[Karen]

How and where to get a myeloma second opinion?

by Karen on Tue Mar 18, 2014 11:34 am

Hi everyone,

As I mentioned in another post, I am gradually moving towards an autologous stem cell transplant (auto SCT) in late June/July. However, I have not yet gone the route of getting a second opinion regarding this decision. I'm trying to decide if this is a worthwhile effort. Part of me thinks it is, and part feels that there is so much difference of opinion about SCT vs no SCT (just continuing drug therapy) that I could talk to five different doctors and get five different opinions, none of which would help with my decision.

(Quick background: I was diagnosed in 12/10; was in clinical trial with Rev/Dex/Velcade; got into VGPR until around the end of the summer of 2013, when my Kappa Light Chain numbers started going up - at that point I was down to 15 mg of Rev and no other drugs. Started a Velcade/Dex/Cytoxan regimen in December and the numbers are all back in the normal range now. Also restarted Zometa after a short break. No ongoing issues with pain, etc., latest bone scans and PET scans all good.)

If you did get a 2nd opinion, how did you find the doctor(s)?

Right now I have a hematology oncologist whom I like very much. I have also seen the transplant oncologist a couple of times (both located at my hospital, the Wilmot Cancer Center at URMC/Strong in Rochester.)

I can get down to NYC fairly easily, or could go to Boston. Could probably also find doctors at another Rochester hospital, but would rather talk to a myeloma specialist at a major cancer center.

Should I ask my doctor for a referral? Or is there some place else to look for ideas?

Thanks!

[Wayne K]

Re: How and where to get a myeloma second opinion?

by Wayne K on Tue Mar 18, 2014 11:44 am

I don't know how all SCT centers work, but the one my doctor referred me to (and where I had mine done) did a very complete examination of their own. Basically a second opinion.

I'm assuming before they do one a different doctor will look at your situation. Even being in the same organization shouldn't change his opinion I would think.

[Beacon Staff]

Re: How and where to get a myeloma second opinion?

by Beacon Staff on Tue Mar 18, 2014 11:50 am

Karen,

Asking for suggestions here is a good idea, as there are plenty of people here who are knowledgeable about what myeloma treatment centers (and specialists) there are in your general vicinity.

That said, in case you haven't seen it already, The Beacon does have a list of treatment centers you may want to consult:

https://myelomabeacon.org/resources/treatment-centers/

Also, see this page at The Beacon:

Listing of myeloma specialists in Massachusetts

Best of luck.

[goldmine848]

Re: How and where to get a myeloma second opinion?

by goldmine848 on Tue Mar 18, 2014 2:36 pm

My primary treatment has been at a cancer center in Pennsylvania. When i was considering a transplant, I decided to go to Hopkins in Baltimore because they have myeloma specialists and because, in contrast to my primary doctor who strongly favors transplant, Hopkins is at the other end of the spectrum. I thought it prudent to get both sides.

I first checked with my insurance company to be sure that a second opinion and related tests at Hopkins would be covered. They were. Then I simply called to make an appointment. They told me what medical records they would need and I had them sent in advance of my appointment. It took some time, but it was not complicated.

[gardengirl]

Re: How and where to get a myeloma second opinion?

by gardengirl on Tue Mar 18, 2014 3:21 pm

Hi Karen! You may have read my post where I have just recently obtained two other opinions and they were both very different (one aggressive, one conservative)! My hematologist / oncologist is the one who wanted me to get two more opinions and he gave me the names. I'm sure your doctor would respect your desire to obtain more opinions and provide you with some recom­menda­tions.

[TerryH]

Re: How and where to get a myeloma second opinion?

by TerryH on Wed Mar 19, 2014 9:28 am

I've listed below centers (and associated myeloma specialists) that come to my mind that you might want to consider for a second opinion that are within your broad geographic area:

Roswell Park - Buffalo (McCarthy)
Dana-Farber - Boston (Anderson, Richardson, Munshi)
Massachusetts General - Boston (Raje)
Yale - New Haven (Dhodapkar)
Mt. Sinai - New York City (Jagannath)
Memorial Sloan-Kettering - New York City (Giralt; soon also Landgren, formerly at the NIH)
Columbia / NY Presbyterian - New York City (Lentzsch)
John Theurer Center - Hackensack (Siegel, Vesole)

I doubt this list is complete, both in terms of the centers I've listed and in terms of the specialists I've included. It's just what comes to my mind.

A little further away would be the University of Pennsylvania and Johns Hopkins to the south, and the Cleveland Clinic and Ohio State to the west.