I find myself frequently advising multiple myeloma patients to “get a second opinion from a myeloma specialist before making a major therapy decision.”

You might ask, “Why should I bother to get a second opinion?”

My response is: why not get a second opinion from a myeloma specialist?

But I hear plenty of reasons and excuses.

“There isn't a major cancer center near me.”

“I like and trust my doctor, so why not just do what he or she says?”

“My insurance won't pay for a second opinion out of my area.” I hear that one a lot.

I realize not everyone can afford or is physically able to travel to a major cancer center if there isn’t one nearby. I'm not trying to force anything on anyone. But there are lots of options for getting a second opinion, some of which don’t have to cost anything at all.

So I thought it might be helpful to further explain in this column why I think it’s so important to get a second opinion from a myeloma specialist.

First, let me define “myeloma specialist.” In a perfect world, this doctor only sees myeloma patients, period.

And yes, specialists like this do exist. The Mayo Clinic in Rochester, Minnesota, currently has over 20 hematologists who do nothing but treat myeloma and amyloidosis, a related condition. Physicians at the myeloma institute of the University of Arkansas for Medical Sciences do the same. And there are other departments scattered around the country with myeloma specialists.

These docs not only stay on top of the very latest ways of treating myeloma, they are the ones conducting the research.  They not only attend the most important myeloma-related conferences, the American Society of Hematology and American Society for Clinical Oncology meetings, every year, but they are the ones regularly giving talks and poster presentations at these meetings.

A fellow myeloma patient recently said in response to that, “What if my doctor doesn't have time to travel to conventions or to do research? That doesn't make him a bad specialist!”

Maybe not, but he’s not going to be up on the latest ways of treating myeloma if he’s not attending these conferences where the latest approaches are being presented.

In an ideal case, every myeloma patient would get a second opinion from one of these very top experts, but if your hematologist or medical oncologist sees anywhere between 15 and 20 myeloma patients at a time, I would say they qualify as a specialist – if and only if they can show you research examples and share personal case studies to back up their recommendations.

If your local doctor isn't willing to work with one or more specialists – or answer your specific questions about how, when, and why to proceed with a given therapy – it is time to find another doctor!

The idea is to gain insight from a true specialist. Seeing only a local oncologist is fine as long as you have a textbook case of myeloma and nothing goes wrong, but myeloma is rarely that simple.

I know of dozens of examples where things are so complicated that even myeloma specialists cannot agree about what to treat with and when.

One obvious situation deals with when smoldering (asymptomatic) myeloma patients should start treat­ment.  Common practice is not to treat until the person develops symptoms and progresses to myeloma.  But ongoing research ^[1] suggests that certain patients who are at particularly high risk of progressing might benefit from early treatment.

I am currently preparing to live another common example myself. What type of maintenance medication(s) should I use once my Revlimid ^[2] (lenalidomide)-Velcade ^[3] (bortezomib)-dexamethasone ^[4] (Decadron) treatment is successfully completed in a month or two?

My medical oncologist doesn't agree with my myeloma specialist. So I need more information.

I have also heard of plenty of patients whose local oncologists clearly don’t know how to treat myeloma.

One patient I know said their local oncologist never suggested any options.  Instead, he insisted that a newly diagnosed myeloma patient should get an allogeneic (donor) stem cell transplant.  Really?  Donor trans­plants are almost never given to newly diagnosed patients.  They are typically saved as a last resort or for patients with unusual circumstances.  Shocking!

This is an extreme example.  But I have heard a number of similar stories where obvious options were never discussed.

For instance, no mention of Revlimid, Velcade, or both.  Or insisting patients get unsedated bone marrow biopsies instead of sedated ones – then shaming them into the procedure because that clinic isn't set up to do sedated biopsies.  (I hear that one a lot!)

But more often, the examples are more subtle.  No mention of the latest combination therapies.  Prescribing the older thalidomide ^[5] (Thalomid) instead of Revlimid with no explanation. Never a hint that there might be a clinical trial available that fits a patient's needs.  (I hear this one the most often.)

Really?  Can’t you see why a patient needs to be informed and to seek an opinion from one of the top experts in the field?

Maybe this is a topic for a whole other column, but I firmly believe that you shouldn’t put your life completely in the hands of your doctors.  I believe in educating yourself so that you can voice your opinion too about what treatment regimen may be best for you.

I realize that this requires a lot of work and a commitment to keep up with therapy options.

But it is so much easier than it used to be! Tune in to The Myeloma Beacon on a regular basis. Read patient blogs once in a while. It can be as easy as setting up a news alert for articles that mention multiple myeloma – and then reviewing the material from time to time.

Yes, this can require that you spend an hour or so each week to keep up with the latest news and research and to take some time out of your schedule to seek a second opinion at a few key junctures in the course of your disease. But isn't that a small price to pay for something that could add months or years to your or your loved one’s life?

I guess saying I feel strongly about this is an understatement! But I care about my myeloma friends. I only want the best for us. After all, it won't be long until there will be even more treatment options. And an oncolo­gist who doesn't see enough myeloma patients could easily become bogged down and recommend an outdated therapy.

Now you know why it’s so important to get a second opinion from a myeloma specialist.  For tips on how to get a second opinion, see one of my Beacon ^[6] columns that I wrote this summer.

Best of luck to all of us! Until next month, feel good and keep smiling!