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Cancer clinical trials: Why I chose to participate, but so many others don’t

question-63916_1920When I was 29 years old, I was one of the healthiest people I knew. I biked 10 miles to work, played ultimate frisbee, slept at least eight hours each night and ate nutritious, organic food. And then I found an enlarged lymph node in my neck.

My life suddenly became a whirlwind of doctor appointments and diagnostic tests: chest X-rays, blood tests, CT scans, a lumbar puncture, lymph node biopsy and a lymphangiogram. The tests showed another enlarged lymph node near my heart, and I was diagnosed with stage IIA Hodgkin’s lymphoma.

Unbelievably, I had cancer. I was faced with scary medical decisions that could impact both my survival and fertility. How do you make those kinds of decisions? As a scientist, I immediately started researching Hodgkin’s and talking to medical experts.

According to my physician, the standard treatment for stage II Hodgkin’s entailed exploratory abdominal surgery in order to biopsy my organs and check for further signs of the disease, as well as removal of my spleen. This would be followed by radiation therapy to my chest and neck.

Most people choose the standard treatment — it’s the gold standard for a reason, right? However, I wasn’t convinced that I wanted the surgery, because my diagnostic tests showed no sign of the disease below my diaphragm. I didn’t want to unnecessarily lose my spleen, which plays a vital role in the immune system by filtering blood and fighting certain deadly bacteria.

Luckily, my physician recommended another treatment option: a Hodgkin’s clinical trial at the Stanford Cancer Institute. This phase III clinical trial was testing whether a specialized chemotherapy cocktail was more effective at treating stage II Hodgkin’s than the standard abdominal surgery, and the investigators’ previous clinical trials had shown excellent results with similar chemotherapies.

So I stuggled with whether I wanted radiation therapy combined with exploratory surgery or chemotherapy — both were scary and both would have long-term side effects. However, it wasn’t really my decision. I could only decide whether or not to enroll in Stanford’s clinical trial, and then the treatment option would be randomly selected for me. Eventually I decided I could live with this lack of control, because both treatments were going to be effective.

People typically participate in a clinical trial to “advance medicine” or “improve the lives of others,” according to the Center for Information and Study on Clinical Research Participation. While I was happy to contribute to scientific research, I enrolled in the clinical trial for myself — to get the best care. I knew that other study participants came from across the world to Stanford since it was one of the premier places for Hodgkin’s treatment, and I lived just five miles away.

I was fortunate in many other ways as well; I had personal health insurance. I also had flexible hours as a research scientist and could work full-time during treatment, so I didn’t have financial worries. In addition, I was used to communicating with doctors as peers, so I didn’t fear being a 'guinea pig.'

These types of barriers — limited access to trials, financial concerns and trust issues — prevent many people from participating in clinical trials. Nationwide, only about 3 percent of adults with cancer participate in clinical trials. As a result, about 40 percent of all oncology clinical trials fail to meet their minimum patient enrollment, which has a major impact on cancer research.

Researchers use many tactics to attract trial participants, and in an upcoming post, I'll share what I learned about Stanford's efforts to boost the enrollment of minorities in its oncology clinical trials.

Previously: Clinical trials: My next good chance and NPR explores the need for improving diversity in clinical trials
Photo by geralt

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