Am I a Candidate for FLA? Surgery in 3 Days!!!

There is another prostate cancer forum where there is a long, long running thread about FLA.

Don't know if I can cite a competing forum on HW, but you could find it by googling "prostate inspire".

Nick, I don't have much personal info about FLA but perhaps others will comment on that. I WILL say that if you are not 100% sure about going for the surgery then you should consider canceling it. This is a key life decision and you need to be VERY sure about what you choose.

With your stats it's not clear that hormone therapy is a must with radiation. Have you consulted with the various radiation experts in HDR Brachy, LDR Brachy and SBRT? If not, that is due diligence that you should do before undergoing any treatment. Also, I assume (?) you got a second expert opinion on your biopsy pathology from someone like Dr. Epstein. If not, that's another step you should take before treatment.

Jim

Thanks for your responses. I had seen one RO, he owns the Chicago area's largest Brachy clinic, said I was a candidate (although three urologists said No), but I had to take his counsel with a grain of salt because he owns the place, and it is very marketing driven. The day I was there they had a video crew recording patients for their YouTube channel giving happy testimonials, which means nothing to me, it's just anecdotal. I asked, and they sent, about 5 "studies" but they were not of the level of a JAMA, New England Journal or NIH level of quality. One was old, another seemed to cite small medical operations (No Mayo, Cleveland Clinic, Hopkins, level of hospitals) so the studies meant nothing. I was told that I would need hormone therapy with it by the RO.

So...from a diabetes point of view, hormone therapy is a problem and also because I have an enlarged heart (dilated cardiomyopathy), and the three urologists (two are heavy hitters on the top of the Chicago surgical food chain), said I would need hormone therapy also if I went the radiology route. That left me to research Proton and I ruled that out. I called the local Proton center and they are heavily marketing driven and I couldn't find any real, long term studies.

Also, I already have a urinary issue and all three urologists told me that radiation's side effects regarding that would be worse than surgery and lastly, with radiation there is a 5-10% chance of very bad, permanent, bowel problems. The only thing worse than dying from PC would be not being able to control my bowels in public or on a job!

Just yesterday I gave FLA a second look since that, to me, was all that was left besides surgery. Several guys mentioned that they were rejected for FLA because they were 4+3, as I am. Since I am going to the Univ of Chicago I see that they were involved with several trials re: FLA. They have the most PC clinical trials in the Chicago area, which I find comforting, and that got me into this new study of MRI tomorrow. When I researched it this morning I learned it is related to FLA so that got me thinking. I also spoke on the phone to a brother from this forum in Atlanta and he is considering it. The uncomfortable issue is there are no long term real studies, just anecdotal and marketing PR.

I will call Arica Hirsch at Advocate Lutheran tomorrow.

Nobody is "pressuring" me to do surgery, even the three surgeons laid out what was available with the radiation route. I just feel I have ruled out everything else due to factors most guys on this forum don't need to consider. As to the $20K cost, I can handle that, in fact I can put it on my business as a Type S corp, but I learned I might need follow up(s) FLAs and I couldn't keep up paying that. I was turned off when I read here of the high pressure sales tactics of a famous FLA clinic.

Hopefully I will learn tomorrow about me and FLA, if I am accepted I can cancel surgery, contact Blue Cross. If not, I will steel myself for the surgery.

Many thanks!

Nick

Tudpock18 said...
Nick, I don't have much personal info about FLA but perhaps others will comment on that. I WILL say that if you are not 100% sure about going for the surgery then you should consider canceling it. This is a key life decision and you need to be VERY sure about what you choose...................

Jim

100% agree.

I forgot to mention, although Epstein downgraded me to a 4+3, I was originally scored a Gleason 8 (4+4). When I expressed how elated I was to be a 7, I was unfortunately informed that I was "so borderline", that I would be considered an 8 in terms of treatment options.

This has had a depressing effect when I use the online nomograms and other calculators as to the cancer spreading, mortality, etc. So I will consider my request for FLA eligibility at the Univ of Chicago to be my Hail Mary pass. I don't want to go "doctor shopping" until I find a FLA facility willing to "accept me", I need a tried and true treatment.

I just read many dozens of FLA success stories sent to me by a buddy here on Inspire and most seem to be below the 4 + a High 3 score.

Nick

<<<Nobody is "pressuring" me to do surgery, even the three surgeons laid out what was available with the radiation route. I just feel I have ruled out everything else due to factors most guys on this forum don't need to consider>>>

I was in the same frame of mind as you, Nick, with several serious compelling factors.

After shaking the tree hard for all other options for a year, right till the day before surgery, I went with my scheduled RALP. Some fine people here helped me, and I got to speak to a lot of compassionate doctors, primarily RO's. Most told me to go with surgery.

In in end it came down to what I expected all along. I sit here now, a few days post surgery, with no regrets.

Whatever you decide, don't have either regrets or cold feet. Good luck!