1. < Prostate Cancer

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.

clandeboye1 | @clandeboye1 | Jan 2 7:36am
In reply to @bjroc "If one goes for a consult to do Tulsa on your specific case, you have to..." + (show)
@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

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1 reply
bjroc | @bjroc | Jan 2 6:43am
In reply to @clandeboye1 "How long were you under anaesthetic ? I read one case on these threads where a..." + (show)
@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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1 reply
jcf58 | @jcf58 | Jan 1 5:12pm

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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paulcalif | @paulcalif | Jan 1 4:55pm

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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clandeboye1 | @clandeboye1 | Jan 1 4:22pm
In reply to @jcf58 "I go in for my six month follow up January 21. I only had 30% of..." + (show)
@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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2 replies
paulcalif | @paulcalif | Dec 31, 2024
In reply to @mrdennyb "In April, 2024 I had the Tulsa procedure at Mayo Jax. I will be 80 on..." + (show)
@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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jcf58 | @jcf58 | Dec 31, 2024
In reply to @paulcalif "I'm 69, 70 in March. I'm still in pretty good shape other than type 2 diabetes,..." + (show)
@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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clandeboye1 | @clandeboye1 | Dec 31, 2024
In reply to @paulcalif "I'm 69, 70 in March. I'm still in pretty good shape other than type 2 diabetes,..." + (show)
@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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Paul,
Thanks for the response . My PSA is 8.4 really 16.8 considering the doubling effect of Dutasteride which I have been taking for 4 1/2 years for my BPH . Otherwise at very close to 85 I am pretty healthy and fit, excluding of course my Gleason 6 prostate cancer .

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paulcalif | @paulcalif | Dec 31, 2024
In reply to @bjroc "Doing well you know my thread https://connect.mayoclinic.org/discussion/tulsa-pro-initial-experience/ I wanted to let you know what I used..." + (show)
@bjroc

Doing well you know my thread
https://connect.mayoclinic.org/discussion/tulsa-pro-initial-experience/
I wanted to let you know what I used for the days leading up to Tulsa. I was told I had the best cleared gut of anyone they ever saw so I did well with what I did. And while that sounds messy it is really two things I ate in the days before. Coconut water (no sugar one if you find it and buy a lot of it) and Knox gelatin sold in packets added to thin apple juice and refrigerated to a gel (don't buy Jello brand type gelatin- that is junk). These two will help in the days ahead of trying to clear the gut of food yet being so hungry and all, the coconut water you can drink a lot - it is almost just water but it was used in jungles of Asia in wars to help injured soldiers so it is a great food all in one and is as thin as water itself almost.

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Oh good tips, thanks!!

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paulcalif | @paulcalif | Dec 31, 2024
In reply to @jcf58 "I go in for my six month follow up January 21. I only had 30% of..." + (show)
@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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Man, I hope I get similar results. I get up several times a night to pee, but I'm also diabetic taking Jardiance which pulls sugar out of blood and eliminates it through urine, so I'm not optimistic. Glad your Tulsa results have been so good , I hope your knee gets better.

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