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The short list.....

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Posted 6/9/2014 12:06 PM (GMT 0)
Starting to prepare the short list of specialists in the USA... Preparing just in case its small cell or other and definitely will be contacting regardless considering all the mets Paul has... But who and where are your shortlisted docs? Any help would be appreciated....
Posted 6/9/2014 12:43 PM (GMT 0)
I went to the USA news and world report list of best hospitals, best Urology hospitals and best cancer hospitals to get my list. I chose Johns Hopkins and let them choose a surgeon and rad oncologist for me to interview. I figured that the best urology and overall hospital would not have any docs who weren't excellent.
My RP surgeon was Dr. Edward Schaeffer MD PhD.
Bob
Posted 6/9/2014 1:08 PM (GMT 0)
I went at it the same way Bob did and picked Dana Farber for further treatment. Considered MSK, but Dana Farber was closer to me. Also wanted a consult with an expert in private practice and saw Dr Myers. This however was an after thought after I read his book around the same time.
Posted 6/9/2014 2:10 PM (GMT 0)
Dr. Oliver Sartor at Tulane and Dr. Snuffy Myers in Virginia.
Posted 6/9/2014 3:50 PM (GMT 0)
Myers, as mentioned.

Hussain at Umich in Ann Arbor, Mi.

I chose Lam in Marina del Rey, Ca.

Mel

Posted 6/9/2014 3:51 PM (GMT 0)
I have Dr. Frederick Ahmann as my backup plan if my PSA rises. Medical oncologist at Arizona Cancer Center (an NCI-designated cancer center). He specializes in prostate cancer and has been recognized in US News "Best Doctors in America" for that.
But part of the reason is that he's close--in fact, he's the only medical oncologist who specializes in prostate cancer within 500 miles of me.
If he wasn't there I'd probably consider one of the other names people are suggesting here.
Posted 6/9/2014 4:15 PM (GMT 0)
KuKu, there is a list of prostate oncologists on pp. 267-270 at the back of Dr. Scholz' book, "Invasion of the Prostate Snatchers". You guys needs a real specialist as several of us have previously noted. Myers, Lam, Hussain and Sartor as listed on this thread are on this list.

Also, may I suggest that you add a signature to your posts? For many of us older folks it's a little hard to recall the exact specs/situation of every poster so having the signature makes it easier for everyone and also is likely to get you better responses to your questions with the background clearly displayed.

Jim
Posted 6/9/2014 4:33 PM (GMT 0)
There are many excellent options. Where are you located Kuku?
Posted 6/9/2014 5:06 PM (GMT 0)
Jim:

Regarding profiles: one of my frustrations was the character limitation. Have they relaxed that? I just went to my profile and found I could add stuff.

Mel

Posted 6/9/2014 5:09 PM (GMT 0)
Scholtz and Lam in Marina Del Rey 

Posted 6/9/2014 5:18 PM (GMT 0)
Wow- I had a signature with all the stats. Not sure where it went... strange
Posted 6/9/2014 5:25 PM (GMT 0)
PS I just checked and they are still there (stats) and they showed up last post. A glitch in the matrix this morning?

Thank you for the ideas.

Tony- we are in Atlanta but will travel anywhere necessary. Prob looking into trials soon.

Tudpock- I can't find that book on Amazon for some reason doing a search...

Oh, and if any in Davis/Sacramento/ Frisco/ Walnut Creek areas that may be good as we have friends out there but I don't think UC Davis does any of that. Need to contact a friend who is a researcher there in another dept and ask.
Posted 6/9/2014 5:45 PM (GMT 0)
400 characters is the limit for a signature.

If you update one, it takes a while for it to start showing up. I suggest that you log out after saving the change, then log back in. That seems to help in some cases.
Posted 6/9/2014 6:05 PM (GMT 0)
kukukajoo:  "Tudpock- I can't find that book on Amazon for some reason doing a search... "

try this link:  http://www.amazon.com/Invasion-Prostate-Snatchers-Essential-Managing/dp/1590515153

Posted 6/9/2014 6:07 PM (GMT 0)
KuKu, your signature is showing up just fine now...thanks.

Re the book, I just searched on Amazon under books. I put in Invasion of the Prostate Snatchers and it is there. $8.99 for the Kindle edition, $13 bucks for paperback or $2 used. I'm guessing it is at your local library as well. I tried to scan in the three pages and email the list to you but my scanner is on the fritz.

There are two prostate oncologists on the list from UCSF: Dr. Eric Small and Dr. Charles Ryan

Jim
Posted 6/9/2014 11:41 PM (GMT 0)
Tudpock, I didn't anything to make it show up.... I have no idea what happened when I first posted this morning... Maybe it hadn't had its coffee yet? :) BUT when I went to check it was still there (before I realized I had just made a post with it showing up) I did add "fiancé's stats" to it so nobody would be misled by that. Looks like that isn't showing yet.

Thanks for the link to the book. I am ordering now.
Posted 6/10/2014 9:32 AM (GMT 0)
Hi Kuku,

Dr. Scott Miller is there in Atlanta and a friend highly recommended him to me as an experienced robotic surgeon. If a RALP is in Paul's future you may want to consider him, he has done over 1,500 I was told.
Posted 6/10/2014 11:40 AM (GMT 0)
Hi Turp,

Its way too late for any surgery for Paul at this point but Dr Miller would have been perfect.

Friday is the big meeting with urology and next week we meet with oncology. We are trying to add a radiation oncologist to the mix as well for future reference and utilization.
Posted 6/10/2014 1:53 PM (GMT 0)
In Atlanta also look at Thomas Seay, he is my wife's med onc and he does a lot of prostate cancer work and thinks outside the box. He is at Atlanta Cancer Care, affiliated with the Northside Hospital Cancer Center. Also, Vahan Kassabian at Georgia Urology. He is an urologic oncologist and practices with my urologist, Lewis Kriteman. Both of these oncologists do a lot of advanced and high risk work using chemo, Provenge, second line HT, etc.
Posted 6/10/2014 3:46 PM (GMT 0)
KU:

Did you indicate your geographic area?

Mel

Posted 6/11/2014 4:08 PM (GMT 0)

kukukajoo said...
Its way too late for any surgery for Paul

I hope you will keep an open mind about this. There is some recent evidence that "de-bulking" the primary source of the tumor with RP (or possibly RT) may slow the spread and extend survival. The primary tumor in the prostate seems to be the one responsible for most, but not all, of the metastatic spread. This has yet to be tested in an RCT, but is what seems to be happening in the cases in the Medicare/Medicaid (SEER) database.

Might Men Diagnosed with Metastatic Prostate Cancer Benefit from Definitive Treatment of the Primary Tumor? A SEER-Based Study

Prognostic impact of definitive local therapy of the primary tumor in men with metastatic prostate cancer at diagnosis: A population-based, propensity score analysis

In fact, with men diagnosed with small cell prostate cancer, surgical removal of the prostate was associated with prolonged survival:

Genitourinary small cell carcinoma: determination of clinical and therapeutic factors associated with survival.

RT may or may not accomplish the same thing. A lot depends on the histological analysis. Some of these cancers are very stem-cell like and are relatively impervious to radiation. However, most often they are of mixed type that respond to both hormone therapy and radiation. The other consideration is whether radiation might cause urinary retention.

This is a very hard bargain, as Paul would be facing the side effects of RP with benefits far from assured. All of this has to be very carefully considered with the help of an oncologist experienced in this.

- Allen
Posted 6/12/2014 3:49 AM (GMT 0)

kukukajoo said...
Tudpock, I didn't anything to make it show up.... I have no idea what happened when I first posted this morning... Maybe it hadn't had its coffee yet? :) BUT when I went to check it was still there (before I realized I had just made a post with it showing up) I did add "fiancé's stats" to it so nobody would be misled by that. Looks like that isn't showing yet.

Thanks for the link to the book. I am ordering now.

Seems to me you are supposed to select/check "include signature" for every post, although I think I have had the signature show up sometimes even when I didn't select that. In fact, let's see what happens this time when I do not select "include signature".

Bill
Posted 6/12/2014 3:50 AM (GMT 0)
Yep, no signature if not selected.
Posted 6/12/2014 6:02 AM (GMT 0)

kukukajoo said...
Starting to prepare the short list of specialists in the USA... Preparing just in case its small cell or other and definitely will be contacting regardless considering all the mets Paul has... But who and where are your shortlisted docs? Any help would be appreciated....

Check out the US Too Insdpire.com site where a poster Dave205 already has posted zillions of these type of lists.

LupronJim
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