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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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@mkulkarni065
I am in Southern CA so UCLA was the closest hospital offering TULSA at the time that I started looking into it. Follow up after the procedure goes on for years if not for a life time. UCLA is not next door for me but it's within a couple hours drive. Dr. Raman has been involved with the Tulsa Trials from the beginning, he is very competent and I have a lot of faith in him. He is a radiologist so he knows how to read MRI's. You'll be getting a lot of those. I did consider the other doctors as well but when I was first interested, insurance was not covering the procedure. I knew that it would be covered by original Medicare starting Jan 1st. 2025. I started my inquiry in early 2024. Dr. Raman felt I could wait as my cancer was not aggressive. I had a Blue Shield Advantage plan in 2024 and UCLA was out of network. I didn't know if I could get a referral or if I did, whether it would be covered. I was very fortunate in being able to switch to original Medicare in early 2024 as Blue Shield allowed me to add their supplemental plan. With original Medicare, I can go to any doctor and it covered the entire procedure. One of the requirements at that time was that the procedure be done at (I think) at a major hospital, not a clinic. So, for you, unless you want to pay out of pocket (I considered it, $40K-ish), you should find out if your insurance will cover TULSA where ever you decide to go. Dr. Raman has a lot of experience, UCLA is either the best or certainly one of the best medical institutions in the country. I am so happy that I chose TULSA, no side effects at all other than no ejaculate but orgasm feels the same and urine flow is better than ever in my life. No problems with continence, no problems at all BUT, to be totally upfront, I had a total ablation and my PSA level has risen from .7 immediate after the procedure to 3 over the year post TULSA. MRI's don't show any tumors and this rise could be due to a couple of things other than cancer. My last 2 psa tests were 2.9 then 3 so acceleration has definitely slowed which implies that it's not cancer recurrance. Dr. Raman is very calming and is keeping a close watch on it. I'm not too worried. If I had it to do over, I would do exactly the same. If you have any other questions, I'm happy to answer them. Best of luck.
@paulcalif
Thanks for sharing your experience. I am going through the process of determining if I should go with TulsaPro and talking to Dr Raman. Would you recommend him?
A lot of people reference Dr Scionti or Bush, I wonder if I should consider them as well. Comments from the others are appreciated.
@ribz99 My doctor is Dr. Woodrum.
Has anyone used Dr Scionti in Sarasota Florida? His Google reviews are awesome
@ribz99
You'll be happy you made the decision to go with the Tulsa procedure with Dr. Ramen. Everything works, and my urine flow is probably better than it's ever been. The first 12 hours after the procedure are the worst. You'll have a strong urge to urinate, but you'll have a catheter. They'll give you meds for that, and they work. The next day you'll be learning how to deal with the catheter. Pay attention when the discharge nurse tells you how to care for it, you have to keep it clean, the last thing you want is an infection. I would say the most important preperation is to get some pants that will accommodate your catheter bag and hose. Take those with you the day of your procedure. Icwore Levis, big mistake. They make pants specifically for this. At home, I cut a hole in the side if a pair of PJ'S, kept the hose inside the pj's pant leg and hung the bag on the outside of the hole I cut. That worked great. After a week, You'll go see the urologist, that catheter will get removed in a split second. It's painful but it's over before you have time to react. THEN, they make you pee to be sure you can empty your bladder. It's going to be difficult, but you'll do it. After that it's going to be had to pee, especially for the first few weeks. I was beginning to think that it was never going to get better, but at 6 weeks, my stream was good. You'lk see bloid in your urine for weeks. They removed most of my prostate, but not all. I'm able to reach orgasm with an erection that is as good as before the procedure, which is ok. Very little ejaculate. It's been about 8 months now and I'm super happy that I chose Tulsa. NO negative side effects which is what we all hope for. Best of luck to you, and tell Dr. Ramen hi from me. You made the right choice.
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2 Reactions@pdcar4756
Hi - who was your doctor ?
Hey Paul -
Checking in to hear how the Tulsa-pro procedure went for you with Dr. Raman. I’m scheduled to have it done next month with him.
Agree, if the tumor is on the rear of the prostate, or the prostate is small, then HIFU is best. HIFU goes through your rectum. If you have a normal or enlarged prostate and your tumor is on the front of the prostate then TULSA PRO is best since the probe goes through your urethrae
You should ask for a Prostox test by MiraDx. This test tells you if you will have any Grade 2 or higher GU long term issues after SBRT treatment. Some Drs don't know what this test is, but Mayo Jax gave me the order when we were consider SBRT. Mine came back that I was at a 95% change of having long term GU issues at or above Grade 2. I also looked at IRE (NanoKnife) but was told I am not a good candidate because my tumor measurers 2.2 cm, too large. So I am going to do TULSA PRo instead. My tumor is in the transition zone so it makes me a great candidate for TULSA Pro. They said I was a textbook patient for it. Let's pray it works long term for me.
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1 Reaction85 and you only have 3+3=6? How many cores of the biopsy? If strait up Adenocarcinoma and no other variants you should consider Active Sur valence. Up to your Drs of course, and I am not one, but why mess with 3+3=6. That is really considered pre-cancerous by Oncologists.