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Posted 6/3/2015 12:18 PM (GMT 0)
I was diagnosed with PC last week. 48 years old, Gleason was 7 (3+4 I believe if that is better than 4+3), PSA was 3.3 when I had a prostate infection in January, primary care cleared that up with antibiotics, had some blood in urine in March (never happened before), lasted a few days, went away has not returned. Primary care sent me for a CT, showed no kidney stones, off to urologist, had camera check out bladder, normal, another PSA test, 3.29 this time, told I had a 20% chance of cancer, had the biopsy, cancer in 3 of 12 samples. Prostrate was measured at 42 grams during biopsy. PSA back in 2011 was 2.15. Still trying to understand the facts and options. Urologist recommended surgery and said I might also consider the radioactive seeds, was going to see a local specialist.

I live in Boston area, made an appointment a Dana Farber to see the PC team which will be coming up. They want biopsy slides, CT image, etc. Seems more younger PC patients on this forum have gone with the surgery, I like the idea of worrying less about it coming back with the removal but ED and incontinence seems like a major risk. No issues getting up at night to go to bathroom now, until after diagnosis when I am up very late reading about PC!. ED has never been an issue, active, healthy sex life with wife of 20 years. Read scary posts on other sites about others with surgery wishing they did not do it or even get treated. I did have vasectomy at age 40, read about studies saying this could be tied to more aggressive cancers.

I have also read about Proton Radiation and it causing less damage to surrounding tissue, less side effects. Proton Radiation is available at Mass General in Boston. Trying to keep an open mind once I see the specialist at Dana Farber.

Good news is I live in a great place to deal with it and feel lucky to have caught it early. I am very healthy, 5'10" 165, in good shape, go to gym a few days a week. Not prepared for balance of life dealing with ED or controlling my bladder.

Wanted to see if any top surgeons recommended by the group in Boston at Dana Farber, Mass General, etc. Any other advice welcomed.
Posted 6/3/2015 12:39 PM (GMT 0)
Hi Wolfster.

I was diagnosed last September '14 with stats similar to yours. I was early convinced surgery was the right way to go for a younger, healthy patient. Now, having read more, I'd consider radiation (wait to hear from Tall Allen on this), though I think I'd still go with surgery. I met with leading robotic and open surgeons, chose open, am glad I did - that piece went very smoothly.

My surgeon is Francis McGovern at Mass General. I recommend him. He's done several thousand and is a dedicated learner, always improving.

There are others from our region here with positive experiences with other surgeons. There are some excellent robotic surgeons. You can watch one of them operate on YouTube.
Posted 6/4/2015 1:19 AM (GMT 0)
Thanks Wilderness. Did Mass General discuss the the Proton radiation? Do you mind if I ask your age?
Posted 6/4/2015 1:37 AM (GMT 0)
Dana-Farber will put you on the best path...The only thing for SURE about Proton is that it costs 2 or 3 times as much as Photon. The outcomes and side-effects are still being debated..

Much of the damage caused by radiation does not manifest itself until 5 or 10 years down the road...the younger you are, the more you need to consider this..On the positive side, today's LINACS are MUCH better at sparing healthy tissue then the machines used only a few years ago...So the surgery / radiation debate is in a state of flux at the moment...As far as ED goes, at the 3 year post treatment mark, the ED impact is about the same. 50% of the men who underwent either treatment report some degree of impotence..
Posted 6/4/2015 1:39 AM (GMT 0)
I'm 66, Wolfster.

Adam Kibel is the Brigham and Women's MD featured in a YouTube video on robotic prostatectomy here: https://www.youtube.com/watch?v=11w7mISlA9E

When I first met with Dr. McGovern he expected me to also meet with an RO and an MO before deciding on initial treatment & offered to arrange that. So he could be a good starting point for access to all MGH services.
Posted 6/4/2015 1:58 AM (GMT 0)
Wolfster, my stats are almost exactly like yours, except I'm 8 years older. I opted for robotic surgery in St. Louis, and 3 months post surgery I'm dealing with occasional drips and leaks...but I'm not needing pads. And I have no ED issues. No drugs required.

It's absolutely OK to ask your particular practitioner his personal stats as far as ED and continence issues for cases like yours. Mine told me that based on my biopsy, tumor location, general health, etc that I had a "90% chance of trifecta within a few months". That has proven to be true.
Posted 6/5/2015 11:33 PM (GMT 0)
Thanks Guys.

I understand the time bomb with radiation on ED and rectal issues. Let's assume I am lucky enough to avoid major ED or incontinence with the surgury. Are you out of the woods for future ED and incontinence as it relates to the surgury (understand the effects of aging on us all) or are there future risks as well?
Posted 6/19/2015 9:44 PM (GMT 0)
With surgery once you recover continence and from ED it is very unusual to relapse. Old age is another topic...

After "shopping" around So NH and the Boston area I selected Dr Peter Chang and Dr A Wagner for surgery and then Dr Bubley (MO) and Dr Aronowitz (RO) and Dr I Kaplan (RO).
They are all at Beth Israel Deaconess in Boston. I could fill pages with praise for Dr Chang and the team. BIDMC is a high volume PC center and is rated "Outcomes: significantly better than expected" by USnews survey.

My diligence paid off. Dr Chang was available in person, via cell phone and e-mail to answer all my questions. He is very frank when answering questions. I attribute part of this to his Harvard Prof role. My surgery was a good experience: The hospital has obvious measures to avoid cots, infections, and other issues. I was off Percocet and on an occasional Tylenol within 3 days. Day 8 I dropped by the office for a few hours and returned to a desk/lab job on day 12. By month 3 I was completely off pads. I'm a G4/5=9 with positive everything, and my first post-op PSA was <.01, that is the best part.

hms
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