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Go with local prostectomy surgeon or pursue big center 2.5 hours away

Posted by fritzo @fritzo, Feb 8 8:18pm

Hi everyone,

I need radical prostatectomy (Gleason 3+4=7, Stage IIB). The good news is that it is contained to the prostate with no spread.

I have a local urologist who has done 100 robotic nerve-sparing procedures (he also does kidney and other surgery). He was trained at a center and now does one or two prostatectomy surgeries a month.

Should I see if I can qualify for a large surgery center 2 1/2 hours away in Chicago at Northwestern?

My surgery time currently will likely be in two months. I'm guessing it will take time to be set up as a patient at the center and surgery might be delayed even more.

Are the benefits of a big center worth perhaps an even longer delay?
Just wondering everyone's thoughts? Thanks for your help!

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cstrutt52 | @cstrutt52 | Feb 12 11:20am

Your local guy may be top notch BUT go to the big shop. You are looking for a whole TEAM to get you through it. I traveled 3.5 hours for my HDR brachytherapy at Mayo Rochester (two of them a week apart). I also went there for an ablation. All of those sad stories and downsides you read and hear about happen at local clinics. In both of my procedures I had zero pain and zero bad results. Admittedly, Mayo Rochester is the #1 hospital in the U.S. (overall) and the entire staff is amazing, literally, from the janitor in the lobby to the nurses and doctors, but any large hospital that is known for your procedure will have the entire staff working to care for you. In the case or Rochester, the whole city cares for you. Go to a hotel or a restaurant and everyone knows that one in the party is there for treatment. Kindness and caring abound. The locals know they ultimately work for what they refer to as "Mother Mayo". My advice, go big. You've decided on surgery. I appreciate the joking choice between Erect or erect but, for me, the downsides of a life with ED, incontinence, etc. was an easy choice for HDR.

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wwsmith | @wwsmith | Feb 12 12:01pm
In reply to @climateguy "The RO happens to be "Chief of Brachytherapy Program". The current tentative treatment proposal is one..." + (show)
Profile picture for climateguy @climateguy

The RO happens to be "Chief of Brachytherapy Program". The current tentative treatment proposal is one session of HDR, followed by either 5 or 20 sessions of EBRT depending on the random selection in a study he's running, with either 1 year or 2 years of ADT. He wants a better idea of exactly what is going on with my urinary symptoms so he's scheduled some tests and imaging.

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@climateguy I almost got into one of those trials where they were testing SBRT in place of the 20 sessions of IMRT for the wide area pelvic treatment. Theoretically, SBRT can be programmed to perform like low dosage IMRT but there have been problems with high toxicity in making that work. My advice is to use HDR Brachytherapy as a boost to the prostate and use IMRT for the wide area pelvic treatment. See more details on that here https://www.inspire.com/m/williamwattsmith/about/

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Profile picture for fritzo
fritzo | @fritzo | Feb 12 12:20pm
In reply to @cstrutt52 "Your local guy may be top notch BUT go to the big shop. You are looking..." + (show)
Profile picture for cstrutt52 @cstrutt52

Your local guy may be top notch BUT go to the big shop. You are looking for a whole TEAM to get you through it. I traveled 3.5 hours for my HDR brachytherapy at Mayo Rochester (two of them a week apart). I also went there for an ablation. All of those sad stories and downsides you read and hear about happen at local clinics. In both of my procedures I had zero pain and zero bad results. Admittedly, Mayo Rochester is the #1 hospital in the U.S. (overall) and the entire staff is amazing, literally, from the janitor in the lobby to the nurses and doctors, but any large hospital that is known for your procedure will have the entire staff working to care for you. In the case or Rochester, the whole city cares for you. Go to a hotel or a restaurant and everyone knows that one in the party is there for treatment. Kindness and caring abound. The locals know they ultimately work for what they refer to as "Mother Mayo". My advice, go big. You've decided on surgery. I appreciate the joking choice between Erect or erect but, for me, the downsides of a life with ED, incontinence, etc. was an easy choice for HDR.

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@cstrutt52
Well-I hadn't thought about the radiation side of going big. And, I used to live not to far from Rochester (Corning), so that's amazing about all the support in the community.

My Decipher score came back high (6.1) yesterday, which would mean radiation plus hormone therapy. That makes me think that I should live with the side effects of surgery in order to cut the agressive cancer out and then have radiation as a recurrence treatment option down the road. I am so glad your case went so well!

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rlpostrp | @rlpostrp | Feb 13 12:44pm
In reply to @airportone "22 years ago at age 54 I was diagnosed with 4+3. I was in a dilemma..." + (show)
Profile picture for airportone @airportone

22 years ago at age 54 I was diagnosed with 4+3. I was in a dilemma as local urologist wanted to do surgery. My GP advised " go where they do this day in, day out". I did. I had robotic surgery by a doctor who has done probably thousands, followed by radiation. Despite a concern about possible spread to bone, I didn't have a return of PSA for 6 years. For the last 16 years periodic shots of Lupron. I do have side effects but still I am alive!
I was able to raise my family.
Thank the good Lord and a doctor's skill.

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@airportone Congratulations! Yours is the type story that we all want to hear, save for the proctitis. You give us all hope - Thank You!

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