HealingWell
Search Close Search
☰

coordination of care with out of area specialists

Support Forums
>
Prostate Cancer
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 8/31/2011 6:08 AM (GMT 0)
I've decided to head out of town for a consult with Scholz or Myers, just to make sure there isn't more I should be doing at this point. I live in San Francisco, so both are a plane ride away.

For those of you who have gotten guidance from specialists who are out of your area, how do you handle the coordination with a local doctor, for further tests and ongoing treatment that need to be done locally? Do you have a local oncologist in addition to the expert you are consulting with? Does the out of area expert become your primary physician? In particular, how do you handle things with Snuffy Myers who, I understand, does not do phone consults? Does that mean that every time you need to talk to him you have to jump on a plane?

I have an MD friend here who strongly advised me to find the best prostate oncologist in San Francisco rather than start consulting with people a plane ride away. In some respects this makes sense, since San Francisco does have a highly regarded cancer center right here, and it would be nice to have someone I could see easily for advice and hand holding. I'm sure the best SF prostate oncologist is quite good -- if I could figure out who the best one is. But at the same time, I'm inclined to go see one of the top people who many on this board have recommended.

Any suggestions?
Posted 8/31/2011 11:45 AM (GMT 0)
Hi Proscapt,

Many see Myers, Scholz, etc., because they offer treatments that regular NCCN-following doctors won't, particularly triple hormone blockade and adjuvant chemo. These folks are on the leading edge, guided by evidence from studies, but also from their clinical experience and their extrapolations from the studies.

I consult Scholz, and do so by phone, because I simply can't afford to shell out for air fare. I call when I need further guidance. He is considerably cheaper than Myers, for what it's worth. Having never gone to Myers, I don't know who is better.

The problem, in my area at least, is that all the urologists and oncologists slavishly adhere to NCCN and "evidence-based medicine" (conveniently forgetting that both allow physicians to go beyond the guidelines based on their own clinical experience), so they wouldn't consider working with Scholz, etc. Because of that, I am engaging in guerrilla tactics, with a friendly GP who orders all the tests asked for by Scholz, and having Scholz call in my prescriptions. I am on ADT3, but my local medical and radiation oncologists, who are both in the same practice, don't know it. I'm looking for a more open minded medical oncologist for once radiation is done.

I should also point out that my medical oncologist, who supposedly "specializes" in prostate cancer, failed to inform me of Lupron's side effects and failed to order standard tests such as testosterone. He essentially said "come see me in three months for my next wallet infusion (I mean Lupron shot)." I consider him a dope. I only stay with him (for my Lupron shots) because I do respect the radiation oncologist who has excellent credentials.

I suspect things would be better in the SF area. Scholz is well known in CA, and I suspect doctors there are used to working with him. Myers could probably work as well. Even if you don't stay with them, they can provide a valuable second opinion from their experience with thousands of cases of prostate cancer.

Hope that helps.

Nellie
Posted 8/31/2011 12:33 PM (GMT 0)
Proscapt, I see Dr Myer. He does do phone consults and will respond to e-mails in between regular appointments. I do believe that he requires an in-person initial consult and periodic in-person appointments that are normally 12 months apart. He does charge a little more than my Dana Farber medical oncologist, but not much more. In my view he is worth the extra money. I agree with Riviere in that the level of expertise and care is greater. Dr Myer had me get a bone density test, put me on estrogen patches for bone density and hot flashes and had me get regular tests of T and DHST. He talked to me about the need to change my diet and exersize to maintain muscle mass while on HT. He also had me take Vit D and a few other suppliments. The Dana Farber medical oncologist only wanted me to come back every 3 months for hormone shots and gave me a prescription for casodex. He did also have a PSA test done at my 3 month appts. I got one test for T level just after SRT started.

The Dana Farber Dr didn't have any problem with ADT3 and the additional test Dr Myer prescribed. He actually was curious about how Dr Myer conducted his practice.

I am now thinking about making Dr Myer my primary medical oncologist and dropping the Dana Farber Dr.
Posted 8/31/2011 1:25 PM (GMT 0)
Pro:
In your (our) case it is the responsibility of the patient to assemble the treatment team necessary. It requires a change of attitude from being a patient to becoming a team member. Passive to active.
In the three and a half years I have consulted with Myers it has been my very good fortune to have first a uro and now an oncologist who know of him and say they have had patients work with Myers in the past. Both these doctors are long time, prominent members of their specialty in town. In my case my GP is out of the picture as I have no other medical issues that need to be addressed or that could cause complications. The uro, and now the onco is happy to have the business I bring and knows that I will be coming regularly for Zoladex and perhaps other issues, and it costs him nothing plus his responsibility is reduced. What a perfect combination!
I did check out the consultation/ managing oncologist issues with each doctor before proceeding. I am fortunate to live in an area where there are many good medical options and, in addition, competing hospitals with fleets of affiliated doctors and practices eager to work with patients so as to maintain revenue. No small thing. When I left the uro to go to the onco it was a cross-hospital change and the uro called me at home to ask me to consider one of his business colleagues as an onco referral. He was quite nice about it but the business intrudes.
I still need a local GP for the quotidian issues. I need a local onco for the current treatment and the potential future treatment that Myers may request/require.
I have no urological issues so the uro is unnecessary. If I needed urologic treatment I would be happy to return to the one I had for PCa treatment and he would welcome me back. I burn no bridges.
The posters above reflect my experience with the out-of-town managing oncologist experience.
Posted 8/31/2011 10:17 PM (GMT 0)
I have consulted with Scholz. He does do phone consultations and I find his office staff to be very helpful, friendly, and efficient.

My local urologist is very willing to work with Scholkz or Dr. Hussain (at Umich; I also consulted with her).

Mel

Posted 8/31/2011 11:26 PM (GMT 0)
Thanks, guys. I really appreciate the suggestions and perspective. Best wishes to all.
Posted 9/1/2011 10:35 PM (GMT 0)
I consulted with Scholz for my initial DX for a 2nd opinion; best move I ever made. I now do a phone consult with him once per year for $75 and use my GP and local radiologist for all my other needs. My radiologist has no issues in following Scholz's recommendations and often asks "What did Dr Scholz say about that".
JT
✚ New Topic ✚ Reply