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Tulsa Pro - share your experiences
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.
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Well I don't want to get too personal, but I have had multiple cancer. On one the kind of radiation damage I got started 6 months later, xerostomia, loss of salvary gland capability, as a consequence many dental problems. You got 6 months left? I mean it can start anytime, don't think it won't. And oh, by the way, they never told me a thing about it or prepare me in any way, and medical insurance won't cover this kind of problem.
Thanks . I will take your comments under consideration .
I am conversing and having regular lunch appointments with an associate who had the 5 Session SBRT plus ADT almost 1 year ago . His only comment so far . He still feels tired occasionally . Otherwise he ould have the procedure again .
No ADT for me if I can avoid it . Sounds worse than the cancer .
I am new to the group and am considering Tulsa Treatment. I have intermediate risk cancer that is located on the right side of my prostate. I have a 100C size prostate and am being told that at the York Pa. facility that does the procedure they can only treat up to 85c. Has anyone here had a large prostate treated with Tulsa and where did you have it done?
There are all kinds of limits places put on it. Dr Scionti will do yours most likely, but he goes from urethra to edge has to be less than 30 mm, ideally 25 or less. If it is 30 he might do some shrinking on yours first.
Some places doing studies limit to 3+4, though they don't look at volume of 4 so kind of contradictory. Mayo limits it to that I think and size too I think but they didn't have the machine when I was there so I am not 100% sure. Other places are giving a size limitation up to some number, but better places using distance from urethra to edge. The reason they want size limits (or distance from urethra to edge) is they need to take the temperature up for so many minutes as monitored while in MRI using the latest MRI thermometry techniques, but you should still qualify most places. The bigger the size the harder to take temperature up to full kill temps. You will have to call around, but you should qualify for Dr Scionti and others I am sure.
https://tulsaprocedure.com/find-a-tulsa-pro-center/
I will add, some places might be from urethra to furthest edge of lesion in the prostate instead of edge of prostate.
Thank you for your quick reply. I am going to complete the paperwork for the York facility and see what the Doctor says and go from there. I don't have an issue traveling if that is what it takes. My Prolaris came back with a recommendation of both Hormone therapy and Radiation and I don't want to do that. If I were going to do radiation it would be Proton and I may do PAE to shrink my prostate first so it is easier all the way around. What I found confusing is they state Tulsa is a BPH treatment as well as cancer so why they can't do both is startling. Did your prostate shrink in size after the treatment?
Definitely with Scionti it is a 2 for 1 treatment, if some place says they would do one or the other it is about somebodies training probably. Somebody might not have the training to do the cancer part officially or something, could by about what they are board certified in, or Tulsa training, or any other aspect like that. I have not had my 1 year MRI for a size but I should have lost about 60 to 75% of size, though keep in mind the same forces that cause BPH can still be in place. Scionti is in an easy and nice place to travel to, outside hurricane season.
I'm not sure about the size issue, but you should check with Busch Center in Alpharetta, GA (Atlanta suburb). Joe Busch is one of the most experienced with Tulsa treatment.
In October of this year I had the TULSA-PRO procedure done at Mayo Rochester by Dr. David Woodrum. My prostate was approximately 100cc. Dr. Woodrum wasn't certain due to the size of my prostate and the location of my lesion (anterior transition zone) whether the probe could reach it effectively. Seems it has a 6mm maximum distance it can transmit the HIFU signal. My outer distance was 5.9mm. But he said the probe tended to tilt in my favor once inserted and in place. He said in real time if he could not use HIFU he would switch to cryotherapy to freeze the lesion. Both procedures would be MRI guided, in-bore in real time, which to my way of understanding provides a degree of precision most ultrasound guided focal therapy treatment modes do not provide. So I was OK with his assessment. Either TULSA-PRO or cryo were fine by me. To my good fortune he was able to use TULSA-PRO. There is one other step in this process I wasn't aware of until the day before my procedure when Dr. Woodrum ordered a CT Scan of my pelvic region. Its purpose was to determine if there calcium deposits inside my prostate. Calcium deposits deflect the HIFU waveforms and make treatment with this technology problematic and its use not possible, as areas of the lesion cannot be properly heated as a result. Again to my good fortune, I had one small deposit but located far away from the region of interest. I also talked with Dr. Woodrum about doing something about the size of my prostate. As we both know 100cc is a large prostate, especially for me as I'm a small framed man. As part of this procedure he took very wide margins and ablated approximately 60cc of my prostate. So my hope is after all the healing is complete, I'll have a functioning prostate that is about 40cc, the appropriate size for a man my age, 77. I'm one month into the healing. I had a fair amount of edema in my pubic region and scrotum for the first couple of weeks, which has now subsided. My urine stream is reasonably good. My only real symptom at this time is frequency of urination is higher than normal, amount urinated is lower than normal, and urge to urinate when my body says so is pretty strong. Hopefully that will correct itself in the coming months. Hope this is helpful to you.
Here is a link from someone who had Tulsa Pro for 100 cc prostate done at Mayo Clinic in Rochester:
https://connect.mayoclinic.org/discussion/tulsa-pro-experience-mayo-clinic-mn-july-2024/?pg=4#parent-comment-1113832-72db5c
That frequency and urge should get better. When I was at your stage I had the same thing. When I had to go, I had maybe two minutes or it was coming out. I carried a portable urinal with me in my car. I am now at four months out and everything is back to normal. It was really pretty much back to normal at two months.
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