I'm a patient at MSK in NY, though I live in CT. Am an active healthy 80 yr old who is still working and runs on a treadmill 2-3 miles a day. Briefly, have been on active surveillance since Fall, 2019 with periodic MRIs, biopsies (Gleason 6), etc. Also have BPH (last MRI 95cc). Last Spring PSA started skyrocketing - last test this past Oct, 39.19. Had MRI this past Oct, then Gallium-68 PSMA PET scan in Nov, followed by biopsy in Dec. Finding was a 2cm anterior lesion GG3, no metastases, with possible ECE. Gleason 4+3. Referred for focal therapy for Dr. Ehdaie (MSK) for cryoablation at MSK, and for RT. Ehdaie recommended focal but my call. I have met both docs. Dr. Fainberg for focal and Dr. Mychalczak for RT+hormone therapy. Also just got 2nd opinion from Dr. Herbert Lepor at NYU Langone. He thinks I'm a good candidate for cryoablation. Have to decide: (1) ablation vs. RT+hormone treatment and, (2) if I go with focal, have to decide which doc to choose, Fainberg at MSK, or Lepor at Langone. If anyone has experience with having to make this decision I would appreciate hearing about your experience. And if anyone has experience with either of these two docs I love to hear about it. Thanks so much.
Focal therapy ?: I'm a patient at MSK... - Prostate Cancer N...
Focal therapy ?
There is good evidence that focal cryoablation, indeed any kind of thermal ablation, focal or whole gland, doesn't work. Read this:
prostatecancer.news/2016/12...
Thank you for your reply and the link to this 2016 report. It's important information to take into consideration. I am not an expert and have only a beginning knowledge and, I imagine like everyone, am overwhelmed with the learning curve and the fateful decisions that have to be made about the quality of my life. Everyday, and with everyone I speak with, I am learning something new about this disease. For instance, at NYU Langone they have performed over 500 focal procedures and just had their 5 yr outcome paper accepted as a major plenary at the upcoming AUA meeting. I understand they have never admitted a patient for a urologic indication. I've been told, there have been no rectal complications and no patients have reported developing incontinence. I have also been told BPH symptoms typically improve. At 5 yrs, 88% of men have not undergone radical or radiation therapy. If the disease recurs, they do salvage radiation. As I said, I am at a crossroads.
My article was begun in 2016 but is up to date. Read it. Hospitals hide the problems. Become an empowered patient.
Thank you again. What you wrote is important information to consider. If it is up-to-date, do you mind if I forward it to the focal docs at MSK and NYU Langone? To be at the crossroads seems to me to be, as you say, an empowered patient - but maybe you could clarify how you mean that phrase. I feel in the middle of the opposing forces pulling me apart, and of course, it is especially hard on family members and friends who love you and only want the best for you to see me feeling so relativized. For instance, I am familiar with your allegation about hospitals and have some understanding of the uses made of statistical research in studies as well as for publications in scientific journals. I have come across similar kinds of reports, as I'm sure you and others have, about the so-called statistical evidence for RP and RT as well. Maybe it's all about taking a "controlled risk" after all is said an done? Thanks again. Much appreciated.
Feel free to forward it.
I have 20 years of background in dealing with statistics and research methods, and there is still much I am hazy on. Patients can only be empowered to ask good questions, not to answer them. In my experience, most doctors want to get it right, but are human and have the same cognitive biases we are all prone to.
I appreciate your inclusive response. Selfishly, I wish you weren't hazy so that I, and the many others like me, could find a safe harbor. Having the information to be able to even formulate a good question is a seemingly overwhelming task. I, too, believe that most doctors want to get it right. Recognizing unconscious bias is my background. Your contribution is valuable in helping to avoid the pitfalls of jumping to a conclusion onto one side or the another prematurely. Thanks for helping in that journey.
I'm comfortable with frequentist statistics, but I rely on experts when Baysian priors are involved.
If you decide to do Cryo, make sure the procedure is a 3(triple) Freeze Application with Passive Thaw between freezing's and NOT DOUBLE FREEZE. (not as effective and widely used)
Dr. Gary Onik, (Ft. Lauderdale - FL.) has 30+ years of innovating Cryo techniques . His 3D-PMB (3 Dimension - Prostate MAPPING Biopsy) is extremely accurate for boundary location.
Did I read that he coached another Doc as that other Doc performed that treatment on Onik for his own PCa? He does whole gland for many men, or strictly focal?
It was Dr. Onik's own metastatic Immunotherapy Protocol he created that he guided his friend to perform on himself while on a Spinal
He does Cryo and/or IRE after his 3D - Prostate Mapping Biopsy determines the required extent of treatment needed.
Ah yes. He didn't discover his cancer until metastatic.....which made me wonder...was he having regular PSA tests??????????????????????? Like when I asked our GP if she had any problem with her own colonoscopy...she was old enuf!! She admitted hadn't had one!!!!
Like the *Cobbler who has holes in his shoes* 😉
I guess he may have been unlucky and just had a super aggressive PCa ?
I see Dr. O. in 2 weeks and maybe I'll ask him. I'm thinking just another asymptomatic situation for him.
wonder if he would admit...if he skipped one or more annual PSA tests?
Sounds like you are almost buddies with him?
Thank you for this information. Much appreciated. I will look into it. It's new to me. I don't even understand the terms. Is there anything to read about this?
look into Dr Tim McClure at Weill Cornell in NYC. He does IRE focal ablation combined with MRI guided SBRT.
He has been doing IRE for more than 3 years and probably has done the most of any doctor
He has a clinical trail (RTIRE) that is recruiting now NCT05345444
Thanks so much for his name. I will look him up. I'm afraid I don't know how to find the clinical trial you noted. Is there a website where one can look into this?
Piano777 Piano777 wrote -- " look into Dr Tim McClure at Weill Cornell in NYC. He does IRE focal ablation combined with MRI guided SBRT. He has been doing IRE for more than 3 years and probably has done the most of any doctor... "
Just a FYI when it comes to experience -- Dr. Onik's involvement dates back to 2007 when applying IRE as a modality for treatment.
clinicaltrials.gov/study/NC...
clinicaltrials.gov/study/NC...
clinicaltrials.gov/study/NC...
IRE is a better form of focal ablation as they can more precisely control the field that is affected. Cell dies a natural death through the holes in the cell walls. The challenge with cryo and heat related ablations is they can still damage adjacent areas due to less control over the treated area.
Combining IRE and MRgSBRT allows Dr McClure to use less radiation for the SBRT.
MRgSBRT is real time MRI guidance that turns off the radiation beam if the targeted tissue moves (meaning important tissue would have been radiated with higher doses)
Dr. McClure is an expert in both IRE and MRgSBRT so you would be in good hands whichever way you decided to go.
You might find this December 2023 paper by Johns Hopkins interesting as it indicates focal ablation has come a long way from the earlier days.
hopkinsmedicine.org/news/ar...
Thanks so much. Really appreciate this link. Jonathan Fainberg (MSK) told me Arvin George was a close colleague when I asked about getting a 2nd opinion at JH. Decided to go to Herbert Lepor at NYU Langone for 2nd opinion instead just to try to get out of the same circle.
Here is a good website to compare odds of cure for the major treatment paths. You have to determine your stage, low risk, intermediate, or high risk (risk of recurrence). So if you are intermediate, pull up the intermediate chart and you can see the odds of 10-20 yr survival, etc. based on the treatment you pick.
prostatecancerfree.org/comp...
It is best viewed on computer or just print it on paper. Not so viewable on phone.
To make the graphs easier to read, i drew a dot on the endpoints of the elipses, and then drew a line through the dots. This turns the elipses into lines.
Also be aware the the graphs don’t show any salvage radiation benefit. This would boost the surgery odds up a bit.
Also beware, this is a very dysfunctional industry from my view. Loads of bad info mixed in with the good info. Same with the docs. Some of them are more dangerous than the cancer.
Radiation, Focal or Removal?
Use hormone therapy or not with Proton therapy
Just getting started
