Considering Tulsa Pro or Proton radiation (full gland)

Posted by jaygk @jaygk, Apr 23 8:04am

I was diagnosed with stage two prostate cancer a year ago. Biopsy showed 11 cores of 3+3 and one core of 3+4 )less than 5% of 4). Bilateral No perineural invasion . That biopsy was an ultrasound. Decipher of 0.32. So I went on Active surveillance.

I had a repeat biopsy This year.
It was an MRI guided biopsy (not sure why I didn’t get an MRI guided biopsy last year ??) and I had an additional core of 3+4 (35% of 4) and the urologist re-sampled one of the tumors and it came back 3+5 (but less than 5% of the 5). On this biopsy I also had perineural invasion. No cribaform. I am sending the 3+5=8 for another decipher test

I’m afraid that my cancer didn’t grow in that year, but it was due to the better sampling of the MRI guided biopsy.

PET scan showed no escape

ED an incontinence is very important to me.

I had a consult at a newer Tulsa pro site and they stated that since I needed a whole gland ablation that I was not an ideal candidate due to the possibility of recurrence in 2 to 3 years. I like the advantage of Tulsa pro gives with reduced side effects and the availability of further treatment, including another Tulsa Pro procedure or radiation.

I am considering getting a second opinion from the Texas Prostate Institute, which is a higher volume Tulsa Pro site

I am also considering proton radiation consults at the university of Cincinnati . (I think they use a Varian machine with gantry) at the University of Cincinnati. I am leaning towards the proton radiation and the 28 sessions to reduce effect on the rectum and bladder and other organs . I have severe diverticulosis and generate many polyps during each colonoscopy. The downside of radiation seems to be in 2 to 3 years some of the same side effects start to appear as surgery.

I just read about getting the Prostox test for sensitivity of radiation

My questions
1) is it worth it to get a second opinion from the Texas prostate Institute on full gland ablation by Tulsa pro or is it too risky?
2) I’m considering 28 sessions of proton therapy. What is your opinion of that for my cancer
3) and is it worthwhile for me to get the Prostox test for radiation sensitivity?
4) any other advice?

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stldadof4 | @stldadof4 | 3 days ago

In reply to @jaygk "@toolbelt thanks so much. I am 66 years old. Which is probably why the consult didn’t..." + (show)

@jaygk I just had a TULSA consult from the one group that does it here in St. Louis. They’ve conducted about 70 procedures, which honestly didn’t sound like a lot to me. I’m 58 (so on the younger side for all of this) and G7 (3+4) but with some cribiform and cores with around 50% 4. I’m intermediate risk, but one urologist considered me unfavorable. Most docs seem to think I’m right in the middle of favorable and unfavorable because of the cribiform and amount of 4. PSMA PET did not show any spread. My PC is primarily on the left side, but there is also some on the right, so I would need whole gland treatment.

The TULSA doc said they would be willing to treat me, if I understood the risk of recurrence. I believe that was primarily because of the need to treat the whole gland and my relatively young age (it’s nice to be considered young somewhere!). It sounded like he would be more optimistic about TULSA for me if I were older since the data only goes back a few years.

I’m not sure, but am guessing that’s why Medicare readily covers TULSA (older patient population), but private insurance is iffy (generally younger patients).

Needless to say, that didn’t give me the warm fuzzies I was looking for, so I’ve ruled out TULSA for myself. Still glad I did the consult, and appreciate the doc’s candor. I’m waiting on prostox results ordered by a RO at Siteman Cancer Center, but am leaning towards SBRT, or possibly brachy.

Hope this helps. All the best to you in this very confusing decision-making process.

pioneer | @pioneer | 3 days ago

In reply to @stldadof4 "@jaygk I just had a TULSA consult from the one group that does it here in..." + (show)

@stldadof4

Hello,

I’m one of the 70 cases preformed in St. Louis if you’re talking about SLU/SSM. I got the same caution about cancer possibly returning. My thinking was if it returns I’ll look into radiation or surgery, but the relative ease of TULSA PRO made it a no brainer in my mind. I’m 69 so there was no issue with coverage from my insurance company. In fact, to my surprise, the procedure did not require pre approval.

I had a G7 (4+3), cribform and 17 out of 20 samples from my prostate had cancer. The cancer had started to encroach into my bladder space, but the prostate sac was still intact. I had planned to undergo radiation with a previous doctor, but found TULSA PRO a week before the placement of gold seeds in my prostate for radiation treatments.

Good luck with your decision.

heavyphil | @heavyphil | 2 days ago

In reply to @pioneer "@stldadof4 Hello, I’m one of the 70 cases preformed in St. Louis if you’re talking about..." + (show)

@pioneer And how did treatment go? How long ago was it done? Thanks!
Phil

pioneer | @pioneer | 2 days ago

In reply to @heavyphil "@pioneer And how did treatment go? How long ago was it done? Thanks! Phil" + (show)

@heavyphil
This is my response to treatment from a thread called Going for TULSA PRO. I some times call TULSA PRO surgery in this response, but it is definitely not surgery as there were no cuts, stitches or significant down time.

Well folks, 23 April was my big day for the TULSA PRO surgery. I had a full gland ablation. I decided to use the St. Louis University Care group which is partnered with the Sisters of St. Mary (SSM) Health hospital group. Dr. Sameer Siddiqui who is the Chair of Surgery, Chief of Urology and an Associate Professor was my surgeon. We were told that everything went well. All of the doctors, nurses and staff members were professional, competent and cordial.

We arrived at 5:30 AM and departed around 12:30PM. I think the pre/post activity, as well as the recovery, took more time than the actual procedure. As the surgery requires sedation the only pain encountered was the installation of the IV in my arm.

The only issue I have post surgery is the predicted soreness of my penis tip where the catheter enters. It’s not too bad and seems to dissipate with over the counter pain meds. They gave me a prescription for some heavy duty pain meds, but at this point I have no plans to use them.

I am overjoyed with the outcome. However, the real results won’t be known for three months when the PSA numbers start to show up. I am also blessed TULSA PRO is now an insurance covered procedure. For all the bad press United Healthcare has received they came through for my procedure. My total out of pocket cost was around $335.00. I’m 69 so Medicare is in the mix as well.

I am telling everyone I know that TULSA PRO should be on their radar when considering prostate cancer treatments. I was within three weeks of starting radiation treatments with a different urologist and something told me to research alternatives. All I can say is that some prayers do get answered.

jcf58 | @jcf58 | 1 day ago

Will be interested in tracking your progress. I was 65 and also was 4+3 with cribriform when I did my Tulsa in July 2024. I only had 30% of prostate ablated. At this point still no sign of cancer after 7 PSA tests and 3 MRIs.

K. J. HOLZ | @kjholz | 1 day ago

In reply to @pioneer "@heavyphil This is my response to treatment from a thread called Going for TULSA PRO. I..." + (show)

@pioneer Hi pioneer. So happy that you are "overjoyed with the outcome" and that "TULSA PRO is now an insurance covered procedure". Here's hoping you'll be happy and relieved by your 3-month PSA test.

My husband is currently getting his PSA test and his procedure was just over a month ago. *Hark* he's just returned....

Best wishes and cheers!

Cheers.

pioneer | @pioneer | 1 day ago

In reply to @kjholz "@pioneer Hi pioneer. So happy that you are "overjoyed with the outcome" and that "TULSA PRO..." + (show)

@kjholz

Great question. The short answer is yes. This is the text from the Operative report I received after my procedure.

“Care was taken to identify critical structures including the external and internal sphincters, neurovascular bundles, ejaculatory ducts, seminal vesicles, rectal wall, bladder wall, and pubic symphysis were identified and considered in the delineating of the intended ablation volume.”

K. J. HOLZ | @kjholz | 1 day ago

In reply to @pioneer "@kjholz Great question. The short answer is yes. This is the text from the Operative report..." + (show)

@pioneer Hi again.

Great question. The short answer is yes. This is the text from the Operative report I received after my procedure.

“Care was taken to identify critical structures including the external and internal sphincters, neurovascular bundles, ejaculatory ducts, seminal vesicles...."

That's what we had too. So.... onwards and 🤞

jaygk | @jaygk | 1 day ago

In reply to @stldadof4 "@jaygk I just had a TULSA consult from the one group that does it here in..." + (show)

@stldadof4 that sounds very similar to my experiences at Kettering for Tulsa.

I wasn’t sure if it was my whole gland or my less than 5% Gleason 5 that made me unfavorable. I think they would do the treatment if I insisted …. but they felt I would be back in 2 to 3 years to be retreated.
I received my decipher test back and got a 0.19 which I am excited about.
I’m sending my Gleeson five off to Dr. Epstein for a second opinion.
If my 5 is downgraded to 4 I will probably skip the hormone therapy based on that fact, and my favorable Decipher score
I just sent my Prostox off to see if I’m sensitive to radiation.
If I’m not sensitive, I’m looking at 28 IMRT treatments at the university of Cincinnati
28 is a lot but the radiologist oncologist mentioned that the SBRT can be somewhat of a roller coaster and I am only 20 miles away from the site
I’ve never been through anything in my life that was so difficult to decide.
So many options and so many side effects.
I hope I can be confident in my decision and not second-guess myself after treatment begins
I have requested the spacer and the gold markers