Having an appointment with Alan Katz for SBRT... Im considering him seriously.
Doc I saw at mskcc didn't convince me.
Any feedback on Katz? Mskcc is as everyone knows #1... but I'm not letting reputation override my calculated choice. Your feedback will help me a lot.
If you have done SBRT... please tell me your side effects severity and recovery period ... I appreciate your help
Thanks
Alan Katz has more experience with SBRT than anyone in the world, I think. His location in Flushing is pretty ratty, I hear, but don't let that fool you. And he is a character - tells a lot of corny jokes, so he doesn't have the gravitas of Zelefsky. He has also done more follow-up research than anyone - his 10-yr follow-up should be out this year (ask him about it). I love the guy.
I had SBRT 7 years ago. I had some mild irritative symptoms (had to pee often, blood spot on tissue paper) that started 10 days after treatment and lasted for about a week. I took Flomax for the urinary symptoms. Then I had a return of the urinary irritation a year later - took Rapaflo- and it disappeared. Since then, no symptoms. Absolutely no ED (that was my main concern). Cum dried up, though 
I know some guys who even kept the cum after SBRT.
Allen
I retired at 55 to travel and relax ... in your opinion, symptoms are severe enough to sit and wait or I'll be able to go ahead and resume my plans... i won't be climbing Mount Everest lol... just plain travel and experiences. Sex? Of course it's important, but I'm ready to maybe accept the consequences... c'est la vie! Actually, Im going ahead with my European trip in August and do treatments in October. Mskcc doc told me it won't impact outcome most likely. I'm glad you're not having SE after the couple of short periods. I'm hopeful 
Have a great evening Allen.
John
Just bring some flomax or rapaflo with you. You should be fine. It's like getting a sunburn inside. Doesn't cause ED for 80% It was less than anything I imagined.
Hi,
I saw Dr. Katz... a nice guy... we talked a lot about so many things other than cancer. A very descent guy. Two choices: flushing or Sloan
Thinking
Thanks for the heads up
John
Allen
I asked Dr. Katz about the 10 years data. He told me that it's the same ... looks good... no change.
Good day
Hello Confusing007,
Sorry I didn't see this earlier; I've been traveling in Europe and just got home yesterday. I hope my answer isn't too late.
I can speak personally about Alan Katz, having been treated with Cyberknife by him in 2014 at his clinic in Flushing. What Tall_Allen writes is absolutely true: When I first saw the clinic I started to have second thoughts. It's not bright and shiny and has a bit of a third-world feel to it (and the neighborhood it's in makes you think you're in Hong Kong or somewhere similar). And Alan definitely is a character; he doesn't come across as so self-important, the way other doctors do, and he has a keen sense of humor, which is one of the things I really liked about him. But he was one of the people who first developed the Cyberknife, and his statistics were impressive enough to convince me. And, because he and I are the same age, same demographic, and grew up literally a few blocks from one another (though I didn't know him then), I formed a bond that made it easy for me to relax around him.
Even before treatments, I peed excessively (20 times a day on average). Immediately after treatments, I was peeing every 15 or 20 minutes, and it was accompanied by a lot of burning. (Dr. Katz put me on a steroid for this.) This lasted about 3 weeks, and then subsided. I was also pretty tired for a couple of weeks after treatments, but that may have been due more to the emotional drain of dealing with cancer than with the actual effect of the radiation. I'd say that within 4 to 5 weeks after treatments, I was more or less back to myself. Throughout this time, and even months later, Dr. Katz was always very responsive to phone calls and emails, which was great.
My one disappointment, now that I'm 3 years out, is that my PSA level still hasn't dropped below 1 (it was almost 5 when I was diagnosed), because I was expecting that by now it would have dropped more. But I'm tracking my numbers on a graph, and it's definitely headed in the right direction.
As for sex, I'm lucky that I'm still pretty functional (get erections and even have some cum when I come!, though not nearly as much or as powerful as before, but then I am 65, so I'm not complaining!). I've had a few symptoms on and off in the past year or so -- blood in my urine, and an intense burning after ejaculating -- that my urologist attributes to long-term side effects from radiation. I have read that some side effects can show up years later, so I guess it's all grist for the mill. (Both of those symptoms have now disappeared.)
If there's anything else you would like to ask, I'm happy to answer.
Good luck with whatever you decide to do!
Hello,
Hope you enjoyed Europe. I always do
You're right about the place. Not appealing and I was alone in the clinic which cast some questions. Then, a guy came in screaming about a certain injection that wasn't approved etc, but Dr. Katz was very patient and responded to his needs.
I had my consultation for nearly an hour, but we talked more about politics, travel and You name it. A very down-to-earth guy. Last week, I was at Sloan and i was equally impressed and i had a close member treated there and I know the professionalism at its highest level. Sloan claim that they have one of the highest rate of response in the nation.
I'm seeing the people at Sloan one more time before I make my decision. Very frankly, I'm wondering which center has a newer version of the machines and whether this makes s difference. I don't know if I will know the truth. Anyway, a few days and I must come up with a verdict. Help me God lol
Very happy you're healthy and enjoying life.
Take Care
John
I can help with the machine part... MSK uses a VMAT linac - rotating arms that very quickly deliver the radiation in an arc. It lines up the fiducials before each half arc and then sprays the Xrays quickly before any organs can move around (it's what I was treated with in 2010). Katz uses CyberKnife at his Flushing location - a little robot that lines up the fiducials before each point-and-shoot. They are two approaches to the same issue (intra-fractional organ motion) and they both deliver X-rays with submillimeter accuracy (which is important when there are only 5 treatments). I don't think it makes much difference.
What does make a difference is the experience of the RO and physicist, the care they take with the plan, especially how well they are able to achieve the dose constraints they set.
If you see Dr Katz again, please tell him that Allen E. wants his PUBLISHED 10-yr outcomes (I know they're no different from the 9-yr), so I can say that the SBRT length of follow-up is as long as the longest follow-up on an IMRT study (at MSK). I want him to have the bragging rights.
Schwann240- It took me 4 years for my PSA to get below 1. Now, at 6 years it is 0.1. There is a correlation between slower achievement of PSA nadir and more lasting cure. Bounces are also a good sign.
Hello,
Finally the decision is made
Zelefsky at Sloan !
It was so hard to see him but finally succeeded! I felt comfortable and I think both Katz and Zelefsky have the same caliber ... (i hope).
Thanks Allen
You're in excellent hands. What dose is he using now? I know he's been doing an SBRT dose escalation study. BTW_ did you ever meet with Jonathan Coleman at MSK about focal ablation?
Correction: MRI showed confinement
Clear vesicles
No lymph infiltration
I had also met with Zelefsky and was impressed with him (though in the end I went with Katz). I think you'll be getting great care. It's such a hard decision to make, but I hope that you're NOT like me and that once you make a decision, you're firmly behind it. (I always second guess myself on just about everything!)
Best of luck!
Lol
Sometimes I am
But this time got tired of being confused... both are great Now Luck is the name of the game
John
My appt with Zelefsky is on the 3rd to finalize the plan. I'm glad that I selected him over the unknown one at mskcc- your advice
I have also two 3+3 lesions on right side... I think I'm going ahead with total sbrt. What do you think?
One little issue I didn't mention is my lower back pain.. two docs told me to ignore since it's been with me for ages... still concerned though. They told me my PSA is under 10 and MRI didn't showed confinement. My alkaline phosphate is low as well.
Rocky period!
Great day to you
The only kind of SBRT they do is whole gland. I thought you were looking into focal ablation therapies (e.g., cryo, HIFU, etc.) at one point.
I can't tell you how common it is for men like us (who have PC) to think that every pain is a metastasis. I've worried about that myself - even now as I sit here typing and feel a pain in my hip, such thoughts enter my head. I've learned to gently laugh at myself and let those thoughts and feelings go. Your two docs are right - with your stats, it is almost impossible. And "poking at it" will only increase the anxiety you feel.
Lol
You're perfectly right ... actually I had an X-ray last year trying to figure out the cause of pain... been having it for years...mild L4/5 degeneration and arthritis ...way back, had a car accident and broke by hip at several locations and my spine was impacted. That was ages ago, but I hear things can show up "one day". For partial ablation, I saw Dr. Eldai at mskcc who refused taking me for the HIFU trial and told me that it's best to address it systemically. I was offered hemi-ablation at Cornell but Dr. Hi warned me that I must do rigourous tests after the hemi ablation including serial biopsies etc. I decided to get a radical approach and hope for the cure (fingers-crossed ) lol
With T1c I hope to be fine
John
IBRT/SBRT Radiation and ADT
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