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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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 🙂
Really appreciate you guys reporting on your procedures. It is super helpful! When you get a chance, I'd be interested in what your long-term follow-up protocols are? Will you be having scheduled biopsies regardless of PSA readings? How frequent will your follow-up visits be...if you know?
It's a little better today, and I think you're right. I haven't had any tissue large enough that it had to be pulled out, but there is always a little spurt of blood followed by small pieces of tissue.
I think it could be the tissue. Not a lot of volume/pressure to flush that thru at this point. I know that happened to me. I could see a little bit of the tissue and just pulled it out. Flow was then back to what it had been prior.
One factor could be what you eat, though it seems they really removed catheter early on you so you need to be extra careful what you do and eat. Be sure you are focused on anti-inflammatory foods at this time, inflammatory ones could potentially swing you to a bad day.
Google anti-inflammatory foods vs inflammatory
My condition took a turn for the worse, down to a dribbles again. I was expecting a linear improvement. Any of you guys have good days and bad days with flow early on?
The Tesla had to make more stops - lol
My stream is a little better today. Still painful but flow has improved a little. As the Beatles sang, "It's Getting Better All the Time".
They kept my catheter in for 16 days after the TULSA procedure, so my experience might be different, but I would describe my peeing as a slow flow, not a dribble, and there was never any pain with urination. I'm assuming that, like me, after they removed your catheter they performed an ultrasound to confirm that your bladder was emptying sufficiently.
We made a five day road trip one week after the catheter came out, and the Tesla required more stops than my bladder.
I was pretty much like you, but I had to drive home after catheter out, and home was 22 hour drive. I think that was the hard part, but I learned to stand in a stall and that helped to pee, that rather than sit which seemed to restrict a bit. Maybe it was odd 22 hour drive so use gas station bathroom or fast food bathroom with stalls, go in a stall and then stand and lean forward a bit, perhaps others in these bathrooms were wondering, but it was what I needed and basically no way standing at a urinal would do it for me as you mention it was slow. So just do what you need to do.... I think your catheter was out earlier than mine so you might need another week here, but after I got back from my drive it was not so bad and things improved fairly easily with all the flomax and so on. Not sure on AZO if that would help, I had some in my bag but I never used it. I think Boswellia did help as I got home I had some for when my wife gets joint pain so that and flomax did the job, but again I was further out.
That's encouraging, and happy for you. As I said, I'm still peeing like an eye dropper. Every time I go I'm afraid that "this time I'm going to be obstructed" but then with pain it dribbles out. I'm taking the shot gun approach now with meds. Flowmax, Terazosin, AZO, ibuprofen. I think part of my problem stems from the catheter where the anchor point was too high, injuring the exit point. If I knew for sure that this temporary, it'd be no big deal, I can take a few more days or even weeks, but I wouldn't want to live the rest of my life like this. You guys that had trouble at first, how bad was it? Hearing you stories of improvement are encouraging.