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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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Otto Korrect: ProstatID not ProstID
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1 Reaction...it reminds me of the nuances of PSMA PET/CT. Some people have rising PSAs with negative 'scans'. Although 90% of prostate cancer are PSMA 10% are not. They may show up on previous technologies, e.g., Axumin. Mayo HQ in Rochester has a unique imaging tool using choline. BTW: I recently read a comment that there is a service which does an AI read on MRI images called ProstID. I don't know more about it,
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1 ReactionFlomax is an alpha blocker, not the same as finasteride.
Some alpha blocker have less side effects but are less powerful in some cases anyway. If you have side effects from flomax, switch to alfuzosin, just slightly less powerful, but way less side effects.
Drugs like finasteride and dutasteride reduce DHT, which only in theory causes BPH to stop. But they have real problems, if not at the start in the long term.
Here is some AI
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Alpha blockers, used to treat benign prostatic hyperplasia (BPH), work by relaxing the smooth muscle in the prostate and bladder neck. This relaxation improves urine flow by reducing the constriction caused by the enlarged prostate. They do not shrink the prostate, but rather alleviate symptoms by facilitating easier urination.
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Finasteride (and more powerful dutasteride) is a type of medicine known as a 5-alpha reductase inhibitor.
Here's how it works on the prostate:
Inhibits 5-alpha reductase: Finasteride works by blocking the activity of the enzyme 5-alpha reductase.
Reduces DHT production: This enzyme is responsible for converting testosterone, a male sex hormone, into dihydrotestosterone (DHT). DHT is considered the primary androgen driving the growth of the prostate.
Shrinks the prostate: By preventing the conversion of testosterone to DHT, finasteride effectively lowers DHT levels in the prostate. This reduction in DHT leads to a decrease in prostate size, addressing issues like benign prostatic hyperplasia (BPH) or enlarged prostate. In fact, finasteride can reduce prostate volume by approximately 20% to 30%.
Alleviates BPH symptoms: This reduction in prostate size can alleviate symptoms associated with BPH, such as frequent urination, difficulty urinating, or a feeling that the bladder isn't completely empty after urination.
In essence, finasteride targets the hormonal pathway responsible for prostate growth, making it a key treatment option for conditions like BPH and even showing potential in prostate cancer prevention
What bad Symptons happen with FloMax?
By IRE do you mean the NanoKnife procedure? NanoKnife is an excellent procedure for focal therapy, and one I considered. But I grew an additional tumor and figured I would do a full ablation.
As for the biopsy, try to get a Transperineal Prostate Biopsy. You will be sedated, the entire prostate can be sampled; there is no rectal damage, no rectal bleeding, no rectal infection, and nearly no chance of a prostate infection from the procedure. Virtually no pain afterwards, you will have blood in your semen for several weeks, and probably no blood in your urine.
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1 ReactionThank you for the information. I'm hopeful the IRE will work for me. Getting a new biopsy in two weeks. Fingers crossed.
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2 ReactionsI visited Texas Prostate in Dallas, Texas, and met with Dr. James Cochran. They are a private practice, and when I went, they did not take Medicare, so it was out of pocket for me. Take a look at WellSpan in York, PA... wellspan.org. They have done over 50 procedures by now, and the only reason I did not go there and have it covered by insurance is that I have no family to care for me after the procedure. I offered to hire a nurse practitioner, but they declined the offer. I am still bitter about that and consider them to be clowns. However, they appear to be competent with TULSA, so that is the only reason I would recommend them for anything. I hired an NP in Dallas for nursing care. Being fully mobile after the procedure, I did not require any nursing care afterwards, per se; however, it was helpful to have the nurse explain catheter care and its use. She was excellent and worth every penny, as she also helped me with travel and a few other matters. If you are married or have someone to help you, that is great. You will find that the after-procedure pain will be zero for most people; it was zero for me.
Calcifications can be an issue, but my understanding was that they could be worked around in some cases or could be removed with another procedure. I had one small calcification that was not an issue. Has your local urologist discussed the calcifications and any procedure that can remove them?
As for side effects, well, I had a total ablation, and my only side effect is dry ejaculation. At 69, I do miss that, but I also have no intentions of fathering children. The trade-off is being cancer-free. Every procedure for prostate cancer has some level of adverse events; the question is, "What can you live with?" I have minimal ED, due to low T, my Uro and I are waiting to see if my T increases; if not, then we will discuss treatment for that. I take 5mg of Cialis daily to encourage blood flow to the penile tissue. This morning, I woke up with a nice, hard erection.
Did Mayo give you a list of adverse events and tell you why those events would be worse than having cancer return if you did a focal therapy? You may have a prostate that is too large for current treatment standards, or perhaps for other reasons. I find it odd that 'side effects' from a complete ablation are the reason not to have the procedure.
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1 ReactionThanks for posting. Where did you get Tulsa Pro? I went to Mayo Jacksonville and was turned away due to small calcium deposits. The Dr also said he wouldn't do total ablation, which I wanted, due to side effects risk.
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1 ReactionLate to reply....I had the TULSA procedure, and as I understand it, if the cancer has not spread out of the prostatic capsule, you are generally a candidate for TULSA. Some doctors have their limitations and preferences regarding the size of the prostate, and perhaps the proximity of cancer to some structures, so you need to visit Profoundmedical.com and look for doctors who specialize in TULSA, and ask them. Heavy calcification in the gland can be an issue, but I believe it can be addressed before TULSA. In some cases, if the cancer is not near the calcification, there are usually no issues.
UROs who do not do TULSA but other procedures are probably not the best people to ask about TULSA. Find a doctor who does TULSA and arrange a telemedicine or Zoom meeting if they are not nearby.
Good luck with whatever path you take. I had a TULSA in February, and my PSA in June was 0.10, so I am quite pleased with TULSA. I had a total ablation as I did not want to deal with this again in the future. My local URO said I made the right decision, as partial ablations using focal type therapies often result in the patient having to deal with cancer at a later date.
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1 ReactionJust let you all folks know, I had prostatic artery embolization (PAE) 9 days ago. It is an easy procedure, no catheter needed. Should reduce my prostate back to reasonable size again, since the Tulsa pro didn't fully take care of the BPH. Hoping all stays well from here.
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