Educator/Administrator, San Luis Obispo County Office of Education
and HPV-attributed Oropharyngeal Cancer Survivor;
San Luis Obispo, CA
In the late summer of 2013, Ellen noticed a lump on the right side of her neck and thought it was something unusual but nothing concerning. Her life was full with two children in college, a busy husband and caring for her mother whose health was beginning to decline. Ellen was also working full-time and serving as an elected member of the local school board.
In late September, she developed a sore throat. Strep throat had always been her body’s way to signal she needed to slow down so Ellen went to her primary care physician for a strep test and antibiotics. Her physician prescribed the antibiotics for an infected gland, advised that the lump may not be related to the strep and recommended a follow-up appointment. Ellen did inquire about the cause of the lump and was informed it could possibly be an infection and/or cancer.
The strep throat seemed to heal, and Ellen returned to her daily hectic life. Her mother was diagnosed with radiation-induced dementia from earlier treatment for non-Hodgkin’s Lymphoma, and Ellen made the difficult decision to place her in a memory care facility.
The lump on her neck was not painful, so Ellen disregarded it and focused on her daughter’s impending departure to a remote island in the Pacific to do research and her son.
By January of 2014, Ellen realized that the lump was slowly increasing in size although it remained fairly unnoticeable. She returned to her doctor, who ordered a CT scan. The results were suspicious for cancer and she was referred to an ENT.
Shortly after returning home from visiting her physician, Ellen received a call from the ENT’s office, who had scheduled an appointment for her that afternoon.
“I believe my primary physician saved my life. She understood that I was busy and had things to do and places to go, so she called the ENT herself,” explained Ellen.
When she learned that the doctors were now treating this as such an urgent matter, Ellen asked her husband, Michael, to accompany her to the ENT appointment. Her cancer journey began that afternoon when a needle biopsy confirmed that she had HPV-16 oropharyngeal cancer.
“I’m female, younger than the average patient, never smoked, and very rarely drink. I did not fit the profile, but cancer doesn’t keep up with that data. I was Stage IV (b),” added Ellen.
Ellen underwent surgery for a tumor on the back of her tonsil, eight Cisplatin chemotherapy treatments, and 28 rounds of radiation. In all, she lost 40 pounds and was very ill.
She now lives with the treatment side effects: extreme xerostomia, atrophying of her salivary glands, fragile bones, and most foods now taste offensive, which extremely limits her diet.
As a public and very social person, Ellen’s life has certainly been impacted. She wishes there was more research on the quality of life after cancer treatment, especially as cancer treatments are successfully contributing to a greater lifespan.
Ellen has great respect for caregivers and for four years facilitated a caregiver support group through Hearst Cancer Resource Center in San Luis Obispo, “As I tell them, the cancer patient cannot avoid being around herself or himself, but the caregivers could bail anytime. They choose to be with us and, as far as I’m concerned, are real heroes during this journey.”
Ellen also works with Cancer Connection, an organization that matches cancer survivors with patients diagnosed with same cancer. She is also participating in a study at the National Institutes of Health for Xerostomia sufferers.