Tulsa Pro - share your experiences

You have to be a patient at Mayo and join their portal I believe to get an estimate

You're saying your share is less than $1,000.00? If so, that's great. Do you have a link to their calculator? That would be very helpful.

Mayo has an Estimate of expense procedure on their portal if considering Tulsa. I chose to go ahead with it next month, I have medicare and a supplemental plan and their estimate is less that $1.000 on our end

I didn't get a referral to "register" with UCLA. Maybe register is the wrong term. They had me send in copies of the tests I've had so far and let me know that I need to send them the results of an MRI before they will consult with me to review my case. I have an appointment this coming Tuesday with my current Urologist (not UCLA) where I'll ask him for an MRI referral. I'll also ask his opinion about waiting 3 months after the biopsy before getting the MRI. I now have original medicare plus a medigap policy. I've had HMOs forever including the Medicare advantage plan until yesterday. I've learned with Original Medicare that I can see a specialist without a referral as long as they accept Medicare. But, I cannot get testing done without a doctor's referral. If anyone reading this is considering switching from an advantage plan to original medicare, you can do that from Jan 1st to March 31st (I think those are the dates). BUT, original medicare only covers 80% of covered costs. If you want to avoid paying the other 20%, you'll need a Medigap plan. There are several versions. Private insurance companies sell the Medigap plans. One thing to be very careful of is the fact that these insurance companies can exclude pre-existing conditions. Luckily for me, since I had a Blueshield advantage plan, Blueshield has a policy where you are automatically eligible for their medigap plan and they don't exclude pre-existing conditions. Medigap polices are not cheap because on top of the medigap policy, you'll also need a separate drug policy. All told, I'll be paying $420 a month more than I was paying for my advantage plan. So, it's a gamble for me. When I made the change, I wasn't even considering Tulsa, I just wanted MRIdian and knew my Advantage plan wasn't going to cover it. So now I'm hoping my Tulsa proceedure will be covered. It would suck to pay $30K plus AND $420 a month.

I need a second biopsy and UCLA Radiology dept told me to get doctor's referral first. In your case, did you get a referral in order to register with UCLA?

My biopsy found cancer on both sides. UCLA has responded and I'm in the process of registering with them. They won't do a consultation until I submit an MRI, which I haven't had done yet. I was told advised from another doctor's office in Arizona, that I should wait 3 months after having my biopsy done before getting the MRI. Right now it's only been a couple of months. I also got a reply from another site that said medicare would cover the procedure if done in a hospital. I hadn't heard that anywhere else. I'm skeptical

At least with me, they did so many imaging before any decisions on how much to take out. I had them all seems like - MRIs, PSMA pet/ct, CT scan. Was a lot that insurance all covered but all went into deciding. There is no way a biopsy can see what is everywhere, they do patterns and so on with biopsy to try and capture what they can, but sometimes it comes down to imaging as to areas they may target with Tulsa. There is give and take at the Docs office when they go over it with you. I mean they had targeted about 2/3 of my prostate but it might have gotten up to 75% or so. It is ok, until they do the actual procedure it is just a plan based on biopsy and imaging. For those with significant BPH the decision is easier, because there aren't many offerings for us outside surgery or Tulsa, but whatever your situation be sure to go through all the options and feel comfortable you made the right decision.

I would submit that total prostate treatment using Tulsa would be excessive unless you have multi-focal disease on both sides of the prostate, but if it's confined to one side, then total ablation should not be a consideration.

I’m still trying to understand Tulsa and its limitations for whole gland treatment. Spores you my cancer isn’t defined and limited to any one or two spots. Tested + in 3 of 12 and not together. So trying to understand if I should do whole gland Tulsa and what the risks are for side effects of ablation vs say IMRT beam radiation.
Thanks for your report. They dont do Tulsa in the town I’m in.
Part of me wonders if waiting 10 months for Medicare to kick in is worth the risk. Gleason 7.

At least for me with 2.75 years in active surveillance (AS) and just watching it, I was able to save during that time. I had been seeing docs that could do FLA or Cryo, but glad in the end I went with Tulsa. The cash takes a hit but I can drive an older car till it is a lot older I suppose. FLA and Cryo can be good but I think more mixed for long term if I recall the data, none of publication data matters if you are the one getting a recurrence. At least with Tulsa if a recurrence happens in the prostate they can do Tulsa again (under Medicare next year) or if outside the prostate one can do radiation, and before with my prostate size radiation like proton they were going to have a hard time as I was surely going to get lifelong urinary problems due to large prostate size, now my prostate size should be about normal size. So we will have to see, hopefully there isn't any recurrence but I am glad I picked Tulsa. AS gave me time to think and save plus figure it out, but if pressed I would pick Tulsa if one can access cash and it isn't all tied up in retirement funds somehow.