I was diagnosed with Buccal Squamous Cell Carcinoma in 2005. I worked in oncology research at a major university institute. I had chemotherapy and radiation treatment for 6 weeks, including a week in the hospital and radiation 3 times a day. I knew what to expect, so the burns on my face and the sores in my mouth were not a shock.
In 2010, I had radical flap surgery due to mandibular osteomyelitis. They removed my fibula, and my fibula bone is now part of my jaw.
In 2024, I was diagnosed with a rare variant of SCC, carcinoma cuniculatum—the second person at a major Chicago research medical center to have it. MRI, CT, and PET scans of my face showed inflammation. This cancer burrowed into my membranes and then came out of my cheek as an infection. After I had numerous abscesses in my cheek, I was immediately admitted, and during surgery is when they found the cancer. I had three months with a PICC line, administering antibiotics to myself 3 times a day. I had another radical 16-hour surgery on 7/24.
On 9/25, I had the Signatera blood test. It came back positive but below the analytical range. MRI and PET showed thickening in my membranes but no mass. A biopsy confirmed the extremely rare cancer.
Surgery is out of the question because of the location, and half my lip would have to be removed. Hopefully, I will start on Keytruda very soon—I’m just waiting for some test results to come back.
I have had a journey. Yes, I have had dry mouth for years and definite trismus, but I am so thankful that I have been able to see my grandchildren grow, that I am still able to bake, cook delicious meals, and go out with friends and family. I will not give up fighting. People say, “You are so strong.” No—I don’t have a choice. I will not let cancer take my spirit away.
Cindy
IN
Submitted 11/23/2025
This story is intended to convey a personal experience and should not be relied upon as a substitute for professional medical advice.
