https://www.anthem.com/medpolicies/abc/active/gl_pw_d091799.html

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@brianjarvis WOW - a complete kibosh to TulsaPro.
I was not aware, however, that HIFU was ever used for pain palliation in bone metastasis, were you?
But then again, they are approving its use in THAT case since it probably is never even considered…
Phil

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Profile picture for heavyphil @heavyphil

@brianjarvis WOW - a complete kibosh to TulsaPro.
I was not aware, however, that HIFU was ever used for pain palliation in bone metastasis, were you?
But then again, they are approving its use in THAT case since it probably is never even considered…
Phil

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@heavyphil Late prostate cancer metastasis to bone is typically treated with Xofigo (Radium-223) or Pluvicto (Lutetium-177) if it’s systemic.

I’ve never heard of HIFU being used for that purpose. But, for an isolated bone lesion it makes sense (instead of surgery or SBRT) - HIFU is targeted, non-invasive, & can be repeated if needed.

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Great to see that you are doing a lot of research to decide on your treatment plan. I was five years older than you when I was diagnosed with Gleason 7 (4+3) and had to assess my life goals and treatment options. My highest goal was life for 30+ additional years free of prostate cancer, with continence 2nd and erectile function 3rd.

I ended up deciding on a radical prostatectomy at a center of excellence, Mayo-Rochester. If you want the best possible outcome and least chance for negative side effects (incontinence, ED, infections, etc.), you must go to a center of excellence for the treatment plan you chose. In addition, it is vital to do your research on the surgeon/oncologist/etc. to ensure you have the best possible and most experienced doctor. I did not want the department head, best instructor, or the surgeon who wrote the best books. Rather, because I chose surgery, I wanted the most experienced surgeon, who had done thousands of successful robotically assisted radical prostatectomies. This surgeon was doctor Igor Frank at Mayo-Rochester. What an amazing individual and surgeon. When I first met with him, he did not push surgery but rather wanted to ensure I chose the procedure that best aligned with my situation.
As I said, I was 55 when diagnosed. Also, I was/am very fit, very active, eat healthy, and not overweight - From my research, this does make a difference in outcomes and potential negative side effects. For my situation, there were absolutely no long term side effects . Obviously, immediately after the surgery, there was some incontinence, but this subsided and was tackled over about two months - I kept a pad underneath me at night for several months, but this was more to make me feel comfortable in case unexpected incontinence occurred. Doing all of your post surgery physical therapy is crucial. I did not do professional PT, but rather did my own at home. For myself, I had no erectile disfunction at all. Unwanted night time erections with the catheter were not comfortable, but tolerable.

Good luck with your treatment decision and I pray all goes well for you.

Jim

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Yesterday, I was able to have a phone consultation with Dr Scionti in Sarasota Florida, to discuss Tulsa Pro and HIFU.

It was very easy to work with his practice. Called last week and made arrangements for them to access my medical records.

Dr Scionti reviewed Mri, PSMA, Biopsy, etc.

My smaller prostate size and position of lesion, excluded me from Tulsa Pro. I think not enough distance from Urethra to the lesion.

He said I was a good candidate for HIFU.

I do not know when/how I will undergo treatment(s).

Just wanted to convey, it was a simple process to make phone calls and obtain more information.

Best Wishes

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