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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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I bought the new car before I found out that I had cancer 🙁
Glad to read you are doing well. I'm getting closer to a UCLA consultation. Had my MRI done Monday. I'm still hoping that I'm a candidate for Tulsa. Today I watched a recorded online presentation about "Unfold AI". It's a web based computer program where all of your test results are entered and AI predicts how far your tumors extend so that they can be more accurately targeted. Supposed to be very accurate. UCLA was where development began. I'll start a new post to discuss that. I believe that it requires a Fusion Biopsy (which I didn't have 🙁 and it's not currently covered by medicare but I think that it may soon be. Anyway, again, thanks for sharing your journey with the group, I hope you continue with your positive outcome.
Hi @bjroc ... thanks for your update and candor with your side effects. I am happy for you that they have been satisfactory. You are the first person I have read about who referred to perineum pain. This is a side effect I have experienced as a result of "nerve sparing laparoscopic RP". For me, it has been 7 months, and I still notice a "tenderness" or "pressure sensitivity" along the perineum. I am hoping for a return to serious cycling fairly soon, but am reticent to make this worse (I have purchased a specialized seat to reduce pressure in that area - but still feel it). I am doing kegels multiple times/day and even using red & near-infrared light therapy to recover. Seems to take forever. Is there anything you have been doing to alleviate this? Or did you learn anything about this symptom? Thanks and best on your continuing recovery.
I have an appointment with OU in Oklahoma City on April 19 with the TULSA PRO drs. My options given at my local hospital was radical surgery or beam radiation. I have been studying about the TULSA Pro procedure and will travel 3 hours to find out what they tell me. My new VA urologist suggested brachytheropy in another town. He never heard of TULSA PRO. And really wanted to refer me to get brachytheropy. I am torn but I will keep the appointment at OU medical center. Any thoughts which treatment is best?
Hi @mtb63, yes that perineum pain was very real. I just thought it was something like the area is bruised and swollen. Mine did go away after a month, didn't do that much, aleve and so on. There is an awful lot that is close by that area as you know that may get some damage. There could be just about anything you think of from nerves to GI to just the way the robot surgery works and is invasive on areas (glad I didn't have it). I would think it is something the robot "bumped" or damaged in the way it works. I hope you are able to recover from it. Perhaps some imaging might help see what is going on.
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1 ReactionHi @bobbygene I am glad you are doing what we all need to do, go more than local and get good opinions. One can use zoom and all, but it is so hard to gauge. I at first mostly used zoom with Dr Scionti who did my Tulsa, but glad I met him for going over it all too. You will have to gauge each one (Tulsa or Brachy) and the providers as well. Are they really on top of your specific data? You really want that. If you have much BPH then brachy is out, so I couldn't opt for that at all, even if I wanted. I think you should make notes after each doctor appointment, re-read and re-write and that provides clues. I mapped out a lot of what I heard and went with Tulsa because I felt Dr Scionti really looked at my data closely and was on top of the MRI problems. Hopefully some method will make you choose, but do for sure go out and talk to all the possible providers. Good notes with writing what you heard and felt on each, then re-writing helped me a ton.
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1 ReactionI chose TULSA after months of studying the options. I was already a cancer patient with Leukemia and 78 years old. I live 8 hours from Mayo Clinic and chose them. My local options were with Doc's that have preference for one or two treatments. At Mayo, there are many options with their level of staff and equipment. At my age I looked closely at side effects, not necessary longevity in that most options result in similar life expectancy. I went through this treatment on April 10 2024 therefore can't give much input yet but so far I feel fine and the most difficulty was normal bodily functions in the bathroom and manipulating the Cath around all of the obstacles More later.
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1 ReactionIt is good to hear Mayo is starting to actually do Tulsa, almost one year ago they were just working on buying the machine. I do know they are fairly restrictive on who they will do it with, only because various decisions were made for publications studies that they wouldn't do some gleason scores and so on, even though the makers of Tulsa don't say that. So while good that Mayo is doing it, they have more limits because everything at Mayo is part of a study and everything there is in a study even if you don't realize it. The study parameters determine who gets it, not your need. So if Mayo accepts you for Tulsa, good. If they say no, try another place because they have study parameters they have to work with for the study.
It is not the funnest thing having a catheter, but after it is out you may need alpha blockers for some weeks ahead. Let us know how it goes.
They do have more discerning guidelines, age for one. However I am effectively younger due to many things, diet, exercise…. Mainly I chose TULSA due to the resulting side effects from other choices.
I had a video consultation with
UCLA Dr. Raman that does the Tulsa procedure. If it's decided that I should get treated, I am a good candidate for the Tulsa procedure. Dr. Raman describes protate cancer as "minnows" and "sharks" where minnows are not an immediate threat but sharks are. To help determine the aggressiveness of my particular cancer, he is ordering a "decipher" test. This is done using the cells already removed during my biopsy. The Dr. also wants me to consult with 2 other UCLA Dr's. a urologist and a radiologist. My next consultation will be May 5th. with a radiologist. The following consultation isn't until the end of June. Dr. Raman feels that I can wait until after the 1st. of the year which is good and bad. It's good because I think the Tulsa procedure will be covered by Medical next year. The downside is that I've switched to original medicare at a cost of $450 a month and was planning on switching back to an advantage plan during open enrollment this year. Now I'll need to stay on original medicare until open enrollment after I have the procedure done. That means Jan 2026. So, that's a little less than $10k but still a lot better than $35k. Another thing the Dr. mentioned was that they were are finding from study results, some early patients receiving Tulsa had to have follow up procedures because the initial treatment wasn't aggressive enough. So, they started getting more aggressive but are now seeing an uptick in side effects. Both the need for additional treatments and side effects are still much lower than other procedures. One last point that the Dr. made is that not treating "minnows" has the same eventual outcome as treating patients that have "minnow" level cancer. He stressed that there is no perfect way to determine whether the cancer will metastasize or not, but there are good odds given all of the various tests available today. For all of you Tulsa patients, please keep posting.
Hi. New to group. I was diagnosed with PC in January after PSA test, MRI and biopsy. Gleason score is 7 3+4 with prostate size of 58 ml and a current PSA of 11. No cancer evident outside of prostate. I am a healthy 76 years, and am not wanting to do surgery, radiation or hormone treatment.
I am interested in TULSA PRO, and want to know if anyone has been treated at the Mayo Clinic in Rochester, MN? If so, what was your experience? Was it hard to get approved, long wait time for procedure, did Medicare cover all or part of the cost? Thanks