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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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Hey jcf, Glad you are doing well. A buddy of mine was just diagnosed Gleason 4+3 unfavorable; the tumor is very close to the rectum.
He’s consulted with RO’s and surgeons; he has consult next week at Sloan for some sort of focal therapy. I told him to look into TulsaPro since you and others seem pleased with your results.
He’s in NY and would have to travel to Mayo Jacksonville; any particular doctor he should arrange a consult with? The position of the tumor seems to be the wild card in all this. Many Thanks!
Phil
I did mine at Mayo Rochester with Dr. Woodrum. Not sure if that location of tumor is an issue. They do put a cooling tool in your rectum during TULSA to protect the rectum from excess heat.
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2 ReactionsWhen it is near the rectum, HIFU is an alternative option that uses the same technology as Tulsa, so that person can look up HIFU providers plus Tulsa providers. Only trouble is if they have significant BPH they won't use HIFU. But HIFU would be the additional option when lesion is near rectum.
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1 ReactionThank you - will pass it on!
Thanks so much!
Phil
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1 ReactionI had TULSA on 26 Feb. As to the physician to use, there are about 24 centers in the U.S. that provide TULSA and they are about equally divided between the east and west sides of the Mississippi River. If you go to tulsaprocedure.com (an off-shoot of profoundmedical.com) and select Find A Center you will get a list of Centers and Physicians that provide TULSA.
As for your ASAP, did you have the gene/DNA study such as Prolaris or Decipher? If not, you should if it is applicable. ASAP is tricky so be careful and don't wait too long thinking you will outlast it. My opinion is you should do a PSA at least every 6 months and a MRI once a year. If the doctors talk you into another biopsy then be certain it is a Transperineal Biopsy which can sample the entire prostate, a 30 core saturation biopsy is definitive of what is in your prostate. Doctors may fight you on some stuff but remember, it is your cancer and not theirs. If you have a doctor that is disagreeable then find another doctor. Remember, it is not your doctors job to save insurance money.
As far as sexual function. Depends. People generally come out of TULSA with the same level of ED or Continence as they went in. The one notable exception is if they ablated the ejaculatory ducts then you will have dry orgasms. I struggled with that for a short while (mentally) and decided that age 69 I really did not need to leave a 'calling card' anymore, so to speak, and living free of prostate cancer for the remaining 10 to 20 years of my life was more important.
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5 ReactionsCloser to NY, Yale (Drs. Sprenkle, Arora, Schulam, Kim, Oh, Lee?) seem to be experienced (50-100 Tulsas?). Hopkins seems to have done 25-50, according to AI (Pavlovich). I'll likely go to Rochester but these were on my list. Dave
Looking through post. Weighing options. My dr has just been watching my psa climb over last couple years even though my father and brother both had prostrate cancer. Gradually at first from 4 to 4.5 to 5. Last time jumped to 7.9. MRI showed prostate volume of 104 cc. 2 masses. one 28mm and second is 16.1. Bx on Wednesday. Radiologist classified them both as PI-RADS 5. Looks like capsule is intact. Hoping insurance will cover something other then just surgery. Read someone from Oklahoma had it done at OU medical. Has anyone had this procedure performed at the proton center in Oklahoma City? For those that had this how long ago did you have it done, would you do it again, any side effects. Thanks
Markc68: I did Tulsa nine months ago at Mayo in Rochester. I would definitely do it again. I just had my nine month PSA and it came back at .69, the exact same PSA as it was at three months. PSA was 8.6 prior to treatment. My six month MRI was completely clear. For me, the procedure was painless and I’ve had zero side effects. You can read all my comments and my description of the procedure if you click on my profile.
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2 ReactionsI had TULSA-PRO in October 2024 at Mayo Rochester. Like you I had a 100cc prostate, but only one lesion with capsule intact. As part of this procedure the doctor also ablated about 50% of my prostate. I just had my 6 month checkup and MRI. My prostate is now 50cc, reasonable for a 78 year old male. My PSA has remained constant at 1.3 for both the 3 month and 6 month tests. My MRI at 6 months showed nothing of concern. And I'm peeing like a 16 year old. My body is still absorbing the dead tissue inside my prostate, and doctor said it could take up to 18 months for that to run its course. I'm having some slight to moderate pelvic pain when I sit for a longer period of time on something hard like my desk chair. And I have some discomfort when I bend over to pick something up or to tie my shoe. But if this is my new normal, I can live with it. Everything else seems functional and fine. I'm pleased so far with my decision on focal therapy. The catheter for a few days after the procedure was the worst part of this, but it's not so bad that I'd not do it again if I had to. A person has to be a "candidate" for this procedure.........in your case 2 lesions may be an issue or may not. Calcification inside the prostate may also be an issue. But have it done by a highly experienced doctor at a center of excellence. That is a critical criteria.
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