This is the story of my sister Carries recent diagnosis with a rare form of sarcoma. She was recently living in Iowa, with her husband Kevin and 5 year old son, Aiden. She had been suffering from some lower back discomfort, that she attributed to a previous diagnosis of a pilonidal cyst in 2002, and had a
complicated course of healing. As a result, she had been told that she would always have some form of residual pain. Over the last several months, her pain worsened. She was suffering from numbness in her right leg, and would often have to shift positions while sitting, to maintain comfort.
Due to the persistent pain, she decided to follow up with her Primary care doctor in Iowa. Upon exam, he felt her pain could be related to a recurrent
pilonidal cyst. He then recommended, she follow up with a colorectal surgeon. She then met with a colorectal surgeon, who upon exam noted a lump in my sisters lower lumbar region. This prompted a CT scan to evaluate further. The CT scan showed a concerning, large mass in her sacral area. Due to the
concern, this warranted a MRI scan. The MRI again confirmed this large mass of concern. The colorectal surgeon, reviewed the scans with their Sarcoma team, and felt this could be a rare form of sarcoma, and recommended that she proceed to Mayo to see a Sarcoma specialist.
My sister contacted me, and we decided she proceed to meet with a Sarcoma team at St. Lukes Medical Center. Upon our meeting with them, it was
decided to proceed with a CT guided biopsy to confirm a diagnosis. Then on 1/31/17, Carrie underwent this biopsy. The pathologists at St. Lukes wanted to send the tissue off to Harvard, to review further. After a daunting almost three week wait after the biopsy. A diagnosis was confirmed, Extraskeletal Myxoid Chondrosarcoma. A very rare sarcoma, that affects less than 1% percent of sarcoma patients.
We again met with the team at St. Luke's to discuss treatment. It was recommended that she undergo 5 weeks of daily radiation to the tumor, then surgery.
Carrie elected to have a second opinion. Then on, Wednesday March 8th, we met with the Sarcoma team at Froedtert.
After many nights of worry and loss of sleep. Carrie decided to proceed with treatment at Froedtert. Her treatment will consist of 5 weeks of radiation, with a 4 week break, to allow the skin to heal, then surgery. Her surgery is quite extensive, and as we have been told, it may take an entire day, with the possibility of second day. We were counseled regarding all of the scary surgical risks, but know that this is her only option in beating this. Her surgeons discussed with Carrie, that the surgery would ultimately change her life, leaving her with potential deficits of unknown nature. Such as difficulty walking, using supportive devices to assist with walking, possible colostomy, blindness from being in the position required for surgery, high risk for infection,
even death due to the extensive nature of the surgery. Carrie has recently moved back in with our parents, in Franklin, along with her son Aiden. He
has since been enrolled and began school, to continue with his year in Kindergarten. She left her job in Iowa, to meet the demands of her needed
treatment. Carries husband Kevin, will continue to work in Iowa, to maintain the insurance, and drive the 6 hours to be with my sister and their son
This will truly be a grueling, financial, emotional and scary journey for Carrie and her family. I am hoping by sharing her story, this will bring awareness
to the awful disease that we know as Cancer, and hope we can come together and help alleviate some of the financial strain, that Carrie and her
family will endure.
Help spread the word! https://www.gofundme.com/carries-cancer-journey