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Tulsa Pro - share your experiences
I want to thank all for support on my recent prostate cancer treatment, Tulsa pro. I am very thankful to my wife and my daughter who helped out lots with support. I am thankful to Mayo for finally finding the extent of the problem with a transperineal biopsy. I am also very thankful to Dr Scionti in Sarasota for being a true expert for the Tulsa procedure. Tulsa leaves everything intact except for the prostate cancer tissue plus some tissue as a safety margin near it. It goes nowhere near sphincters and nerves. I was very glad to not have any extra prostatic cancer, or cancer in seminal vesicles, ducts, nerves etc. I did have PSMA scan showing this. We will just have to see if everything works out in the long run cancer wise.
What I had cancer wise
Originally in 2021 I had a small spot seen in transition zone. It got some 3+3 more toward back where they could reach via trans rectal biopsy (done at a local university), but they could not reach the anterior where most of it was in 2021. My 2023 Mayo done transperineal biopsy had one needle at the anterior transition zone with all Gleason 4, it was not a big spot (0.2 mm caught in needle). Keep in mind in 2021 further to back it had just Gleason 3. I am not going to get caught up in Gleason scores, I know what was sampled in past, and though one needle had 4 in the front/top of anterior it was just a tiny spot in this tumor and most toward posterior was not hit here in 2023. There was also a small 3+4 on one side seen now in 2023. My PSA headed up steadily during the 2.75 years on surveillance. My final prostate size before any treatment was 110 cc, and final PSA around 16.
What worked on biopsy, and what did not.
2021: Trans rectal in 2021 biopsy did not sample well, missed most of what is in anterior transition zone and one of my problem areas. But since then, I have had plenty of time to read on things like Tulsa pro, radiation types, and so on. So was glad to have the time.
2023: Mayo Transperineally done biopsy caught the problems.
Some things I learned about MRI
What I learned is that, for me at least, diffusion weighted MRI shows very clearly what docs need to see to treat. Regular contrast enhanced MRI left my doctors not that sure, sometimes even confused. Diffusion weighted MRI to me was crystal clear where things were and what needed to be treated. Only Dr Scionti seemed geared up for diffusion weighted MRI. That includes other places I asked for initial consult, and Mayo that I went to for a while – all geared up for contrast enhanced MRI only really seemed like.
Who does new kinds of treatments.
Mayo is top notch for advanced cancers that have spread, but I learned they are just starting out with other new treatments like Tulsa Pro. I liked Mayo’s proton as a possibility, but they have filled many slots for it, and sometimes it is hard to get through insurance from what they said to me. They also do everything under protocols, they have to develop those for these new treatments of any kind since everyone looks at Mayo. So in some ways they are behind a bit, having to do everything with a protocol instead of just looking out for what is best for one individual patient. Thus, I found I had to call around if I wanted anything new. Some places are better than others seemed like to me at calling places. The best I heard from was Dr Scionti in Sarasota.
Before Tulsa for me
Because the size of my prostate was large, and one needle had all Gl 4, we did bicalutamide and dutasteride for several months. They want that temperature up during Tulsa at the top so while I still met the Tulsa size limits we shrunk things a bit to be sure.
Travel
I had to travel to Sarasota, about a 22 hour drive for me. Found a nice Airbnb down there not too far away. I drove since date of coming back was uncertain. I wanted his office to take catheter out, others might fly and self remove catheter I understand, but I was unsure about that. It is good I rented an Airbnb for more than two weeks is all I can say.
Tulsa procedure
Obviously asleep, seemed to go well. They took out about 2/3 of the prostate tissue with the Tulsa pro. The before and after MRI done while asleep clearly shows the tumors on diffusion weighted MRI, and post procedure MRI with contrast show those same areas treated well and no longer there. Woke up with the bladder spasms a real lot, oxybutynin seemed to really help but it was hard to wake up with Foley catheter and the spasms. Next day the spasms were gone, but it was tough to sit. For ten days with Foley catheter, I watched old Dr Who, movies, and obviously just sleeping. A restful period is the best help, not having to do much was important for me at least. Foley catheter for ten days was no fun but it wasn’t as hard as I imagined perhaps.
Post catheter
Was a bit tough, I still had some inflammation perhaps worse than some get, plus there is scar tissue for up to 6 months, so it was hard to pee. Alpha blocker was a must just to pee. Another couple weeks brings me to now at this writing and it is a lot easier to pee. But it was a hard travel back. I suggest stay in an Airbnb for some time post procedure plus give plenty of time after catheter is out.
Future
We will see if this all worked on the cancer over next year or two, and on after that. Hoping for no recurrence of course.
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@fleetsailor
Over treating Gleason six is a major problem. Many doctors do not consider it cancer. Your doctor may be pressing you to do something that’s not necessary. They stopped doing PSA test 12 years ago because people were being over treated when they had a Gleason six. Don’t let your doctor take advantage of you be informed.
Here’s some videos from doctors about why after surveillance makes sense when you have a Gleason six
Here is a video with Dr. Laurence Klotz, one of the experts on active surveillance. He can give you answers as to why you would or would not be a good candidate for active surveillance.
Here is a video by Dr. Epstein discussing active surveillance and more
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2 ReactionsMy PSA went from 4 to 15 in one year and had a gleason score of 7. After multiple tests and biopsies, scans etc., I found out that not only did I have cancer, but it had metastasized in my lymph system. We are aggressively treating the cancer. My point is, that sometimes prostate cancer can become very active quickly. I would recommend doing what you think is best for you. If you can afford it, do additional testing and that way you can make the best decision. Too many people, including doctors, use anecdotal information, which is not science based facts.
Update please
@jeff101650
I had cryo-ablation @ Mayo Dr Woodrum. Too early to say more.
So what I had after 3 years was a recurrence at around 4 pm on the prostate clock, Scionti didn't want to handle it as it is where my GI comes up to the prostate, he didn't say that just that he would not handle. I was ready to do radiation, turned down for brachy due to bone interference. But I got Dr Woodrum up at Mayo online and he offer cryo-abalations post Tulsa Pro for people who get recurrences. He injects a spacer bolus of saline to push colon/GI away, and he cryo-ablated this past week. Very similar to Tulsa, just Dr Woodrum is very thorough, so that is great.
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3 Reactions@bjroc First, congratulations on addressing your Tulsa Pro [TP] recurrence by finding Dr. Woodrum. "Very thorough" is exactly what everyone needs.
I read your Nov 2023 original post where you wrote "My final prostate size before any treatment was 110 cc". 110 cc... Tulsa Pro whole gland ablation will reduce prostate size by 90% approx leaving just 11 cc of prostate to cryoablate. I find that beyond-imagining.
So am I correct to assume that salvage-cryo for Tulsa Pro recurrence is only for those who either had original TP PARTIAL ablation or had a big prostate to begin with?
Either way, your tenacity is greatly respected and will benefit others. Like me. Cheers 👍
@kjholz I cant tell you all the candidates eligible for cryo, they offer it to others but not sure criteria,
No matter what they say on "total" with Tulsa when they get in there there are areas not covered, edges, places near GI/Colon, near nerves, area the geometry doesn't allow, whatever it may be and they leave more than one thinks. Anything they may say are approximates, as much area is left.
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2 ReactionsHi everyone I’m seeking advice. I have RP scheduled November 3.
I’m a3+4 Gleason with a.48 decipher psa over the past 24 months is 3.6 to a 5.4 last week!
My mri shows one side has visible trouble.
I’m 67 and looking for options!
@solar4ever
You left a lot of information out. I generally feel what I wrote below fits. It was written for somebody 68.
Are you a T2b?
How many cores had 3+4, how many total cores were taken?.
Were any of these things found in the biopsy intraductal, ductal, large cribriform, Seminal vesicle invasion, EPE or ECE. (Extraprostatic extensions extra capsular extensions). They can make the cancer much more aggressive.
I just wrote this to someone else and it applies to you as well
The one thing I’m missing is your T level? Are you a T2c by any chance, since it’s on both sides of the prostate. Not a T3 which is more aggressive.
You could get SBRT. It’s very commonly used and works well. It’s more likely one and done with what appears to be a lower level case. It actually is more recently the preferred method for handling cribriform. In the past, they thought surgery was better but more recent testing has shown that radiation is more effective. Some doctors still want to do surgery.
If you get surgery, make sure to get Retzius sparing surgery which can keep you continent. If you could also have the nerves spared that would make getting an erection more likely. With it on both sides of the prostate, there may be a problem. This has to be discussed with the surgeon.
After SBRT most people can still get an erection. Overtime it usually fades because they have burned the nerves.
In either case erection problems can be resolved. You can use injections to get an erection, Sometimes Cialis or Viagra will work and if not the implant is really popular 90% like it.
It will take a few months to be acclimated after surgery. You may have incontinence issues for a few weeks. You may not be able to get an erection right away.
I think I would probably prefer radiation if I were in your exact situation. If ED Problems eventually come, you can always resolve them.
@solar4ever Unless it is extended out of prostate, do talk to all the focal doctor experts which by the way they can take out most or just about all of the prostate if need be. You can do many options, not just the standard two offered even in small cities in US. You can go for Brachy, Tulsa, Cryo, etc. These are all good options. All those other things people talk about with lots of verbiage are often used to push people to the standard two option, so unless there are really reasons, call around and get as many as possible appointments. Best advice is do it fast as it takes time to get in, you can always delay your procedure if need be, they can do those RP's anytime and anywhere in US. Many times you will have to travel to get the other options, well worth it. Don't bother just with some big name medical center, some big names offer standard two options that are offered in small cities, so don't just go for a big name, go where they are experts in more than two options. However, Mayo is a big name and they have it all, many options available though you have to get to the doctors with the other options so look up doc and ask for ones that do other things. I had Tulsa, and Cryo.