May is National Cancer Research Month, and we have something to celebrate:  The deal struck by Congress to fund the government through September maintains spending both for the National Institutes of Health (NIH) and the National Science Foundation (NSF).  For patients, this means that scientists will continue uninterrupted their research into diseases—causes, treatments and yes, perhaps cures. 

So where are the loopholes?   

First, the deal lasts only through September 30th, the end of this fiscal year.  It’s anyone’s guess what the NIH and NSF research budgets will look like next year under the full decision weight of the new Administration.

Second, while patients increasingly are demanding that research and treatments revolve around them—not the other way around—where are physicians in this mix? 

This patient doesn’t know nearly as much as many patients with whom I’ve conversed one-on-one, through Patient Power programs like Patient Café, or whose thoughtful and well-researched comments I read on CLL sites like ACOR.org (Association of Cancer Online Resources). However, I don’t have to know everything. The lesson I learned more than 35 years ago after attending a workshop on DIY plumbing is that when the toilet leaks, call the plumber.

Interestingly most of us are comfortable and don’t think twice about calling an expert when we need help—to fix the pipes, install appliances or repair our cars.

However, that’s not the case with our health. When we need a doctor, many of us stick with the first physician we see, no matter how complex and/or serious the issue.  I did that 10-1/2 years ago. I already had been diagnosed with CLL stage IV and decided that I didn’t have time to educate myself or get a second opinion before plunging into treatment. Many patients will acknowledge that they do the same thing.

My question is, why aren’t oncologists readily and without being asked referring their CLL patients, for example, to a CLL specialist—or a multiple myeloma patient to a specialist who only sees myeloma patients? Why are we patients doing the heavy lifting to get the best possible advice and outcomes?

I recently contacted two CLL patients in the Washington, DC area with whom I previously had spoken one-on-one to discuss their disease and resources. Rochelle, age 72, lives in Gaithersburg, MD. She was diagnosed with CLL in 2014.  On the strength of our conversation last year, she made an appointment with CLL expert Dr. Jennifer Brown at Dana Farber in Boston. 

Rochelle’s family is rife with CLL. She lost a brother and one sister to the disease.  Her mother survived for 30 years, as does another sister.  One niece has CLL.  Rochelle and her family are enrolled in Dr. Brown’s family study of the disease. 

Rochelle told me that her local hematologist was “shocked” when she announced that she would seek a second opinion.  She called him arrogant, especially when Dr. Brown’s extensive genetic testing pretty much validated what he had diagnosed with only blood work.  HOWEVER, he wanted to start treatment immediately.  Though Rochelle has developed non-CLL medical issues that require treatment, tests run by Dr. Brown showed that Rochelle has a more indolent form of CLL. She remains on watch and wait. She also reports that her local doc seems to take Rochelle more seriously and is much nicer to her than before she went for that second opinion.  Why did the patient have to work so hard? 

Amy is a three-year CLL patient who lives in Hagerstown, Maryland.  She saw a local general oncologist, not a hematologist/oncologist. He immediately put her on a chemo/monoclonal antibody regimen, which made her very sick.  During our two separate conversations, Amy was provided with at least six CLL specialists in the country, including Columbus, OH where she has family.  It was only after the chemo sickened Amy that her oncologist said he didn’t know what else to do and referred her outside his practice.  He sent her to Johns Hopkins, where there is no CLL expert. Amy said Hopkins is only an hour 15 minutes from home.  “That made sense to me because I (easily) could get there.”  Should she have asked more questions?  Maybe. What was the doctor’s responsibility to ensure treatment wasn’t a “one-size-fits-all” solution or trial by error?

I had sought two second opinions well after starting treatment. Both times my local HEM/ONC was abrupt, borderline rude, when I told him.  I later learned that his feelings had been hurt—a curious, troubling response when I’m the one with cancer.  My rush into an older treatment may have led to my eventual relapse and more chemo four years later.  I’ll never know.  Why does any patient have to work so hard to get to the right person for the right diagnosis and/or treatment?

We patients are thankful for the continuing flow of research dollars to increase knowledge about what makes these diseases tick and what may lead to a cure. But why does it feel as if the onus is on us to get to a specialist? Treatment access and affordability, educating patients is critically important. Who is educating the physicians? When will we patients without asking hear them say, “I want to refer you to a specialist who has more answers and options than me?”

After all, the next time my toilet leaks, I won’t hesitate to call the expert.

Wishing you good health and expert advice,

Carol Preston, Online Host, CLL Patient and Advocate