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.

pdcar4756 | @pdcar4756 | Sep 25, 2025

In reply to @ribz99 "@pdcar4756 Hi - who was your doctor ?" + (show)

@ribz99 My doctor is Dr. Woodrum.

mkulkarni065 | @mkulkarni065 | 16 hours ago

In reply to @paulcalif "I'm sure others will chime in, and I really don't know the full answer to your..." + (show)

@paulcalif

I'm sure others will chime in, and I really don't know the full answer to your questions. I just had my procedure done less than 2 weeks ago. If you read my posts, you'll know that my procedure didn't go exactly as planned because of a malfunction of the Tulsa probe. Luck of the draw I guess. They did have a backup probe and it worked fine, so they were able to complete the procedure. One thing that doesn't get discussed much is the recovery after the procedure. The catheter isn't a lot of fun, more of a nuisance than anything and a little painful especially at the tip. Consider purchasing a pair of pants made for holding a catheter bag, and wearing them for the day of your procedure. I wore jeans and that was a big mistake. You'll wear the pants if you go out of the house. While I was inside, I just wore a pair of PJ bottoms. I cut a slit in the side of the leg a little above the knee. The bag had a hook on it for hanging, so I hung it on the outside of the PJs at the bottom of the slit. This worked great, but I live alone and no one else had to see it. One good thing is, I got to sleep through the night with the catheter since I didn't have to get up to pee, I'm normally up at least 2 times and often more. One week after the procedure to the day, I drove myself 2 hours to see the Urologist's nurse who pulled out the catheter. Prior to that though, they do a little test. She said, "we're going to fill your bladder, then make sure you can pee it out". I'm thinking, ok, I have to drink a bunch of water, Nope. She takes these BIG syringes, fills them with water, disconnects the bag from the catheter while leaving the rest of the catheter in place. Then she squirts the water through the catheter directly into your bladder. Not bad at all, until it's really full, which is the goal. I think she must have put 20 gallons into me (slight exaggeration ;-).
Then she asks if I'm ready to remove the catheter, I say yep. On 3, 1,2,THREE! It's out in a flash, and it hurts, but the pain subsides back close to zero in a couple seconds. Then she says for me to pee in a container while she leaves. I did, and it was NOT easy. Only got a little out, but she must have taken some out too, because she said it was perfect. Then she did an ultra sound of my bladder to see how much liquid was left, there was none, I passed. The next 4 days were the worst. I didn't have any incontinence but urinating was next to impossible. It hurt like hell and literally just a very small trickle at first turning to drips after. It took an eternity to empty my bladder (ok 3 to 5 mins, but it felt like forever). You'll be prescribed AZO for bladder and urinary tract pain, take it. Turns your pee yellow. Take your Flomax (Tamsulosin). In my case, my flow started with pain and a spurt of blood and sometimes tissue fragments. Sometimes I thought I wasn't going to be able to void, but I did and I still am. The first 3 days after removal were rough, but it's been better since. It has not been linear improvement, there have been minor setbacks. I really don't know what's going on in there but I suspect that what's left of my prostate is swollen and impinging on my urethra, add to that the small pieces of ablated tissue that found it's way out of my prostate into my urethra AND the blood that is probably trying clot and you end up with almost (but not entirely) a complete blockage. The body is trying to sort it all out. Today is day 12 post procedure and day 5 post catheter removal. Pain while urinating has dropped from an 8 to a 2 to 3. Flow has increased from a dribble to a stream that is about 1/4 of what I had before the procedure, AND I'm happy about it because it's improved a lot and I could live with it the way it is, but still hopeful that it will continue to improve.
Now, to answer your question. My next appointment with the Urologist is in 3 months for a follow up. I don't know what's in store for me. I had two Doctors, the one who did the procedure and the Urologist who does the follow up. The procedure doctor said that there will regular PSA level tests, MRI'S AND biopsies. Not looking forward to the latter 🙁
I'm glad you're finding these posts helpful. I'm posting these details because I could find specifics online. Would I do it again? I hope I won't have to, but for me, the alternatives are scary. If you have any questions, post here and I'll try to answer. Best of luck 🙂

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@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.

paulcalif | @paulcalif | 12 hours ago

In reply to @mkulkarni065 "@paulcalif Thanks for sharing your experience. I am going through the process of determining if I..." + (show)

@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.