Hi! I’m Christina. I was a perfectly normal twenty-something until I developed a grapefruit-sized tumor.
On February 13, 2018, I received a diagnosis of desmoid-type fibromatosis. I created this blog in an effort to raise awareness for this disease, connect with others with the same diagnosis, and keep my family and friends informed about my treatment.
My diagnosis process began in January 2017 when I noticed a decreased range of motion in my right shoulder. As a yoga teacher and practitioner, I challenged my range of motion and strength daily by playing with arm balances and handstands. The decreased range of motion became soreness and occasional pinching pain. In the early spring of 2017, I went to a friend of mine who is a physical therapist. She took a look at my muscular structure and yoga practice and suggested that it might be impingement. I started doing physical therapy exercises daily.
By June, while I was seeing slight changes in pain, my range of motion had not improved. In the final weeks of school, my co-worker mentioned that an area by my collarbone looked swollen. A former massage therapist, she suggested icing the area. When this did not improve my swelling, I made an appointment with my primary care doctor, who sent me to get an ultrasound and a chest x-ray. The x-ray came back clean and the ultrasound revealed a lipoma in my chest. I was assured by the ultrasound technician and my primary care physician that it was nothing to worry about. This was welcome news, as I was planning to walk 500 miles of the Camino de Santiago, a religious pilgrimage from France to Spain. I went to Spain, had the adventure of a lifetime, and scheduled a consultation for the fall.
Diagnosis 1: Lipoma
In September, I was seen by a general surgeon and underwent surgery on September 29, 2017 to remove the lipoma. When I came out of surgery, I was heartbroken to learn that the doctor described the surgery as “confusing.” During the surgery, no lipoma was located. After checking deep into the muscle and beneath the pectoralis, the only finding was “reactive tissue.” This tissue was sent for biopsy and I was sent home: bruised, aching, and angry. I followed up with the general surgeon after the procedure and was told the biopsy came back as “reactive tissue” and “lipoma.” He instructed me to take 400 mg of Advil four times a day, come back in two weeks, and see an orthopedic surgeon. I scheduled with an orthopedic surgeon who had operated on other family members; he referred me to a physical therapist. I began physical therapy and saw minor improvement in pain.
As a brief, but important interlude: in mid-November, I cut my thumb open on an aluminum can while making my morning smoothie with pumpkin. (When it rains, it pours.) When I got my six stitches at urgent care, the doctor who cared for me asked about my shoulder. After describing my situation, he shared that he was a Cardio-Thoracic Surgeon by trade and he suggested I see a surgeon within that specialty.
Diagnosis 2: Hematoma
By December, I was still tired, angry, and in pain. I went back to my primary care physician, who suggested an MRI and seeing University healthcare. I was able to make an appointment with an orthopedic doctor at the University of Pennsylvania. His request for an MRI went through, and I got the last available appointment in 2017. In early January, the MRI was read, and I was informed that it was a hematoma, likely caused by the surgery I had in September. It was then that I was referred to a Thoracic Surgeon.
January 31, 2018: The C-Word
The appointment with the thoracic surgeon changed my life. He had the results of the MRI read by a University radiology specialist, who held the opinion that the growth was not a hematoma, but likely sarcoma. So began the longest two weeks of my life. In between trying not to worry, I had bloodwork, a contrast MRI, and a CT scan of my chest. A biopsy was completed to compare with pathology slides from the previous biopsy in September. There was nothing to do but wait.
On February 15, I got the call that my pathology was completed and I had desmoid-type fibromatosis. While it was devastating news, it was nothing compared to the excruciating waiting period. I felt validated in the knowledge I had all along: that something was off with my body. I felt restless in the previous months, trying to embrace each new diagnosis and treatment to no avail.
While it was not the news I hoped for, it was an answer: the name of an adventure I’d be undertaking.
PS: This is not the first time I have blogged. You can check out my gratitude project, Project Thankful Heart, here.