Going for Tulsa Pro Jan. 7th

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.

@paulcalif

Hey guys,
I got it done. I arrived at UCLA's Santa Monica hospital just before 6AM on Tuesday. They took me back to the pre-surgery area, got my IV, consulted with anesthesiologist. Then spoke with Dr. Raman who would perform the procedure. He pulled up my prostate images right in the room and we discussed my options. I could have full ablation (which I originally thought was my only choice) or he could just burn out the tumors. I asked what he would do if it were him. He said there are pros and cons to each. I opted for just removing the tumors plus a slight margin around each. I had tumors on both sides. My cancer was not aggressive. With that decided, they wheeled me into their MRI area. Here I sat, legs spread open in front of an audience of about 10 people. Luckily, I'm not shy but geez. They gave me oxygen for a few minutes then propofol. I was expecting a gradual descent into sleep, but it was immediate. I came to in the recovery room about 5:30 that evening. I soon learned that there was a technical issue with the probe portion of the Tulsa equipment. They fiddled with it for an hour or two but it just wasn't working. They removed the probe and replaced it with another that worked perfectly. Thank goodness they had that 2nd. probe. So, instead of being under for 2 to 4 hours, I think I was under for 7 hours! I had told the anesthesiologist that I had been nauseous after prior surgeries so he gave me something to help with that. I had no nausea at all. Slowly coming out from under the anesthesia wasn't too bad, BUT the urgency to urinate was extreme, like 10 out of 10. They gave me something for that sensation through my IV (I think) or it may have been a pill. Whatever it was, it worked but it took what seemed like an eternity to get relief. That was by far the worst part. Getting dressed was hard, I had worn jeans, a big mistake. I finally made it back to the Airbnb (where the heater didn't work and it was cold). I do have some tips. You're going to have a catheter with a big bag that cannot be detached. You'll have that until they remove it. Dealing with the tubing and the bag is a learning curve. Be prepared ahead of time. You guys that have already been through it might have some additional tips. I took a pair of PJ pants and cut a slit on the seam just above the knee. I pulled the bag through the slit and hung it outside the pants on the opening I'd cut. This was way better than the jeans. The problem is, you're walking around with an exposed bag for everyone to see. I live alone, so I don't care. I will have to go out into public so I purchased sweat pants designed for this. They have access zippers on the sides and big pockets on the inside of the pant legs to store the bag out of site. I'd suggest wearing those to the hospital and practice putting them on ahead of time. Your foot will get stuck in the pocket while putting them on, but you'll figure it out. The discharge nurse will teach you how to maintain and clean it, pay close attention. You'll have a foley catheter. Infections with catheters are not uncommon so hygiene is very important. Also, be sure to take antibiotics. As far as pain goes, there is NO prostate pain! The bladder urgency is gone. The only discomfort comes from the end of the penis where the tube comes out. If you're not moving, there is little to no pain, but if that tube moves you'll get a little pain. I've learned to move as little as possible and move slowly. I've been trying to make the appointment to get the catheter removed but it hasn't been easy. It's a different doctor. Dr. Raman said that once they got the second probe in, everything went as planned and he feels he got it all. Sorry for the long post 🙂

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Good to hear from you and that it went ahead. Put a little petroleum jelly around tube where catheter comes out is what they taught me, really helps. I had a bag I could change to a small bag, but it was useless. Yes that sensation of having to pee when you wake up is a lot but the meds do work.

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Great it is over! I used an Ace bandage to secure the Cather to my upper thigh. That eliminated the tugging feeling on the end of the penis. I used a 1 gallon bucket to carry the bag around my house and a small fabric bag when I was out of the house! This too shall pass 😉

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I have an appointment Tuesday which is 1 week post procedure. They'll hopefully be removing the catheter. There hasn't been any blood in my urine and still no pain. I am on the mend.

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Good news. TULSA is an easy procedure compared to everything else. I didn't like the catheter but it wasn't bad, just inconvenient. I was drinking my coffee one morning and suddenly had the urge to pee. It was a 10 plus urge. I thought, I can't make it to emergency. I pulled down my pants to check the tubing and it was twisted cutting off the urine flow. What a relief. I was amazed and thankful for the lack of prostate pain or any other pain after the procedure.

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@meemhull

I am interested in the Tulsa, I was told insurance does not cover it and it is a 30k procedure. I have decided to remove the prostate based on that, although this post gives me hope. I have an appointment next week at mayo jacksonville with the surgeon that does the tulsa, I think I will submit it to insurance and see what happens. I pray all goes well for you and your journey. Thank you for sharing your info.

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I live in Orlando but I am looking at the TULSA procedure and Mayo Jacksonville. Can you please share your experience there so far? How long you waited to get an appt and who you saw there?

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