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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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I 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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6 ReactionsThanks so much!
Phil
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1 ReactionThank you - will pass it on!
When 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 ReactionI 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 ReactionsHey 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
Awesome!! With results like ours I think the Tulsa Procedure will become the default choice for prostate cancer isolated to the prostate. Hoping my results turn out as good as yours.
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2 ReactionsI had TULSA in November and returned for follow up March 4. I had labs done at the VA two weeks ago and PSA was 0.88. OU checked my PSA on Mar. 4 and it was 0.7. Before the procedure it was around 10. Dr. Stratton was very pleased and told me it couldn't get any better. My only side effect is dry orgasm. Erection is about like it was before the procedure. Dr. wrote a prescription for Viagra. I go back in June for an MRI. I'm very happy with my decision to go with TULSA PRO.
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1 ReactionKyle13: Here was my description: Prostate, Index Lesion x 5 Left ant TZ mid, needle core biopsy:
Adenocarcinoma, GRADE GROUP 3, Gleason grade 4+3 (score 7) (estimated 70 % grade 4)
4 of 5 needle cores are positive
70 % tissue involvement.
All 12 of the other cores were negative.
I had 30% my prostate ablated. I started sex 1 week after and have had no issues. I told my doctor that I actually think it’s better than before, but I think it’s just that I’m so happy that things didn’t change.😉
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2 ReactionsMy slow growing cancer was located in a few areas on both sides (I don't recall the proper description). My doctor required me to consult with two other doctors prior to under going Tulsa. One pushed brachytherapy the other surgery. I mention this because when I consulted again with my doctor, telling him what the other doctors had said, he seemed to agree. It wasn't until the day of the procedure that he told me I had the option of whole glad or just targeting the cancerous growths. We talked about the pros and cons of each. To be honest, I don't recall what we decided, and I don't know whether he took it all or not. I thought I asked him to only remove the growths, but in his written remarks he talked about full ablation. He may have written that prior to the procedure? I meet with him later this month and I'll be sure to ask. BUT, the bottom line is, I have NO incontinence, my urine flow is great. My erections are just as good as they were before my procedure which is not great but adequate. Most importantly, I can still reach orgasm. I do have an ejaculate that has blood in it but the blood is dissipating with session. It may be that once all the blood is gone, there won't be any ejaculate, but at 70 years old (today), does that really matter? It still feels just as good. In the final analysis, everything went perfectly and I'm better off now than before the procedure. No cancer (I hope), better flow, no side effects, and no more Terazosin.
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