Lori Cuffari: Surviving Hurthle Cell Cancer Thanks to Clinical Trials
Millstone Township, New Jersey
I was diagnosed with Hurthle cell cancer, a rare type of thyroid cancer, in 2008. After surgery, my doctors told me it was likely that the cancer had spread, and sure enough, just a few months later, tests showed that it was in my lungs. Since then, I’ve participated in a number of clinical trials, most recently a trial testing a drug called lenvatinib. I’m still taking lenvatinib and I feel great, I’m finally regaining the weight I lost during earlier treatments, and I’m doing everything I can to pay it forward—participating in clinical trials and advocating to increase awareness about cancer and the importance of cancer research.
My experience with cancer began very suddenly. One spring day, in 2008, I was sitting at my desk on the phone, ordering lunch for an upcoming presentation, when I ran my hand down my neck and felt something. When I looked in the mirror I couldn’t see anything until I tilted my head back and all of a sudden I could see a huge lump on the right side of my neck. I immediately called my primary care physician and told them I was coming in right away.
The physician told me it was probably just a goiter but sent me for a fine needle aspiration biopsy anyway. The results of the biopsy suggested Hurthle cell cancer. I was shocked; hearing the word “cancer” makes you stop in your tracks, but I was determined to get through it. In addition to seeking treatment, I decided to eat even more healthily and start exercising more; yoga in particular has really made a difference for me.
As soon as I was diagnosed, my husband and I started searching for a surgeon. We met with a number of people before finding someone I really connected with. I had the right side of my thyroid removed, where the tumor was, but after they analyzed the tumor and confirmed that it was Hurthle cell cancer, I had a second surgery nine days later to remove the left side of my thyroid.
Because the analysis of my tumor had shown extensive vascular invasion [a large number of blood vessels in the tumor] I was told that it was very likely to have traveled to other parts of my body. So my surgeon referred to me to an endocrinologist at Memorial Sloan Kettering Cancer Center in New York.
Initially, there was no obvious cancer in my liver, lungs, or bones [the sites that thyroid cancer most commonly metastasizes to] so we just watched and waited, which was very scary to me. But by December 2008, it was clear that there were tumors in my lungs. My only option was to consider clinical trials.
Over the next year, I participated in two phase I clinical trials at Memorial Sloan Kettering Cancer Center. I felt great and was able to go about my normal life, but the physicians told me that the cancer was going to keep creeping up on me and that clinical trials would continue to be my path.
My husband found a clinical trial at the University of Pennsylvania that sounded promising, and minutes after I reached out to them by email, Dr. Brose called and told me they had solutions for me. I first participated in a trial testing sorafenib (Nexavar) and then a trial of sorafenib and everolimus (Afinitor), which benefited me for four years, although my diet while receiving sorafenib was very restricted and I hovered between 90 and 100 pounds all four years.
Then, in June 2014, I stopped taking the drugs because of low potassium levels. Within a couple of weeks, a tumor appeared in my ocular muscle. After consulting radiation and surgery specialists, I had 25 rounds of proton therapy. This was followed by an excruciating four-month wait to get a spot on the lenvatinib clinical trial, which Dr. Brose felt would be best for me. The cancer was becoming visible on my body and I began to wonder if this could be it. But since I started lenvatinib, in November 2014, the cancer is no longer visible and I’m living a normal life, eating what I want, and looking toward the future.
Down the road I may need other treatment options, but the cancer research world is doing amazing things and I know that new treatments will become available. Clinical trials are essential if these treatments are to become a reality. I feel an obligation as a cancer patient to participate in clinical trials; in doing so I am helping make a difference to the future of cancer care.
The AACR was saddened to learn that Lori Cuffari passed away on March 17, 2017. We are deeply grateful to Lori for sharing her experience with cancer in the AACR Cancer Progress Report 2015 to help educate others and advocate for continued funding of cancer research. We send our sincere condolences to Lori's family and friends.
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