Af t e r I w a s d i a g n o s e d w i t h leiomyosarcoma, it was very hard to find a medical oncologist who specialized in treating sarcoma.
Eventually, my daughter found someone at the
University of Pennsylvania, which is close to
her home. He has guided me through numerous
treatments over the past 6 ½ years, including, most
recently, a new chemotherapy called trabectedin
(Yondelis). It has worked so well that I’ve been
given a vacation from treatment. For now, I feel
wonderful, emotionally and physically. Life is good.
In December 2009, just after a few days of having
pain in my lower pelvic area that wouldn’t go away,
I went to my primary care physician who ordered
a CT scan and MRI for that very day. The tests
showed a mass of some description in my lower
pelvic area, so I had surgery 17 days later, not
knowing exactly what it was.
When I came out of surgery, the doctors had
already told my husband and family that I had
cancer and that pathology would determine what
type. My diagnosis was leiomyosarcoma. I was
devastated. I couldn’t do anything. After I came
home from the hospital, all I could do was stare
out the window. I was convinced that I would die
My husband, children, sister, and church friends
were a huge support, and I was eventually able to
come to terms with my diagnosis.
After the surgery, I saw a local radiologist and
had 28 radiation treatments. When she told me
that she saw about one person a year who had
leiomyosarcoma, I realized how hard it would be
to find an expert in treating this disease in my area.
My daughter, who lives in the suburbs of
Philadelphia, found a sarcoma specialist at the
University of Pennsylvania, Dr. Arthur Staddon.
The first time I saw him, he told me the disease
was not curable but that it was certainly treatable.
It was the first time I had felt optimistic about my
future since my diagnosis.
Over the years, I have received many different
treatments. Initially, I had CT scans every 3 months,
These treatments were followed by another
period of monitoring my disease with C T scans,
which eventually showed further growth of tumors
in my left lung. I started a course of chemotherapy
with doxorubicin (Adriamycin). Following that
treatment, I had surgery. After a year or so, I had
another major lung surgery to remove numerous
tumors in my right lung. Four months later,
I had cryoablation, microwave ablation, and
chemoembolization to destroy tumors in my liver.
In January 2016, I started taking trabectedin,
right after it had been approved by the FDA. After
just three treatments, a CT scan showed there
were no new tumors, and the existing tumors had
shrunk. Three more treatments later, the scan
revealed more significant improvement, including
showing that some tumors had decreased in size
even further. Because my most recent CT scan
indicated additional improvement, Dr. Staddon
recommended I stop taking trabectedin for
a while. I will have another scan in September
. Depending on what that shows, we will
make a decision about whether to restart treatment
with trabectedin or continue without treatment.
One great thing about the trabectedin treatment
is that I was able to receive the 24-hour infusion
at my daughter’s home, rather than receiving it
in the hospital. It is so much more pleasant to go
through the chemotherapy infusion in a familiar
environment with my family around me. It helped
me keep a positive attitude, which makes a big
difference to me.
I am really grateful for all the treatments that
have kept me alive for the past 6 ½ years. The goal
of a patient with cancer is to live long enough to be
around when the next new drug is developed. The
only way that is going to happen is with further
research and the funding that supports it.
NANCY MCGUIRE // AGE 70 // GREAT F