Birthday: September 29, 1967
Diagnosis Date: 2006
Type of Sarcoma: Malignant Peripheral Nerve Sheath Tumor
Tumor Site: Upper Thigh
Age at time of Diagnosis: 38 years
The University of Chicago Medical Center
In 2001, I noticed a very small bump on my upper thigh. It didn't hurt and didn't seem to
grow and I discounted it as nothing as it was not near a major organ. In 2004, I had my
third child and noticed after her birth, the small bump had started to grow yet still I
delayed a Dr's visit as this lump was not painful and I did not exhibit any of the traditional
cancer symptoms. When the lump became too large to ignore, I gathered up some courage and made
a Dr. appt. I was hoping that a general surgeon could simply remove it and life would progress
as normal. How wrong I was. After several referrals to several physicians who I left scratching
their heads, I was sent for an X-Ray, biopsy and CT scan. I was diagnosed with Sarcoma on
May 5, 2006. I'll never forget the phone call. The Dr's voice was flat and matter of fact.
'You have Sarcoma. It's a kind of cancer.' While I digested the words, he rambled off the name
of a specialist he knew of at a nearby clinic. I was shaking as I wrote down the info. I was
fortunate. The Dr. who diagnosed me worked with a Sarcoma Specialist during his medical school
training. Sarcoma was on his short list of possible diagnosis and he took the right steps.
The surgeon, redid the pathology and I was initially diagnosed with low grade Fibrosarcoma.
He recommended 5 weeks of IMRT (radiation) followed by limb sparing surgery and tumor removal.
We received positive margins during surgery and therefore, I returned to the hospital for 15
more radiation treatments. Due to the grade, further treatment in the form of chemotherapy
was optional. The final pathology indicated that the tumor was not a low grade fibrosarcoma
but a similar tumor molecularly, MPNST. In retrospect, I would have preferred the LG Fibro.
MPNST is chemo insensitive and often aggressive. I opted to watch and wait and I had Ct scans
every 6 months. During the 2-year scan, we discovered lung mets. A lung biopsy confirmed what
we already suspected and as there is no treatment for Low grade MPNST, I was placed in a
clinical trial for a new targeted therapy called Brivanib on January 14, 2009. WE received
initial reduction and then stability. I am currently stable for the past 7 months.
During the surgery, it was discovered that one of my quadriceps along with the affected nerve
could not be saved. I had very limited use of my right leg and physical therapy was prescribed
for me but we could not begin until I was out of danger of infection and the wounds were healed.
My scar extends from the top of my right knee to my naval. Due to the size of the tumor, the Dr.
installed a mesh that is screwed into my right hip to prevent organs and tissue from descending
into the hole created by tumor removal. They used the removed muscle tissue to fill the hole
and a skin graft from my right thigh covered the surgical area. I woke up in ICU attached to
IV's and a wound vac, which enabled the graft to heal more efficiently and reduced the risk
of infection. I was on bed rest for 48 hours and in ICU for 24. PT in the hospital consisted
of getting me out of bed and learning to walk with a walker. After 10 days in the hospital,
I was sent home to the care of a home nurse and a physical therapist who worked with me further.
I did light exercises and learned the art of walking up and down stairs with a cane and eventually,
I was able to walk without the cane. IN February, I started intense physical therapy and Lymphedema
treatments. The surgery resulted in the loss of many lymph nodes and blood vessels. I developed
secondary lymphedema, which I needed to learn how to manage. I finished PT in July 2007. I regained
about 80% of my leg function.
I am living WITH Sarcoma. As it is now Stage 4, there is a slim chance that I will ever be cured but
my Dr. feels that it can be managed as a chronic condition. My quality of life is VERY GOOD. I feel
GREAT. I have done many things to change my diet and lifestyle since my diagnosis and feel very strongly
about the role of nutrition. It is a huge huge part of my cancer kicking toolbox. Though my leg is
compromised, I bowl in a league. I can walk about 3 miles before I begin to tire but running is not
something I can do easily. I still enjoy all my previous hobbies, family time, good books, laughs,
hopes, and dreams for the future. My outlook has changed. My attitude has changed. My focus has changed.
I don't know if I will ever get used to CT scans, MRI's and Dr's but it is only part of my life. It is
NOT my life. I will do whatever I can to educate, promote awareness and fund research for Sarcomas. I
will live my life as if I have all the time in the world because I just might.
Keep fighting and don't worry about the odds. Each case is individual. Diagnosis and treatment is scary,
downright terrifying but Cancer can be a good teacher. Use it to redefine your life, re-prioritize, and
re-focus and most of all, tell your story. Tell it to everyone. Write it. Blog it. Never stop telling it.
I walked around for 5 years with a cancer I had never ever heard of until the day of diagnosis. Your words
can save a life. It's the most powerful weapon against this cancer we have.
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