Going for Tulsa Pro

Posted by paulcalif @paulcalif, Dec 29, 2024

I've posted here a few times over the last year and have read most of the posts from others. I was diagnosed in January 2024 through an ultrasound biopsy (it should have been MRI guided), followed by a PSA test CT scan, MRI, and Decipher test. My cancer is not aggressive, but there are three growths in my prostate. My doctors recommended a full ablation, and I’ve decided to go with the Tulsa Procedure at UCLA with Dr. Steven Raman.

I’ve waited until now because I believe Medicare will begin covering the procedure on the 1st. of 2025. Earlier this year, I switched from a Medicare HMO plan (Blue Shield) to Original Medicare with a supplemental plan, where Medicare covers 80% and the supplemental plan pays the remaining 20%. It’s been incredibly difficult to determine whether Medicare will actually cover the procedure, as I’ve received conflicting information. However, I think they will.

I considered going back to an HMO with United Health Plans, which includes UCLA physicians as in-network, but no one could guarantee that they’d cover the procedure either.

Anyway, I thought I’d document this journey. It begins on January 5th, when I’ll check into an Airbnb hotel near the procedure location. This is two days before the procedure. I’ll have to fast those 2 days and completely empty my stomach (I’ll spare you the details). In the best-case scenario, I’ll wake up with a catheter and a “burned out” prostate. I’ll need to wear the catheter for at least two weeks. Hopefully, they'll get it all 🙂

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

Profile picture for clandeboye1 @clandeboye1

THANKS FOR YOUR TIMELY REPLY. I have one liason - my prostate is 80 cc.
In addition to discussing TULSA PRO with Dr Klotz , I plan to broach the subject of Active Surveillance as he has also published extensive research addressing this matter . I am currently on AS

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My doctor (Dr. Steven Raman, UCLA) is also very knowledgeable about active surveillance and would probably advise that if it weren't for the Urologist and radiologist that he works with, both suggesting full prostate ablation. So, I'm getting it over with. I've waited a year. It would suck to have it spread knowing I had a chance to catch it before it did.

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THANKS FOR YOUR TIMELY REPLY. I have one liason - my prostate is 80 cc.
In addition to discussing TULSA PRO with Dr Klotz , I plan to broach the subject of Active Surveillance as he has also published extensive research addressing this matter . I am currently on AS

REPLY
Profile picture for clandeboye1 @clandeboye1

What size were your lisons and what size was your prostate .?
Yes in my consult with Dr. Klotz , who as I inducated was on thhe original research team at Sunnybrook with Dr. Chopra , I will address your proposed questions .
Dr. Klotz is currently conducting another TULSA - PRO Trial at Sunnybrook . At my age I would not qualify . The cost in Toronto is $ 30,000 Can. dollars $ 20,000 USD

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I had several tiny lesions, but my prostate size was over 100cc. Originally they aimed at about 2/3 of prostate for ablation fraction but it was higher maybe 75% on MRI post procedure image report they gave me. Dr Klotz is about the best, that sounds like a really good person to go to. Don't worry about these trials, that is about papers, the studies done for papers always have limits, go because you really want it for your case. For papers they propose so many x cases all y gleason, basically to make paper publishing less time consuming. I did some papers (completely unrelated and in research) it can take several years to get a paper published and they put all these limits so the paper publishing will be less basically. Keep in mind several years ago they didn't take the temperature up for long during Tulsa, now they take it up for so many minutes while watching the MRI all to be sure they kill what they see.

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Profile picture for bjroc @bjroc

If one goes for a consult to do Tulsa on your specific case, you have to ask what the proposed ablation fraction (how much they take out inside prostate) and also how much BPH you have. If you have a lot of BPH and the ablation fraction in high, and the most recent kinds of Tulsa they like to take temperature up long enough to really kill, it takes time. A lot of time.

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What size were your lisons and what size was your prostate .?
Yes in my consult with Dr. Klotz , who as I inducated was on thhe original research team at Sunnybrook with Dr. Chopra , I will address your proposed questions .
Dr. Klotz is currently conducting another TULSA - PRO Trial at Sunnybrook . At my age I would not qualify . The cost in Toronto is $ 30,000 Can. dollars $ 20,000 USD

REPLY
Profile picture for clandeboye1 @clandeboye1

How long were you under anaesthetic ? I read one case on these threads where a club member was under for 4 hours . In Toronto the complete procedure takes less than 1/2 that time .

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If one goes for a consult to do Tulsa on your specific case, you have to ask what the proposed ablation fraction (how much they take out inside prostate) and also how much BPH you have. If you have a lot of BPH and the ablation fraction in high, and the most recent kinds of Tulsa they like to take temperature up long enough to really kill, it takes time. A lot of time.

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About 3 hours. That included adding contrast after the procedure to ensure coverage. Doctor's Note: "Post ablation contrast imaging demonstrated appropriate ablation zone encompassing the prostate cancer."

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I've read that it can take from 2 to 4 hours. While I don't like the idea of going under anatheisa at all, it's better (in my mind) than going under for surgery or having to go for radiation 5 to 40 times.

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Profile picture for jcf58 @jcf58

I go in for my six month follow up January 21. I only had 30% of a 45 cc prostate ablated and my recovery was very quick. Urine stream returned to normal after about 6 weeks. Bonus is I only have to get up to pee once per night. Was 2-3 times prior.
Wish my recent 1/2 knee replacement was as easy of a procedure and recovery😉

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How long were you under anaesthetic ? I read one case on these threads where a club member was under for 4 hours . In Toronto the complete procedure takes less than 1/2 that time .

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Profile picture for mrdennyb @mrdennyb

In April, 2024 I had the Tulsa procedure at Mayo Jax. I will be 80 on my next birthday but was considered younger by "effective" age and the care group voted to go forward when most surgery after 72 or so was the line. After active surveillance, they decided not to wait in that I also have Lymphoma and Leukemia issues. I had no side effects and the catheter for 2 weeks with few issues other than the inconvenience. I returned for the first followup in October with good results pertinent to PSA and MRI. I have been reluctant to in effect "promote" due to differences in our choices and health overall, but I am so happy with my choice. I read everything I could find prior, had discussions with trusted and informed sources.

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Glad to hear your Tulsa procedure went well. I hope you get the best results possible for your other challenges. Thanks for posting.

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Profile picture for paulcalif @paulcalif

I'm 69, 70 in March. I'm still in pretty good shape other than type 2 diabetes, prostate cancer, and basil cell skin cancer that I've had removed a few times. Other than that, I'm great. Hum, writing it out like that doesn't sound too healthy, but my A1c is under 7, my weight is right, and I'm active.

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I laughed at your response! I am 66 and consider myself very healthy. Then I list out all the things I have had done in the last ten years and it doesn’t sound good - cataract surgery, carpel tunnel surgery, Mohs surgery for Basel cell cancer, prostate cancer, and 1/2 knee replacement! I feel great and feel blessed I live in an era when we have these options to improve/maintain life.

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