column logo Alithea Athans

One of the scariest things your doctor can tell you is the reason for a bone marrow biopsy is to rule out cancer. I have cold agglutinin disease (CAD), a form of autoimmune hemolytic anemia. It is common to have all sorts of tests performed after your initial diagnosis through blood work. Afterward, it is a multitude of tests to rule out an underlying cause. In my situation, they initially felt it was due to mycoplasma pneumonia for which I have antibodies. However, since it did not subside, I have now been determined to be a primary CAD patient.

Cancer is one of those words no one wants to hear. Unfortunately, it runs rampant in my family on both sides. It has appeared in many different forms but the one that directly concerns me is lymphoma. Two family members both have follicular lymphoma, which I have come to understand is highly treatable. This past year one of them also developed an aggressive form of large B cell lymphoma and for the first time required treatment. He had a fantastic medical team that was able to identify it right away and treated it successfully. 

What I did not realize until recently is that one of the cancers they look for in CAD is lymphoma. Thankfully when they did all the testing almost 2 years ago, they found none. What concerns me most is if a form of lymphoma is often an underlying cause of CAD, and it runs in my family, am I more at risk of eventually developing it?

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Several months ago it was suggested that I meet with a genetic counselor due to my family’s high incidence of cancer. My medical team felt I would be the perfect candidate for it. I did have a video meeting with a helpful lady from a local cancer center. We reviewed my history and my extended family’s history; she was quite thorough. It was an enjoyable conversation and she explained how genetic testing worked and how we could accomplish that. At that point, I was positive that it was something I needed to do, especially since I already have an autoimmune disease. It was necessary to be prepared in the event a mutated gene presented itself. 

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What I learned next is insurance does not pay for genetic counseling and quite possibly not genetic testing. Without insurance, the counseling was a couple of hundred dollars and the testing would cost about the same. They intended to test 67 genes. There is molecular genetic human leukocyte antigen (HLA) determination. It’s a tool used in the diagnosis and prediction of autoimmune disease risk. CAD is not hereditary, and we know I already have it. So that was out.

At this point I was onboard, but then I was informed that it’s not that simple. I needed to know about the implications of such testing. Apparently, when you have genetic testing, insurance companies can drop you or raise your rates. If that was not concerning enough, the companies I will refer to as gap insurance for health will either not approve you or charge an exorbitant amount. I found this to be astonishing. 

I do not understand why this would be. There is more of an upside to knowing what you are predisposed to than not. Do not get me wrong, I am sure it would also cause stress of knowing as well. I felt that if I found a hereditary gene for cancers, then I would have more options. It would simply mean that I could be watched by a specialist and catch something in the early stages. I would think that insurance companies would want you to find out early; if nothing else, it potentially saves them money and, more importantly, quite possibly saves a life.