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SBRT or Prostatectomy? Mission Impossible

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Posted 7/17/2017 11:04 PM (GMT 0)
Hello,
Diagnosed two weeks ago in NYC. 57 years old- fit and active!
T1c - 5/17 positive biopsy- 3+4, <5% grade 4 in samples. No infiltration
Golden question. I saw SBRT option at MSKCC and surgeon. More confused than before. I Care more about urine and bowel complications than sexual functions, as they are with you 24/7.
One more question...if I select SBRT at MSKCC , does it matter which radiologist? Zelefsky is hard to reach- appointments sooo far away.
Posted 7/17/2017 11:21 PM (GMT 0)
Welcome to HW.

Yes, you should choose one.

No one can give a definitive answer to that. Generally I hear of fewer side effects from SBRT than surgery. I have no evidence to back that up.

The RO does matter, you want an experienced one, but your first choice might not be available in your timeframe. Others can give you better referrals at MSKCC.

Andrew
Posted 7/17/2017 11:26 PM (GMT 0)
Thanks...the radiologist I saw today at MSKCC sounded great, too young, but she was available almost readily lol
Do you think it's ok to insist on seeing Zelefsky after seeing his colleague?
John
Posted 7/17/2017 11:33 PM (GMT 0)
Your call. If you insist on Zelefsky, you could be waiting awhile.
Posted 7/17/2017 11:38 PM (GMT 0)

IgnoreIT said...
Thanks...the radiologist I saw today at MSKCC sounded great, too young, but she was available almost readily lol
Do you think it's ok to insist on seeing Zelefsky after seeing his colleague?
John

Definitely. It's like politics....it's not "Can it be done?"....it's...."How best to do this?"

If you were the Mayor of NY, Dr. Z would find time. He'll find time for you as well....just a matter of how...

Call 'em a lot..(so they can get to know you....w/out becoming a pain).....leave messages on his nurse's voicemail.....get a referral from your doc....drop names of people you know he's seen....use this forum with them....flatter, flatter, flatter
Posted 7/17/2017 11:38 PM (GMT 0)
we have such a similar disease profile...recovered quickly?
I'm more concerned more long term effects...what a confusing time
Hope I feel better when I decide
Posted 7/17/2017 11:41 PM (GMT 0)
I guess that's the way to do it...persistence
You're funny island time
I'll keep calling till they block my number lol
Posted 7/18/2017 12:22 AM (GMT 0)

IgnoreIT said...
Hello,
Diagnosed two weeks ago in NYC. 57 years old- fit and active!
T1c - 5/17 positive biopsy- 3+4, <5% grade 4 in samples. No infiltration
Golden question. I saw SBRT option at MSKCC and surgeon. More confused than before. I Care more about urine and bowel complications than sexual functions, as they are with you 24/7.
One more question...if I select SBRT at MSKCC , does it matter which radiologist? Zelefsky is hard to reach- appointments sooo far away.

Dr Alan Katz has done much of the pioneering work in SBRT. He is in the NYC area (Flushing?) but I don't know how busy he is.
/prostatecancerinfolink.net/2016/01/06/nine-year-outcomes-after-treatment-with-sbrt
Posted 7/18/2017 12:30 AM (GMT 0)
Well, the RO with the most experience is Alan Katz in Flushing. Not a very elegant space, I understand, but he is the highest volume SBRT RO in the world, I think, and he knows what he's doing. I heard he may be retiring soon, so you should get him while he's available. He's mentored several others in the NYC area, including Josephine Kang at Weill Cornell, and Jonathan Haas at Winthrop. I think they follow Katz's protocol.

Zach Zumsteg used to do the SBRT for Zelefsky (Zelefsky is originally a brachytherapy RO), but he left last year to work at Cedars-Sinai in LA. So whoever he has doing it at MSK is pretty new at it.
Posted 7/18/2017 12:35 AM (GMT 0)
Welcome to HealingWell. Sorry you have to be here.

Unless there's some reason to believe this is an urgent matter I'd go with the best doctor, timeframe be dammed. You only get one chance to do this. Do you really need to do it right away or are you just being antsy?

Also, have you considered brachytherapy? If not, you haven't done all your homework. I say this as someone who regrets not having done all his homework.

Good luck and good health.

Post Edited (Jazzman1) : 7/17/2017 6:38:58 PM (GMT-6)

Posted 7/18/2017 1:20 AM (GMT 0)
I'll call Katz tomorrow...hope I can get to see him soon
I'm leaning toward SBRT over RALP...stats are more convincing but what options are available after SBRT? I'm switching sides often..I'm still feeling lost in a sea of info.
Posted 7/18/2017 1:24 AM (GMT 0)
IgnoreIT - when I was diagnosed, I had a tough time getting into Zelefsky too. So I saw Dr Gewanter, who is the chief of RO at the MSKCC Long Island complex. He was terrific.
I ultimately chose surgery.

Two things to tell you though...
1. When I saw Gewanter, he told me that SBRT in his opinion was going to be a major mainstream primary treatment, but at that point ( 2 1/2 years ago) there wasn't enough history. So it just leaves me feeling that maybe MSKCC isn't the best place for SBRT. C;early they were not first movers. But who knows, maybe they've caught up.

2. I am now is a POSSIBLE recurrence situation, and while it's too early to call, I wanted a head start, and while I really like Dr. Gewanter, only Zelefsky is Zelefsky. So I called and found my way to his assistant, Bonnie. It took about 3 weeks to get him the slides and the records he required before making the appointment. Then once he got them, Bonnie called me and gave me an appointment 3 weeks later.

If you want to Email me, I'll send you her full name and contact info.
Posted 7/18/2017 3:28 AM (GMT 0)
IgnoreIT
I just had Zelefsky do my brachy last week. I originally saw another RO at MSK in NJ. Dr. Braunstein. We spoke about my options and with a GS9, my choice became brachy followed by SBRT. SHARP at MSK. I asked for Zelefsky to do my brachy and Dr. Braunstein contaced him and it was arranged. If you call his office, don't let Bonnie make you feel uneasy. She has the normal NYC accent but she is very responsive. Go on to MSK web site and look up Zelefsky for his contact info.
I tried to do my homework on all of this. I know its confusing with all the options and doctors. Which way to go, who to see, should I hurry. Make sure you take the time to be happy with your choice on doctor, procedure, hospital and timeframes. I went through the same issues. I was diagnosed in mid December 2016 and got my first ADT injections in March. I also saw a surgeon at MSK, and in my case he even recommended radiation. Zelefsky was my first choice, so even if you deal with another RO, there is no animosity towards you seeking out Zelefsky. As I said, I had the brachy done by Zelefsky and my radiation simulation will be done with him, but my SHARP is going to be done in NJ with Dr. Braunstein.
BTW........they work as a complete team at MSK in my experience. I believe Zelefsky is involved in most cases.
Good luck. If you need any info or have any questions you rather not discuss in the open, feel free to email me.

Dogdays
Posted 7/18/2017 1:14 PM (GMT 0)
Hi, IgnoreIT.
I, too, would recommend a thorough study of SBRT before looking at surgery. It is a personal decision, but with the 9-year (and soon 10-year) results of the research, it looked good to me.

You mention having a concern with potential urinary and bowel side effects of treatments. I did not have surgery, but I know of no one who did not have at least some urinary side effects from surgery. Only a few seem to have had any bowel effects. When it comes to radiation, I can mention my own experience. I had IBS for many years prior to SBRT, so we knew I was at higher than normal risk for bowel effects. I had them. . . but so far they only lasted a couple of months and then subsided - just as my RO said to expect. My only urinary side effect was a slightly weak stream, for which I took meds for about a month, and some urinary urgency, which only occurred over a couple of weeks.

Either way, remember it is your body and your life. Your doctors can advise you all they want, but only you should make your treatment decision.
Posted 7/18/2017 1:30 PM (GMT 0)
I wouldn't limit your radiation choices to just SBRT. My urologist at MD Anderson said "radiation is radiation" when I asked about the different varieties. My salvage radiation was IMRT at MD Anderson. If I was going to go the radiation route as first treatment, it would have been brachytherapy (seeds.)
Posted 7/18/2017 2:38 PM (GMT 0)
Just finished SBRT at Cleveland Clinic with Dr. Tendelcar. As we discussed options I heard the 'we' word again and again. In my limited opinion the large radiation centers use a team approach. There probably is very little difference between SBRT delivered by Zelefsky or one of his colleagues. For surgery or seeds you're buying the Dr. and not the institution. Take your time and do your home work it's a life time decision. I thank this forum for helping me make my decision. I'm two-three weeks following treatment without side effects. Just a data point of one.
Posted 7/18/2017 4:49 PM (GMT 0)
Thanks Terry...perfectly right smile it's a team approach
How was the SBRT treatment ? The after treatments side effects...
I know it's too early but just the days of the treatments...fatigue?etc
Thanks
Posted 7/18/2017 7:06 PM (GMT 0)
Just some minor burning when urinating that started following the third treatment. It resolved on it's own within two weeks with no meds taken. I had a bottle of Flo-max available but didn't need it. Also I had the urge to pee when riding a spinning bike problably due to some swelling in my prostate pushing up against my bladder. My CCF PA said don't worry about it and stay active doing anything I normally did unless I had pain. I typically ride 50-70 miles a week in a spinning class. That discomfort is gone as well and I maintained my active YMCA schedule during treatment. No fatigue and I drove each way to treatments 5 hour round trip. Erections and sex still fine. I finished up 6/24 and right now I feel 100%. The treatments were nothing and the placement of the gold markers almost nothing and easier and faster than the biopsy. Feel free to e-mail.
Posted 7/18/2017 10:29 PM (GMT 0)
Wow...you made my day ...really smile
Frankly worried and having travel plans to Europe and planning on enjoying life ...more before diagnosis which came as a slap to my upbeat outlook to enjoy my early retirement. How can I emai you?
Sorry but very new to this or any blog actually...amazing new tech world...learning and connecting smile
Enjoy your spinning ...
John
Posted 7/19/2017 10:59 AM (GMT 0)
IgnoreIT, to email another member, click on their name on the left side of the message, and you'll get their profile. If their email is visible on their profile, it's a hotlink.
Posted 7/19/2017 1:15 PM (GMT 0)
IgnoreIT - I had CyberKnife SBRT last year, finishing the day before Thanksgiving. I not only worked 5 days a week through treatment, but I also went to the gym every day, just as normal. I did feel a bit more tired by the end of the day, but not anywhere near a "profound fatigue" or anything that impacted my daily life.

about 3 weeks after my final treatment, my wife and I took a short trip out of state, and I had no problems there at all.

I did have a slower than usual urine stream for a few weeks, but my RO prescribed Flomax (one capsule daily) for that, and within just a few weeks, it resolved. I did have more intestinal and bowel issues than most patients, but that was due to a pre-existing condition, and we knew that I was at risk for it. Over the next few months, that, too, has resolved. I would say that at 6 months post-treatment, I am back to baseline.

One additional thing that has helped me is that my uro agreed to prescribe 5 mg Cialis for daily use. After the radiation, things "down there" got worse for me, and the daily meds have helped a lot.
Posted 7/20/2017 1:22 AM (GMT 0)
was just advised by Dr. Carter and Dr song at JHUH that I should have imrt. treatment. They said AS was definitely out. I want the best but I live in Fl. near the Cleveland clinic here. Has anyone heard of Dr.John Greskovich. He does the imrt there. I don't want to swap convenience over quality of treatment as Song is considered one of the top ROs in the country. Any suggestions w2ould be appreciated.
Posted 7/20/2017 3:49 AM (GMT 0)
IgnoreIT-

If you put SBRT in the search bar, you will find a bunch of us who have had SBRT and discussed their experience on HW. I had it in 2010.
Posted 7/20/2017 3:45 PM (GMT 0)
Hi IgnoreIT,

I just completed SBRT (CyberKnife) at Beth Israel last week (M-F). So far the only side-effects I have noticed is a burn when I pee. It seems to be already fading. It did not show up until the Saturday after treatment. At one point I asked the Doctor "how do I know the machine is doing anything since I feel nothing and there are no side-effects" (at that point). He assured me that that is a good thing.

On the bowels side of things everything seems to be normal and close to what I usually experience.

Now it is a matter of waiting for PSA nadir. I guess that can take up to 27 months. I have to do some more reading up on that though.

Good luck in whatever choice you make!

Thank you,
Tim
Posted 7/20/2017 4:56 PM (GMT 0)
melalt: CC down is is ok, but do yourself a favor and call Dr. Matthrew Abramowitz of the University of Miami in Deerfield Beach.
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