So hard to study focal therapy
Right now it is super hard to find a doctor willing to do focal therapy, or information about it, or almost anything really. There seems widespread condemning rather than objectivity. There is also rampant over-classification of what is serious versus something that could have a focal therapy. Such as a tiny 4+3 or 4+4 cleared by PSMA scans, is often eliminated when the total volume of 4 might be less than most 3+4 that have been around awhile. See my discussion on that here: https://connect.mayoclinic.org/discussion/why-is-volume-of-the-cancer-not-used/.
This to me is just more over classification, something like pathology biopsy are sometimes over classified so that pathologist cover their arse or never under-estimate since it is potential lawsuit territory (why Epstein at JHU was popular for second opinions till he left).
See photo from recent ANCAN talk on "is focal therapy right for you". Look how many focal therapy there are. One rarely sees anyone mentioning any of them, if they do on some lists there is lots of condemning, one also can't find even doctors that do them because it is so almost "hidden". Even Mayo has docs that do a few focal therapy on that list, but you wouldn't know it as some are interventional radiologists and are not mentioned most prostate places/websites or discussions. I think the whole field of focal therapy needs to turn around, including discussions. All the treatments have issues and problems, but the worst problem is a vacuum of info on focal therapies since there are many now. But finding info or doctors is just about impossible. Not actually asking any question here as I may have my own treatment plan soon (Tulsa or Proton but we will see as anything possible still), but this has been a hard process to find info, doctors, help on anything but radiation therapy or RP.
Interested in more discussions like this? Go to the Prostate Cancer Support Group.
..and then we have the insurance debacle....
I guess we really have to be our own advocates but this is very hard to navigate. My urologist, one of the better ones in my area, well, let's just say I'm a bit shocked at what he's said / did / prescribed vs what I've learned....
Well done Spine. Well said, indeed. Bravo! I'm especially fond of the 3 p's.
Whoops, a mistype. Spino.
Where are you? I'm being treated at Mayo Scottsdale.
Focal Thherapy is bigger in the UK , Canada , the EU and Australian than in the USA .
For example NanoKnife is rarely mentioned in the USA . Toronto Canada has several sources performing NanoKnife .
I just completed my focal therapy treatment at Mayo Rochester............TULSA-PRO. It was done by an interventional radiologist because they are experts in targeting. There may be a numerous forms of focal therapy, but to me it boils down to this. Precision is the key to success in this treatment I believe and in-bore MRI imaging in real time during the procedure is the highest form of precision available for this type of treatment whether it be HIFU or cryo. I'd rule out everything else if it isn't in-bore MRI imaging based guidance. PCRI.org has some excellent video presentations on focal therapy.
My local Dr. told me I needed either radical surgery or multiple radiation treatments with no other options offered. I researched and found TULSA PRO. The nearest facility doing the treatment is over 3 hrs. away. I have visited Dr. Stratton at OU Stephenson Cancer Center and he told me I'm a good candidate for TULSA PRO. I'm waiting for them to schedule me for treatment. It is difficult because I don't have symptoms just rising PSA.
I don't know how this thread became active after being inactive so long, but I decided what to do more than a year ago myself. Dr Scionti, Sarasota, FL did my Tulsa Pro. Read my experience here
https://connect.mayoclinic.org/discussion/tulsa-pro-initial-experience/
There is another thread of somebody who got it at Mayo, but they didn't have it till this year so they have less experience with it than Scionti.
I'm also especially fond of the 3 p's ;-). (poop, piss, passion) It's hard to say which I'm more fond of.... I am northeast of you, in Colorado. After exploring a clinical trial (for ablation using embedded seeds of iron that could be heated precisely with electromagnetic fields) more advanced cancer was found and I had RALP (radical prostatectomy) from which I'm recovering so far with no further treatment at 2.6 years out.