Over the years, I have heard a large number of patients—and especially caregivers—aggressively defend their anti-myeloma therapy and treatment center choices.

At first I was confused by this. I didn't understand why others could become so upset and defensive over different therapy choices.

But the truth is: nearly every multiple myeloma patient and caregiver today has been placed in a horribly unfair and difficult position.

I'm not talking about our cancer—of course that isn’t fair! But I'm talking about the divergent therapy choices we are all expected to make.

Do I treat my multiple myeloma “aggressively” by using several novel therapy agents together? Or do I “watch and wait” to see what happens next? Do I get a stem cell transplant if and when initial induction therapy helps knock the myeloma back? Or do I stick with the therapy I'm using until it stops working and worry about getting a transplant later?

My first Mayo Clinic oncologist, Dr. Steven Zeldenrust, framed the question this way: Should I “pull the band aid off slowly” by using novel therapy agents and delaying undergoing a stem cell transplant, or should I “rip the band aid off” and go to transplant right away?

Talk about difficult decisions! But wait, there's more!

Where do I go for treatment? A local cancer center? Or a larger, nationally recognized cancer center? If so, which one do I chose? The Mayo Clinic, Mt. Sinai, Dana Farber, and Moffitt all treat multiple myeloma in a moderate fashion, while the nation's largest multiple myeloma treatment center in Arkansas (UAMS) often recommends a much more aggressive approach.

WHEW! No wonder multiple myeloma patients and caregivers can become emotional and defensive about their therapy choices. Even though we’re unprepared to make these medical decisions, our lives depend on the decisions we make. In order to feel comfortable with our decisions, many patients convince themselves the therapy direction they chose is the best treatment for them—and they don’t want to second guess their decision.

When I was diagnosed, I didn't realize there were so many different choices. I knew Dr. Zeldenrust and other Mayo Clinic myeloma specialists weren't big fans of tandem transplants. But I hadn't yet heard of UAMS' aggressive Total Therapy approach—and Total Therapy was never presented as an option for me.

Now I read about how UAMS claims to be able to cure multiple myeloma in younger, low-risk patients.

WHAT? A cure? No one ever told me about that! But at what cost? Undergoing a pair of stem cell transplants six months apart, sandwiched between taking multiple novel therapy agents for years. Total Therapy had better work!

As it turns out, I would have been a prime candidate for Total Therapy. Who knew? It isn’t likely I would have chosen the Total Therapy approach. But if I had chosen to undergo this very aggressive treatment regimen—I think I might get a bit defensive if anyone challenged my choice—or the effectiveness of the program.

Geography can also play a major role here. So does one's insurance coverage. For me, UAMS was three states away, while Mayo Clinic was a short two hour drive. My insurance considered Mayo Clinic an approved provider. UAMS would have been out of network. This has nothing to do with effectiveness of treatment at the respective institutions. It has everything to do with access, convenience, insurance, and money—but these are all important considerations too.

We are not helping others by touting our own choices or disparaging the therapy choices of others. I think we all need to remember that our therapy choices are uniquely personal.

Multiple myeloma is a complex cancer. What works for one of us may not work for another—either by choice or necessity. We need to be respectful of our fellow patients' choices. After all, we are all in this together!

Feel good and keep smiling! Pat