Surveillance, surveillance, surveillance!
from Cambridge, Massachusetts knows how to stick to her guns! She was diagnosed in 2001 with retroperitoneal
LMS. It was a struggle to get the
diagnosis. Alison went into the doctor's
office at least three times over a period of two years, telling him that she could
feel a lump on the right side of her abdomen. He examined her, but didn't seem
interested and couldn't feel anything. Finally, since the lump didn't go away,
she faked symptoms and told them she had intermittent fevers and nausea. They
sent her for an ultrasound. A follow-up CT confirmed there was a tumor. It was
taken out but with no margins.
surgery, she had an aggressive surveillance plan at Dana Farber Cancer
Institute. For the first two years, she
had scans every three months. Then she
graduated to six month scans for another three years. After that, five years from diagnosis and no
more tumors, the plan was annual scans.
seventh year, her doctor wanted to stop all CT scans completely. A reasonable suggestion for most cancers. But Alison knew that LMS was not like most cancers. So Alison refused. She continued to have her annual CT scans.
years, a few small spots in her lungs and a couple in her liver began to turn
up on the scans. The spots didn't cause
concern until 2012, eleven years from her original diagnosis. One grew significantly. She had it surgically removed by VATS. Due to Alison’s insistence on annual scans,
the metastasis was caught early. She’s
back to getting CT scans every 6 months now.
Alison do to thrive despite LMS? Alison
replied, “Laugh as much as possible. As
often as possible. I'm bad at exercise, but try to eat healthy food and not get
stressed out. Otherwise, I think I've
just been incredibly lucky.”
If you'd like to share your long term thriver story, contact Sharon 2SharonAnderson@gmail.com .
Sarah Salem-Robinson is a Stanford trained Physician Assistant with over 11 years of women's health issues specializing in OB/Gyn/Infertility with a pharmaco-psychiatric background. With her prior career/background as a Stanford clinical laboratory hematology/oncology scientist, she also has a strong foundation in laboratory research. An ULMS survivor herself, she wishes to contribute her knowledge to better the LMS community with the goal of creating more LMS awareness , finding more effective treatments and a cure to this devastating disease. Sarah lives in Los Altos, California.