Tulsa Pro - my initial treatment experience

Posted by bjroc @bjroc, Nov 28, 2023

I want to thank all for support on my recent prostate cancer treatment, Tulsa pro. I am very thankful to my wife and my daughter who helped out lots with support. I am thankful to Mayo for finally finding the extent of the problem with a transperineal biopsy. I am also very thankful to Dr Scionti in Sarasota for being a true expert for the Tulsa procedure. Tulsa leaves everything intact except for the prostate cancer tissue plus some tissue as a safety margin near it. It goes nowhere near sphincters and nerves. I was very glad to not have any extra prostatic cancer, or cancer in seminal vesicles, ducts, nerves etc. I did have PSMA scan showing this. We will just have to see if everything works out in the long run cancer wise.

What I had cancer wise
Originally in 2021 I had a small spot seen in transition zone. It got some 3+3 more toward back where they could reach via trans rectal biopsy (done at a local university), but they could not reach the anterior where most of it was in 2021. My 2023 Mayo done transperineal biopsy had one needle at the anterior transition zone with all Gleason 4, it was not a big spot (0.2 mm caught in needle). Keep in mind in 2021 further to back it had just Gleason 3. I am not going to get caught up in Gleason scores, I know what was sampled in past, and though one needle had 4 in the front/top of anterior it was just a tiny spot in this tumor and most toward posterior was not hit here in 2023. There was also a small 3+4 on one side seen now in 2023. My PSA headed up steadily during the 2.75 years on surveillance. My final prostate size before any treatment was 110 cc, and final PSA around 16.

What worked on biopsy, and what did not.
2021: Trans rectal in 2021 biopsy did not sample well, missed most of what is in anterior transition zone and one of my problem areas. But since then, I have had plenty of time to read on things like Tulsa pro, radiation types, and so on. So was glad to have the time.
2023: Mayo Transperineally done biopsy caught the problems.

Some things I learned about MRI
What I learned is that, for me at least, diffusion weighted MRI shows very clearly what docs need to see to treat. Regular contrast enhanced MRI left my doctors not that sure, sometimes even confused. Diffusion weighted MRI to me was crystal clear where things were and what needed to be treated. Only Dr Scionti seemed geared up for diffusion weighted MRI. That includes other places I asked for initial consult, and Mayo that I went to for a while – all geared up for contrast enhanced MRI only really seemed like.

Who does new kinds of treatments.
Mayo is top notch for advanced cancers that have spread, but I learned they are just starting out with other new treatments like Tulsa Pro. I liked Mayo’s proton as a possibility, but they have filled many slots for it, and sometimes it is hard to get through insurance from what they said to me. They also do everything under protocols, they have to develop those for these new treatments of any kind since everyone looks at Mayo. So in some ways they are behind a bit, having to do everything with a protocol instead of just looking out for what is best for one individual patient. Thus, I found I had to call around if I wanted anything new. Some places are better than others seemed like to me at calling places. The best I heard from was Dr Scionti in Sarasota.

Before Tulsa for me
Because the size of my prostate was large, and one needle had all Gl 4, we did bicalutamide and dutasteride for several months. They want that temperature up during Tulsa at the top so while I still met the Tulsa size limits we shrunk things a bit to be sure.

Travel
I had to travel to Sarasota, about a 22 hour drive for me. Found a nice Airbnb down there not too far away. I drove since date of coming back was uncertain. I wanted his office to take catheter out, others might fly and self remove catheter I understand, but I was unsure about that. It is good I rented an Airbnb for more than two weeks is all I can say.

Tulsa procedure
Obviously asleep, seemed to go well. They took out about 2/3 of the prostate tissue with the Tulsa pro. The before and after MRI done while asleep clearly shows the tumors on diffusion weighted MRI, and post procedure MRI with contrast show those same areas treated well and no longer there. Woke up with the bladder spasms a real lot, oxybutynin seemed to really help but it was hard to wake up with Foley catheter and the spasms. Next day the spasms were gone, but it was tough to sit. For ten days with Foley catheter, I watched old Dr Who, movies, and obviously just sleeping. A restful period is the best help, not having to do much was important for me at least. Foley catheter for ten days was no fun but it wasn’t as hard as I imagined perhaps.

Post catheter
Was a bit tough, I still had some inflammation perhaps worse than some get, plus there is scar tissue for up to 6 months, so it was hard to pee. Alpha blocker was a must just to pee. Another couple weeks brings me to now at this writing and it is a lot easier to pee. But it was a hard travel back. I suggest stay in an Airbnb for some time post procedure plus give plenty of time after catheter is out.

Future
We will see if this all worked on the cancer over next year or two, and on after that. Hoping for no recurrence of course.

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

@terralhenderson

So, evidently the reduction in swelling, as in your case, can take quite a bit longer then what is stated in some medical articles that I have read. Thanks for the feed back.

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the swelling is minimal in my case, overall so far, I am pleased with my decision to go forward with this procedure

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I haven't had a procedure yet. I'm waiting on Decipher results. I am leaning toward the Tulsa Procedure, so seeing the posts here is very helpful. In consultation with the UCLA Doctor Raman, he said that early Tulsa Procedures were (rarely) sometimes not aggressive enough allowing the cancer to return. Some more recent procedures (not common) were a little too aggressive and caused side effects. Even though sometimes the results weren't perfect, he said that the odds were still better than other procedures. I'm hoping that my Decipher score shows slow growing, non-aggressive cancer that can wait to be treated until after the 1st. of the year when hopefully medicare will cover the procedure in whole. Please keep posting your Tulsa experiences as there are precious few online. Best of luck and thank you.

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@bjroc

Just update everyone my PSA is still persisting and is now at 4 at 6 months post Tulsa, up from 3 at 3 months. I find it concerning, though my PSA before Tulsa was over 16. Doctor not yet concerned. I really had tons of BPH, so hard to say what it is supposed to be due to that. I pray that things are working out is all I can do.

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That is concerning, did you have full gland ablation?
Keep us up to date on your progress. Hoping for the best for you.

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@paulcalif

That is concerning, did you have full gland ablation?
Keep us up to date on your progress. Hoping for the best for you.

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Hi Paul, they ablated about 2/3 to 3/4 or so, they took out a real lot. The goal was to take my formerly 110 cc prostate with some some small (one tiny) cancer spots into a 30 cc or so prostate with no cancer. The docs not worried if my former PSA of 16 bounces around like 3 or 4. That doesn't mean I love that it went up from 3 at 3 months to now 4. Anyway I have to wait so see if the work done has done the job and expect some PSA bouncing around is what I am told.

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@bjroc

Hi Paul, they ablated about 2/3 to 3/4 or so, they took out a real lot. The goal was to take my formerly 110 cc prostate with some some small (one tiny) cancer spots into a 30 cc or so prostate with no cancer. The docs not worried if my former PSA of 16 bounces around like 3 or 4. That doesn't mean I love that it went up from 3 at 3 months to now 4. Anyway I have to wait so see if the work done has done the job and expect some PSA bouncing around is what I am told.

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That sounds encouraging. I spoke to a UCLA radiologist who recommended full ablation for me. He likes and uses "temporary interstitial brachytherapy" where they insert a bunch of radioactive needles temporarily to destroy the prostate. It's like the seed implants but without seeds and is completed in one or 2 sessions. I'm not a big fan of that idea, but he claims great success with it. I have a video appointment set for the 20th. with a UCLA Urologist. We'll see what he has to say. I'm still leaning toward Tulsa, but feel I have time. My Decipher results came back, I have a slow growing version of the cancer. Best of luck with your PSA levels. Keep us updated.

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Thanks so much for the conversation. 75yrs. old. I was diagnosed just 5 wks ago following biopsy. Grade 3 7(4+3) contained. Not interested in surgery, radiation or ADT. Looking closely at TULSA unless convinced otherwise. Hope to have insurance coverage 1/25. Medicare Advantage. 30k is rich for my pocketbook yet may decide to pull the trigger at decision time. So much for dreams of travel......Stay tuned.

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@paulcalif

I haven't had a procedure yet. I'm waiting on Decipher results. I am leaning toward the Tulsa Procedure, so seeing the posts here is very helpful. In consultation with the UCLA Doctor Raman, he said that early Tulsa Procedures were (rarely) sometimes not aggressive enough allowing the cancer to return. Some more recent procedures (not common) were a little too aggressive and caused side effects. Even though sometimes the results weren't perfect, he said that the odds were still better than other procedures. I'm hoping that my Decipher score shows slow growing, non-aggressive cancer that can wait to be treated until after the 1st. of the year when hopefully medicare will cover the procedure in whole. Please keep posting your Tulsa experiences as there are precious few online. Best of luck and thank you.

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I had another MRI at OU medical center and talked to Dr. Stratton. He told me I am a good candidate for the TULSA PRO procedure. I go back in 3 months for active surveillance. We are hoping to have TULSA approved for coverage the first of the year. I offered to get into my IRA to pay for it but the Dr. told me we have time to watch the cancer.

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@bobbygene

I had another MRI at OU medical center and talked to Dr. Stratton. He told me I am a good candidate for the TULSA PRO procedure. I go back in 3 months for active surveillance. We are hoping to have TULSA approved for coverage the first of the year. I offered to get into my IRA to pay for it but the Dr. told me we have time to watch the cancer.

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You have a great sounding doctor, hope it all works out on getting it paid when you have it done, and taking care of the cancer 100%. Let us know how it goes.

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@bjroc

You have a great sounding doctor, hope it all works out on getting it paid when you have it done, and taking care of the cancer 100%. Let us know how it goes.

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Bobbygene, we are in the same boat 🙂

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@paulcalif

Bobbygene, we are in the same boat 🙂

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Having a CT scan requested by TULSA to determine calcium levels. Final step for acceptance of the procedure. Will be completed next week. Headed to Mayo Clinic, MN next week for second opinion. Hopefully they will consider TULSA as viable option and I have time to wait for medicare coverage 1/2025. Stay tuned.

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