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.

At least for me with 2.75 years in active surveillance (AS) and just watching it, I was able to save during that time. I had been seeing docs that could do FLA or Cryo, but glad in the end I went with Tulsa. The cash takes a hit but I can drive an older car till it is a lot older I suppose. FLA and Cryo can be good but I think more mixed for long term if I recall the data, none of publication data matters if you are the one getting a recurrence. At least with Tulsa if a recurrence happens in the prostate they can do Tulsa again (under Medicare next year) or if outside the prostate one can do radiation, and before with my prostate size radiation like proton they were going to have a hard time as I was surely going to get lifelong urinary problems due to large prostate size, now my prostate size should be about normal size. So we will have to see, hopefully there isn't any recurrence but I am glad I picked Tulsa. AS gave me time to think and save plus figure it out, but if pressed I would pick Tulsa if one can access cash and it isn't all tied up in retirement funds somehow.

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I’m still trying to understand Tulsa and its limitations for whole gland treatment. Spores you my cancer isn’t defined and limited to any one or two spots. Tested + in 3 of 12 and not together. So trying to understand if I should do whole gland Tulsa and what the risks are for side effects of ablation vs say IMRT beam radiation.
Thanks for your report. They dont do Tulsa in the town I’m in.
Part of me wonders if waiting 10 months for Medicare to kick in is worth the risk. Gleason 7.

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@paulcalif

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.

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I would submit that total prostate treatment using Tulsa would be excessive unless you have multi-focal disease on both sides of the prostate, but if it's confined to one side, then total ablation should not be a consideration.

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At least with me, they did so many imaging before any decisions on how much to take out. I had them all seems like - MRIs, PSMA pet/ct, CT scan. Was a lot that insurance all covered but all went into deciding. There is no way a biopsy can see what is everywhere, they do patterns and so on with biopsy to try and capture what they can, but sometimes it comes down to imaging as to areas they may target with Tulsa. There is give and take at the Docs office when they go over it with you. I mean they had targeted about 2/3 of my prostate but it might have gotten up to 75% or so. It is ok, until they do the actual procedure it is just a plan based on biopsy and imaging. For those with significant BPH the decision is easier, because there aren't many offerings for us outside surgery or Tulsa, but whatever your situation be sure to go through all the options and feel comfortable you made the right decision.

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My biopsy found cancer on both sides. UCLA has responded and I'm in the process of registering with them. They won't do a consultation until I submit an MRI, which I haven't had done yet. I was told advised from another doctor's office in Arizona, that I should wait 3 months after having my biopsy done before getting the MRI. Right now it's only been a couple of months. I also got a reply from another site that said medicare would cover the procedure if done in a hospital. I hadn't heard that anywhere else. I'm skeptical

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@paulcalif

My biopsy found cancer on both sides. UCLA has responded and I'm in the process of registering with them. They won't do a consultation until I submit an MRI, which I haven't had done yet. I was told advised from another doctor's office in Arizona, that I should wait 3 months after having my biopsy done before getting the MRI. Right now it's only been a couple of months. I also got a reply from another site that said medicare would cover the procedure if done in a hospital. I hadn't heard that anywhere else. I'm skeptical

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I need a second biopsy and UCLA Radiology dept told me to get doctor's referral first. In your case, did you get a referral in order to register with UCLA?

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I didn't get a referral to "register" with UCLA. Maybe register is the wrong term. They had me send in copies of the tests I've had so far and let me know that I need to send them the results of an MRI before they will consult with me to review my case. I have an appointment this coming Tuesday with my current Urologist (not UCLA) where I'll ask him for an MRI referral. I'll also ask his opinion about waiting 3 months after the biopsy before getting the MRI. I now have original medicare plus a medigap policy. I've had HMOs forever including the Medicare advantage plan until yesterday. I've learned with Original Medicare that I can see a specialist without a referral as long as they accept Medicare. But, I cannot get testing done without a doctor's referral. If anyone reading this is considering switching from an advantage plan to original medicare, you can do that from Jan 1st to March 31st (I think those are the dates). BUT, original medicare only covers 80% of covered costs. If you want to avoid paying the other 20%, you'll need a Medigap plan. There are several versions. Private insurance companies sell the Medigap plans. One thing to be very careful of is the fact that these insurance companies can exclude pre-existing conditions. Luckily for me, since I had a Blueshield advantage plan, Blueshield has a policy where you are automatically eligible for their medigap plan and they don't exclude pre-existing conditions. Medigap polices are not cheap because on top of the medigap policy, you'll also need a separate drug policy. All told, I'll be paying $420 a month more than I was paying for my advantage plan. So, it's a gamble for me. When I made the change, I wasn't even considering Tulsa, I just wanted MRIdian and knew my Advantage plan wasn't going to cover it. So now I'm hoping my Tulsa proceedure will be covered. It would suck to pay $30K plus AND $420 a month.

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Mayo has an Estimate of expense procedure on their portal if considering Tulsa. I chose to go ahead with it next month, I have medicare and a supplemental plan and their estimate is less that $1.000 on our end

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@mrdennyb

Mayo has an Estimate of expense procedure on their portal if considering Tulsa. I chose to go ahead with it next month, I have medicare and a supplemental plan and their estimate is less that $1.000 on our end

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You're saying your share is less than $1,000.00? If so, that's great. Do you have a link to their calculator? That would be very helpful.

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@paulcalif

You're saying your share is less than $1,000.00? If so, that's great. Do you have a link to their calculator? That would be very helpful.

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You have to be a patient at Mayo and join their portal I believe to get an estimate

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