Connect
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 🙂
Like
Helpful
HugInterested in more discussions like this? Go to the Prostate Cancer Support Group.
Connect
Have follow up on Tuesday. Dr only wanted to repeat psa in 6 months but we insisted on a sit down. In mean time we are working on second opinion. Psa has gradually gone up but has been sitting around 5.5 for last couple years. This spring it jumped to 7.8 and they put me on doxycycline for 6 weeks and repeated psa after it was complete. Psa came back down to around 5 but he wanted to do mri. After results of mri urologist wanted to do bx. Was not mri guided but was ultrasound guided. Just scared he missed the areas of interest. I had mri little over 1 yr ago and they seen nothing of interest. I attached mri from Feb of last year. Before mri I ask urologist about psma scan and he was like, let’s just see what bx shows first. If positive we will do one. In process of getting all medical records around for second opinion. I have read that some pi-rad5’s can be benign but very rare? Thanks everyone.
MRI 2:27:24 (MRI-22724.pdf)
Please do ask for second opinion about MRI findings. Since you already had biopsy maybe you can insist on having PSMA scan. Was Decipher test done on your tissue ? If not- ask for it to be done. What is your PSA and what were previous PSA results if you are on active surveillance.
Whoa!! Your wife is correct to be freaking out, no kidding. I am not a doctor, but I see numerous warning signs in that report. Highlight/copy some of those findings and add in the word prostate, then Google and see what comes up. Not to frighten you, but you need to be immediately proactive on this. Have you determined if the University of Texas Southwestern in Dallas can take you and your insurance? If you cannot do TULSA, then look at HIFU from a local provider, it is about a 1/3 less expensive, I believe. Regardless, start taking action now, don't worry, but just have resolve and move forward.
-
Like -
Helpful -
Hug
2 ReactionsI agree with Phil. Get another opinion on those lesions. I hope it was a fusion guided biopsy where they targeted those lesions with extra emphasis.
-
Like -
Helpful -
Hug
2 ReactionsThat MRI report is anything BUT negative!! It shows 2 diffuse lesions PIRADS 5 abutting the capsule - you need this looked at and addressed quickly by someone else.
Not to raise the alarm, but the interpretive read of the MRI at the bottom says it all.
Phil
-
Like -
Helpful -
Hug
2 ReactionsSo had my biopsy last week. Urologist office called today. Said results were negative and have another psa in 6 months. Wife is freaking out and I’m feeling like we are being blown off. I don’t want to be a pest or hypochondriac but I’m scared maybe he missed the masses with biopsy gun. MRI showed 2 masses that were PI-RADS 5. I’m gonna load my mri results on here. What do you guys think?
MRI report 4:15:25 (MRI-report-41525-1.pdf)
Contacted HealthChoice today. Said if procedure was not available in state, I can petition them to see if they would cover out of state. Said it is possible they would maybe cover. We will see what happens. Thanks!
-
Like -
Helpful -
Hug
1 ReactionWell, look at HIFU then, that is a possibility and depending on your case, may be far better than surgery. HIFU is similar to TULSA, but a different approach. You really should contact HealthChoice and see if you can do a out of State procedure.
-
Like -
Helpful -
Hug
1 ReactionI managed to come up with the $33k. I sold a couple of cars and am fortunate enough to be able to pay for the procedure.
-
Like -
Helpful -
Hug
1 ReactionThanks. That is what I was afraid of. I have already contacted Oklahoma Proton Center. They will not accept any insurance. Private pay only. We have Healthchoice insurance. I don't think they will pay out of state. Looks like I may be stuck with surgery. Can't come up with the 33k that Oklahoma Proton Center says they need. Thanks again for your input.