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Going for Tulsa Pro
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 🙂
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@diverjer
I will have a complete ablation of my prostate meaning no prostate tissue remaining. You may still be a candidate even with your 2 large cribriforms.
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1 ReactionRepeat from other thread....
I had Tulsa Pro, but am now having a recurrence so not too happy these days. I think one thing I ran into, and maybe it helps somebody if I mention it, but Dr Scionti told me he would take 70 or 75% of prostate out with Tulsa. It appears he only did about 40% in talking to imaging and other places since him. 40% was NOT enough to get all my cancer. If he had done what he told me I would be probably fine. Now he doesn't want to handle me so pooh (putting it kindly) is all I think on that. Anyway, if getting Tulsa, my experience says higher % ablation fraction is a good idea. Again, just bringing it up so anyone else getting Tulsa can opt for higher ablation fraction. Do 70% or 80% or whatever, maybe 100%, not 40%.
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2 Reactions@pioneer
I should have added that 5 of biopsy were 4+3 and 12 were 3+4, decipher was .85. PSMA PET said uptake throughout the prostate including transitional zone and peripheral zone. Lesion in left transitional zone at base to midgland SUV value 11.1.
@diverjer
As long as the capsule is in tact you have a shot with Tulsa Pro I believe. My biopsy revealed 17 out of 20 cores that were cancerous. I also have some cribriforms. My Gleason is 4+3=7. For me, being almost 70, it was a no brainer doing the Tulsa one day procedure vs 9 weeks of radiation and two years of Orgovyx. Again, I am having a complete ablation.
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2 ReactionsAm scheduled for RP in May here locally. Checked around, nearest place for Tulsa Pro is 400 miles one way trip. Been a real pain, was going to KUMC (150 mile round trip) a national recognize Cancer Center, but had lots of problems and no communications hardly at all. Been messing with them since late December. Got all my testing done there. Wednesday spent 40 minutes on phone with KUMC, transfered 7 times and question still not answered.. Nurse navigator doesn't respond to questions. Anyway, I tried to get them to schedule PR and after several weeks and nothing getting done, I just scheduled it with a local person here who's done lots of DaVinci robotic surgeries and a couple of thousand PR. He actually did Urolift on me about 5 years ago so I do know him.
Not sure I want to start all over with a place 400 miles away and might have to stay several weeks. But might try to call and see what the process would be, but at the point of being super frustrated and stressed about the whole process.
@diverjer I started this thread over a year ago. My PSA level went up after full ablation the Tulsa Procedure, but my last PSA level was lower. I had recent MRI and PSMA Petscan, the MRI showed nothing, I get the PSMA results soon, hopefully, tomorrow. I'm writing here because if I had to do it over I would absolutely have the Tulsa procedure again and Surgery would be my last choice. If I had to travel 400 miles, I would do it. It's done in one day. When I had it done, I "only" drove 100 miles, but that was in LA, so it felt like 400 miles. I stayed at an Airbnb the night before and the night after. Look up potential side effects for every procedure you are considering. Look at recovery times. Look at how many radiation appointments you'll need to attend if you go that route. If you're a candidate for Tulsa, I'd say go for it.
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2 Reactions@monkee So did your urologist suggest Tulsa Pro, or did you ask for it? Have you gotten it done yet? What was your condition before procedure?
I have a Gleason 2, recommended surgery or radiation but not Tulsa, told HIFU doesn't have a high success rate. Is Tulsa Pro better? Thanks in advanced. Good luck with your journey.
@paulcalif so did Medicare cover the procedure?
@paulcalif
These people at KUMC are driving me crazy. I asked about the TULSA and this is the reply:
Dr. Duchene response says that you would not be a candidate for focal therapy, like HIFU or TULSA-PRO, because you have high risk prostate cancer.
Now why they are driving me crazy is the PA-C said in clinical notes+++> Re-discussed staging with Jerry--> cT1c; Unfavorable intermediate-risk prostate adenocarcinoma.
Then RO said Stage 2B prostate cancer is a localized, intermediate-risk cancer confined to the prostate gland, affecting more than half of one side or both sides
Some other notes from surgeon (Dr Duchene) have called it clinical stage cT1cN0M0 (which is not high risk- it's intermediate), but then as a side note he says: Biopsy confirmed extensive grade group 2–3 prostate carcinoma with 2 cribriform glands (which actually puts him in a likely higher risk category -- high risk prostate cancer), clinical stage cT1cN0M0.
In the same sentence he says, likely higher risk category -- high risk prostate cancer and then says cT1cN0M0 which is intermediate-risk.
I'm no doctor, but I don't see why the risk level would matter. They can do total ablation with Tulsa which is designed to kill all of the cancer cells within the prostate. Now if you have cancer cells very close to your urethra or nerve bundle, then that would make sense to me. I would contact a doctor with a lot of experience with Tulsa for a second opinion. Dr. Steven Raman with UCLA did mine. He was involved with the Tulsa trials, but there are others. You may want to check out Profound medical's website, they are the makers if the Tulsa equipment, I think it's tulsaprocedure.com.