Published on May 7, 2019
This year, about 20,000 people in the United States will sit down with a doctor and be told “you have chronic lymphocytic leukemia.” Maybe 19,950 of them will then ask, “what’s that?”
I had that conversation twelve years ago, after a physical exam and blood test. My primary care doctor called and asked me to come in and repeat the blood test. We were watching my cholesterol - It’s what my father left me in his will, so I didn’t give it any thought. I went in, rolled up my sleeve and watched them take a tube of blood. Then a hematologist sat me down and said, “CLL is treatable but not curable, come back in four months and we’ll do another blood test.”
I felt fine, there was nothing wrong, how can you tell me I have cancer? All he said was, “come back in four months, we’ll do another blood test.” I kept asking for an explanation and he kept saying come back in four months. I wanted to know if I was going to live or die, and if so when. He didn’t go so far as to call CLL the good cancer, but he did say “you know, internists, they hear cancer and they get all excited.”
Yeah, I can see that.
It was clear I wasn’t going to get any answers that day. I would like to say I calmly and methodically researched and meticulously laid out a plan of action. I would like to say that. The truth is, I pretty much freaked out. I was 55 and started thinking about early retirement. I called my wife, she peeled me off the ceiling, and we looked online.
Now, I’ve always looked at science as a subject to be avoided. I took just barely enough science credits in college to meet the minimum requirements, put in the minimum effort to get through them, and that’s the last thought I gave the subject. That brought a particular challenge to trying to learn about CLL online. Most of the material I found at the time was filed as papers aptly called “abstracts,” and that would be fine if it weren’t so real and decidedly non-abstract to me.
In the midst of all that, a name kept cropping up; a CLL specialist who was not only in my city but was only about five miles from my house. I called for an appointment. After that, there was only one other thing to do. I fired Doctor Comeback. I did not go back to him in four months, or at all.
It meant changing my healthcare provider in order to keep my insurance “in network,” and starting fresh with a different primary care doctor and a whole new process for anything else I needed. It is the best thing I’ve done for myself, medically at least. I knew from that first appointment that there would be a plan and a team of people who would know my case.
“Watch and wait” made sense to me now. My doctor communicated and explained the disease in terms I could understand. In a year’s time, we decided treatment was warranted. I understood the reasons and the options available to me. In 2008, I had six rounds of FCR (fludarabine, cyclophosphamide and rituximab [Fludara, Cytoxan and Rituxan) chemotherapy, and got a complete response. I not only had confidence in my specialist and the team, but it so happens this cancer center is one of seven in the country that belongs to the CLL Research Consortium. Because of that, I got access to clinical trials that I would not have had otherwise. In 2014, with consultation from my doctor, I enrolled in a clinical trial of venetoclax and Rituximab. I finished that trial MRD-negative and have not taken any CLL-related medication for two years, so far.
It is easy to think that if you are seeing an oncologist, you are seeing a specialist. But a community oncologist will see more breast cancer and lung cancer patients than blood cancer patients. That is why you want to see a doctor who specializes in the treatment of your cancer. You have to put yourself first.
If you do not have the benefit of having a CLL specialist within walking distance, you want to consider periodically traveling to see one, and talk with the community oncologist you do see about consulting with that specialist about your case. After all, they work for you. Be proactive.
What I have learned is that managed healthcare means managing your own healthcare.
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All in all we were very glad we took the time to drive to Tampa from the other coast of Florida and would gladly do so again. Thank you for your part in putting this together for us CLL patients.