As I finish the outpatient phase of my stem cell transplant, I have been receiving a bunch of emails asking for advice about when and how to go about getting a second opinion about one’s myeloma treatment.

I believe that a newly diagnosed multiple myeloma patient should always try to get a second opinion.  But I also believe a myeloma patient should consider seeking a second opinion anytime their oncologist/hematologist suggests a major treatment shift.

For example, maybe you are on a certain treatment regimen.  But your monoclonal protein numbers have been inching up, so your medical oncologist suggests you add another drug to the mix.  Or perhaps your oncologist recommends a stem cell transplant.

What now?

First, I would suggest asking your current medical oncologist whom they might suggest seeing for a second opinion.

Then I would recommend spending some time investigating cancer centers that specialize in myeloma in your area.  Or ask other patients for recommendations.

Next, check with your insurance company.  How far will your policy allow you to go?  Can you cross state lines? How much of the process will your insurance cover?  For instance, most myeloma specialists want to run their own tests.  Will your insurance pay for a full range of diagnostics, even if many of them have been run by your original doctors?  And don’t take your policy’s word for it.  Speak with a supervisor at your insurance company, and make sure you get something in writing.

Particularly if you’re not limited to a small number of doctors or treatment centers, I highly recommend you seek a second opinion from a top expert in the field.  There are a quite a few top myeloma specialists, so selecting one or two can seem like a daunting task, but if I can do it, you can do it too.

Find out a bit about their center and their philosophy regarding treating myeloma.  Does the center have more than one well-respected myeloma specialist?  Do those you are considering use an aggressive treatment approach, or do they try to manage the myeloma with a less aggressive regimen that is more convenient and tolerable for the patient?  Do they tend to recommend zero, one, or two stem cell transplants?

If you want an opinion from a myeloma expert, but travel is difficult or expensive for you, another option is to sign up for a telephone consult through the International Myeloma Foundation.  You can learn a lot by speaking with the well-respected myeloma experts who volunteer some of their time to this valuable program.

Here's an interesting dilemma:  What if your second opinion is extremely different than your first?  Try a third!  Or start researching and learning more about what each doctor suggested.  Don’t forget that your opinion is important, too.

This can all be a lot of work, but imagine how much you will learn about your treatment options.

I did a lot of homework before deciding when and where to undergo my stem cell transplant.  Based on how well I seem to be doing so far, I believe it was time well spent.

Good luck with your homework.  I hope you find the answers you are looking for.  Feel good and keep smiling!  Pat