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Posted 7/7/2010 2:17 PM (GMT 0)
Does anyone know how you can find an actual prostate cancer specialist? Although happy with the treatment of my urologist and radiation oncologist, they seem to be at the extent of being able to "do" anything. It just doesn't feel right to me that I should be sitting here doing nothing when the cancer is now in my bones (although not causing any pain whatsoever). I'm hoping a specialist will "do" something besides just saying "we just aren't sure what is the best way to treat your cancer."

Thanks,

Jim B
Posted 7/7/2010 2:33 PM (GMT 0)
Here's a starting point- a definition of what determines one:

prostatecancerinfolink.net/tips-tools/pick-prostate-cancer-specialist/

unsurprisingly, here's a good article from PCRI, with plenty of link to sources of experts:

www.prostate-cancer.org/pcricms/node/38

It's a start, anyway.
Posted 7/7/2010 2:37 PM (GMT 0)
I feel your pain and despair on this. You might have to travel, might as well do so. Look at and join group at www.hrpca.org (check links to join it)
Posted 7/7/2010 3:38 PM (GMT 0)
Where are you located, Jim?

Isn't there a major teaching hospital or a major cancer center nearby?

You are correct: you need a MEDICAL ONCOLOGIST WHO SPECIALIZES IN PC.

Mel

Posted 7/7/2010 3:55 PM (GMT 0)
Jim, I have the same question as you. I have been looking for a medical oncologist but no luck so far. They sort of leave the PCa to the urologists. Then, to complicate matters, I am looking at moving out of the area so not likely to be a long term thing for them.

Don
Posted 7/7/2010 4:05 PM (GMT 0)
Jim, it would indeed be worth your effort to travel to one of the "Centers Of Excellence" and get a state of the art diagnosis and treatment plan..With careful planning, the cost of this is manageable. Then you will know EXACTLY where you stand and much of the uncertainty about your future will be removed.

Johns-Hopkins
MD Anderson
Dana-Farber

There are 3 or four more...It all starts with a phone call...
Posted 7/7/2010 4:13 PM (GMT 0)

Jim:

Here is a post from earlier this year (or late last year) that I saved.  It was written by JohnT who had looked into this question in some detail.  Perhaps JT will drop in on this thread with some comments or additions.

It is extremely difficult to find a Prostate Oncologist. The PCRI website had a list and discontinued it because of of complaints from drs that were not on the list.
The only other list I found was on US TOO.
On The East Coast:
Charles Meyrs, Earlysvill Va 434 964 0212
Maria Mallarino, Sarosota Fla 941 3777 9993
Daniel Petrylak, New Yorl City. 212 305 1731
Dan Costin, white Plains NY 914 684 2779
Robert Dipaola, New Brunswick NJ 732 235 2465
William Berry, Raleigh NC. 919 781 7070.

The only Dr I have heard of that has an excellent reputation is Charles Meyrs; I don't know anything about the others.
We need a better way to find Prostate Oncologists

I guess it's just by word of mouth.
On the West Coast there is Stephen Strum in ORE, Mark Scholz, Richard Lam, and Bob Liebowitz in Los Angeles, all highly regarded.
JohnT

Regards,

Tudpock (Jim)

Posted 7/7/2010 4:54 PM (GMT 0)
www.is-canceralliance.com, This is an organization that connects patients to top oncologists around the world. You may want to check out thier website; they do complete evaluation and testing and connect you to a doctor that specializes in you condition. Dr Strum is associated with this organization.
Also on the westcoast> Mark Scholz 310 827 7707.
JT
Posted 7/7/2010 5:04 PM (GMT 0)
Although the article is pretty basic, still thought it had some good info and starters on the subject:

http://prostatecancerinfolink.net/tips-tools/finding-the-medical-oncologist-who-is-right-for-you-one-specialists-opinion/
Posted 7/7/2010 5:13 PM (GMT 0)
It is highly recommended that if a patient fails primary treatment (surgery, cryo, etc.) even before jumping into salvage therapie(s), you should consult a prostate oncologist, many people don't and some because they didn't think it was necessary and gee there doc never mentioned it. A second opinion on any major treatment is always wise, also good to assess from someone else, the causes for the primary gig that failed anyway.

Good weblink John.
Posted 7/8/2010 6:16 PM (GMT 0)
Jim, I agree with Zufus. After my surgery failed by Uro referred me to a radiation oncologist without even mentioning seeing a medical oncologist. I had to seek out two of my own. Called Dana Farber to schedule an appointment and made an appointment with Dr Myer based upon the recommedation that I saw here and on other sights. Calling a Center of Excellance makes a lot of sense.
Posted 7/8/2010 9:34 PM (GMT 0)

Hi Jim B -  My husband was also diagnosed at age 48 and post-surgical pathology was Gleason 9.  You've received great advice so far, of course.  I just want to reiterate that you should do your research and find a Prostate Cancer Oncologist.  It took us a while to get our surgeon, (who performed the Robotic Prostatectomy), to refer us to an Oncologist when my husband's PSA began to rise at a fairly alarming rate post-surgery.  We live in Atlanta and were referred to an Oncologist here who "specializes in PC", which ended up being, um, less than optimal.  Although this Dr. apparently had numerous PC patients, and probably is one of best oncologists to deal with PC in our area, we found his approach to my husband's situation to be very cookie-cutter.  We did our research and my husband is currently being treated by one of the top PC oncologists in the country.   And he/we travel from Atlanta to Los Angeles to do so... it's worth it.

You will continue to get great information and support on this forum.  Don't hesitate to reach out.

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