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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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Tulsa Pro sounds like one of the best treatments for the right patient. I haven't had an MRI done yet. I did have a PSMA PetScan done a few days ago, but haven't gotten the results yet. My latest PSA was 7.5, up from 5.1, 6 months ago. My doctor did an in office ultrasound guide biopsy which found cancer in 5 of 12 sites. 2 were 3+3 and 3 were 3+4. I see that there is a "Halo" (centers that perform Tulsa) in New Port Beach CA. which is only 60 miles from me. I've read conflicting posts on whether Original Medicare will cover all or a portion of the cost. I called Medicare directly, they were clueless. Assuming I went with Tulsa, do the doctors at the center where they do the proceedure determine what tests to do prior? Do they perform those tests? Are those tests considered part of the Tulsa Pfo proceedure's cost and if not, are those additional tests (MRI etc) covered under Medicare. I could swing the 30K if I had to, but certainly wouldn't want to. I'm also considering MRIdian, why would you choose Tulsa over MRIdian or Proton?
Thanks for all you share!!
At least for me with a lot of BPH the only offers I got were surgery, and I really didn't want that. With BPH it is hard to do radiation, as they can almost guarantee urinary problems for the rest of your life and I didn't want that either unless I really really had to - though I did consider that route. So it was an easy choice of get Tulsa which improves the BPH and handles the cancer (hopefully fully one and done on that), and I was not going down the surgery route.
If you have tests still needed the Halo people near you can order that for you locally to you and it will go through insurance. I had my PSMA and labs etc locally. The Medicare code is approved to go in Jan 2025 but the cost I paid total was $31700 covered everything done at the procedure, and after, and all the zoom office visits prior, it covered the MRI during procedure, pre procedure prep, anesthesia, post procedure observation, removing catheter, nurse available since then at no extra and so on.
They improved the Tulsa procedure with some MRI thermometry last year where they take temperature up to a set point and make sure it stays long enough at that temp, using MRI to determine that. They do some MRI images first while asleep so they see the lesion, then take the temp up and maintain with the Tulsa, then after they do some more MRI to show they "burned" it all up. But it was all covered in the price you pay for me. I think my $31700 as a number of visits before and you might not need all, so you might get away a bit cheaper, hard to say on that. For me they ordered a lot, maybe you might be quicker since you have 3+4 as a max and might need less testing but they can order whatever you need.
Thanks for your input, that helps a lot. I've emailed and called UCLA, where they supposedly do Tulsa but no reply to email. Phone calls bounced me all over with no one having heard of the Tulsa proceedure. I sent an inquiry to Halo, waiting to hear back.
As far as medicare paying, I have seen that there is a temporary code that can be used, but I don't how much it covers or whether there are any centers that will accept that as payment or partial payment. Wish I knew if I could wait until the 1st. of January. I have a follow up appointment with Original Urologist on the 6th. where I'm hoping to learn the results of my Petscan.
I watched a long presentation on the Tulsa procedure today. I had be leaning towards FLA but since that's only focal, I'm having 2nd thoughts. The FLA folks say that if you need additional treatments, that's no problem other than having to pay for it again. Without selling some real estate, I can only afford a single FLA or Tulsa treatment. With Tulsa they can ablate the entire prostate plus a small margine. I assume if my cancer is confined to my prostate (as my Petsan shows) then the odds of it not coming back after total ablation are pretty good. Also, if I do only focal, what's to keep another lesion from forming? I read in one study that 40% of focal fla patients needed a follow procedure. I'm currently waiting for a couple of Tulsa providers to get in touch with me.
Did you look into Proton therapy? (I have no experience myself. I am just a ramdom person asking a question.) I heard Medicare pays for Proton. There are 2 places you might be able to reach: Loma Linda University, and UC San Diego.
I've looked into pretty much everything. Radiation (including proton) and surgery are covered by Medicare. But it looks to me that the side effects are for those solutions compared to Tulsa are worse. One can get lucky with any procedure and not have side effects, but it appears the odds are better with Tulsa, plus no cutting and no radiation.
If you have narrowed it down to Tulsa, I hope you will get a response from both UCLA and Halo. Also, if you can hold off until 1/1/2025, Medicare will pay for that treatment, I heard. Good luck to you.
Thanks!
I can't afford any cost, so I will probably wait until January 2025 before any treatment with Tulsa Pro. Does anyone know how it compares with Hifu or Cryotherapy, Laser etc. I was jusr diagnosed a month ago on February 2nd had pm MRI and 4 K score test after PSA went to 6.24 from 4.16 in 6 months. Perineal MRI Fusion Biopsy at Mayo Phoenix 23 cores, 6 cores 4+3=7 at 70% 3 cores of 3+4=7 40 % cancer contained to the prostate, confirmed by a PSMA PET scan. Surgery was not even a consideration for me, and surgeon confirmed I am not a good candidate, Radiation including Brachytherapy seems to have risks of side effects, some maybe long lasting, so I was hoping for some kind of focal therapy with littel to no side effects, I was hoping that Tulsa Pro would be the one. I have a very small volume tumor ( right lobe only) 12mm x .42 cc so about 1% of my 50.4cc size prostate. I have yet to find a good option for treatment, and at 70 years old, I may just opt to let it run it's course, it might take 5-7 years to metastasize and then I may have another 5-7 years after that, if I was 55-60 years old it would be much different. At any rate, I'm not doing anything until this fall, they say there is no difference it 15 year survival rate by delaying treatment.
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1 ReactionI'm seriously considering Tulsa. I finally spoke with a representative at UCLA that told me that they offer the Tulsa Procedure. She passed on my contact information to the department that handles Tulsa and let me know that they would contact me in a day or two. I also reached out to Profound, the manufacturer of the Tulsa machine. They too are supposed to call me back.
I had considered FLA (focal only laser), but it appears that it's pretty common for the cancer to grow in a different area within the prostate or even recur in the treated area. They can retreat but that's another $27K.
If I go with Tulsa, they can treat focal or whole gland. If they do focal and the cancer returns or shows up in a different area within the prostate, I'm hoping it can be retreated sometime after it's been approved by medicare. I've had a PSMA CTscan that doesn't show any cancer outside of my prostate. I have not had an MRI done yet, but will request one during my follow up next week with my Urologist.
Such a steep learning curve with no great answers. If money weren't a factor, I feel for the right patient, with cancer limited to the prostate, Tulsa may currently be the best solution. Unfortunately, for most, money is a factor. Hopefully medicare will pay for this next year and those diagnosed after the first of the year or for those that can wait, medicare will pay for it.