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
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.
Lori cuffari // age 51 // miLLs Tone To WnshiP, ne W Jerse Y
Cell CAnCeR thAnKs to