Mayo or Myers?

So the recap for people who haven't already slogged through my previous posts:

Husband is 58, diagnosed on May 17th with aggressive PC, took that up a notch to metastatic last night, based on bone scans showing lesions on arms, legs, spine, ribs, pelvis, and enlarged lymph nodes.  Most recent PSA was 62.  Biopsy -- 12 or 12 samples were positive, with 100% cancerous in all but one region, where it was merely 95% cancerous. 

Based on recos on this board, I've spoken with Dr. Myers' office in VA, who says they can see us some time in June (the person with scheduling authority is out this week). 

I also talked to Mayo, who can get us in with a Dr. Kwan next Tuesday.

Which would you pursue, or given how high stakes this is, would you want the advice of both parties?  Or is one or both not even the reco -- if you think I should have been talking to sloan kettering or some other place instead, let me know. 

thanks

Katie

I vote Myers, but I'm biased...I am one of his patients.

I've also found it helpful to have a medical oncologist that is local to you that is pro-Myers and can work with you and Myers. Just a thought.

Sloan is great as well. Where do you live?

Agree with Casey. If he is taking Casodex then the couple of weeks wait should not be a problem. It has been the experience of many of the older advanced patients that private doctors like Myers are much more up to date on the new protocols and drugs and are more willing to try them than the better known major cancer institutions.

Jerry,

Thank you for the link to Dr. Kwans presentation - this is fascinating stuff.

Personally I would see both if I could. Mayo is big believer in the evidence of large numbers. They have well developed protocols and won't mislead you with false hope or false pessimism. OTOH, there may well be patterns of disease and potential treatment that are subtle, newly emerging, and not sufficiently researched to be widely accepted, but which Dr. Myers understands and trusts. So Dr. Myers may have additional options in mind that Mayo may not be ready to introduce in their general practice. So you will get good advice from both but each of them is coming from a different starting point and brings different presuppositions to their practice.

It could well be that they would both tell you to do the same thing at the outset, but that if the first line of treatment doesn't work or it fails to work, they might have different ideas of what to do next.

I would be encouraged by the fact that Kwan is researching advanced and difficult cases and involved with trials of cutting edge stuff. It would reasonable to ask him what potential trials might be excluded based on what steps you take now. He should be able to answer that question. However his publications list mayoresearch.mayo.edu/mayo/research/staff/publications-listed.cfm?personid=14085411 also indicates that he researches in a wide variety of different urological cancers and so he is not as focused on prostate cancer as some other specialists.

If it were me I'd see Mayo and keep the apt with Myers. I'd be honest with the Mayo doc about intending to see Myers and ask about the risks associated with holding off on beginning mayo's treatment recommendation for a couple of weeks in order to see myers. No doc who is any good should be offended by your saying that you intended to seek another opinion in a case such as this. They should be willing to cooperate in your exploring all the options and making the best possible decision.

Post Edited (proscapt) : 5/22/2012 6:50:59 PM (GMT-6)

I would do both. Getting the perspective from Mayo can not hurt and will provide additional educational benefit and I assume will be covered by insurance. You'll have to come out of pocket for Myers anyway but I would definitely take the follow up appt with him. We are currently seeing 2 of the top Oncologists in the country, Dr. Myers in VA and Dr. Leibowitz in CA. We've been to Mayo in Rochester for the C-11 Choline scan and down to Sand Lake in Orlando for the Feraheme scans. We live in Atlanta. As you already know, you're playing a bit of a different game with G9 and mets, but with top doctors and cutting edge treatments I believe it's a game you can win, or at least be successful at for a long time.

Amy

I would see both, if you have the ability to do so. I think proscapt has it exactly right. Best wishes, Medved

Hi Everyone -- thanks so much for your advice. I decided to do both, as many have recommended. I just couldn't pass up that appointment next week at Mayo, but will also get on Dr. Myers' schedule as soon as I can.

Ted took his first dose of casodex tonight (the therapy recommended by the local urologist), so between that and having Mayo on Tuesday, we at least feel good that we've started to take action.

Zimac -- that's where I netted out -- expensive but worth it. I don't want to spend recklessly now because it surely sounds like this is not a cheap journey we're starting out on, but I felt like it had to be a good investment to get Dr. Myers' point of view.

It seems like his strengths are only more apparent on the especially hard cases. I hope he's able to give you and your husband some new and effective options.

How much is an initial consult with dr myers?

I don't have an exact cost yet, but they said it would be between $1,600 and $2,000 (the variation depends on the number/type of reports that need to be reviewed).

The person I spoke to previously said they had late June openings, but that the nurse does triage and then schedules. That nurse practitioner called today, asked several questions about our "stats" -- number of bone lesion locations, Gleason, and his other health issues, etc., and then said it could take 3 months to get in. That made me nervous (like we might be beyond help, so no need to rush, save nearer-term appointments for people they could save). But I know, I have enough actual facts to worry about, no need to read into things. Still a three month wait would make me sad.

On second thought, a one hour appointment was $700. So my first consult must have been $1400, and with travel $2000.

Additionally, I would suggest that you consider Dr. Oliver Sartor at Tulane in New Orleans.   He is in the same league as Myers, Scholtz, Lam, Liebowitz, etc., and has a lot of experience with advanced cases.   If you are closer to New Orleans or don't want to wait on Myers, you should consider trying to consult with him.