Breast Cancer Advocate Ginny Mason: Her Story
Ginny Mason was only forty years old when sharp, shooting pains started in her breast. She thought the pains must be part of premenopausal changes. Then she noticed her bra didn't fit right. No it couldn't be swelling; maybe her bra was just old and stretched out. "You try to justify things because you don't want to be a hypochondriac," she told me in a recent interview.
Then her husband told her, "Your breast looks sick." She saw the doctor who ordered a mammogram. When the technician told her it was fine, Ginny did something uncharacteristic for her; she spoke up and insisted that the doctor examine her. Ginny, a licensed practical nurse, was used to accepting doctors' authority, but she knew something was wrong and that she needed more information.
Her primary care physician said she had nothing to worry about but sent her to a surgeon in case she had a cyst that needed draining. However a combination of factors delayed her appointment with the surgeon for six months. On a Friday in March, 1994, she received the results of her biopsy. "The doctor came in and took my hand. I knew it wasn't good," she said. Ginny had also been undergoing tests for a gall bladder problem and assumed the doctor's expression meant that she was going to need gall bladder surgery.
Instead he told her, "You have a very aggressive breast cancer, inflammatory breast cancer." In fact, the doctor wanted to start chemo that very same day. Her prognosis wasn't good; even with treatment she would probably live only twelve to eighteen months. Once again, Ginny found the courage to tell a doctor, "No"
She hadn't had any idea that the worsening problems in her breast could be cancer. There was no way that she was going to call her husband and tell him she needed a ride home from the doctor's office because she had just completed her first chemotherapy treatment for a deadly cancer. If this hadn't killed her in six months, two more days of waiting wasn't going to make a difference.
She agreed to start chemo on Monday. Then she went back to work and finished out the day. It was raining on her forty-five minute drive home from work. She spent every minute trying to process the news the doctor had given her struggling to find the words to tell her husband.
After all that careful orchestration of the best way to break the news, she went inside and blurted out, "I have cancer, and I'm probably going to die." The rain poured down outside as they cried and tried to understand how this could have happened to a forty-year-old with no family history of breast cancer. What would this mean for them and their children?
When they were all cried out, they looked up and through their window saw the most beautiful rainbow stretched across the sky. That's when they knew that it would be OK. To Ginny and her husband, "OK" did not mean that the treatment would work and that she would be cancer free. It meant that they would find the faith and strength to cope with whatever happened.
They spent the weekend getting ready for Monday's first chemo. A church friend came and cut Ginny's shoulder-length hair into a short style to make it easier for her eventual hair loss. A religious ceremony gave her peace to face what was ahead.
Walking into work on Monday with her new short hairdo provided the conversational entry to tell her coworkers that she would miss work that afternoon for her first of several chemo treatments. She wanted to be open about her illness.
When her cancer didn't respond to FAC chemo, her doctors in central Virginia consulted with doctors at the National Cancer Institute and added extra chemo. When she had her mastectomy, doctors discovered that she had actually had three kinds of breast cancer in one breast: IBC, invasive ductal carcinoma, and mucinous carcinoma. The doctor decided that a radical mastectomy rather than the more usual modified radical mastectomy was necessary if she was to have a chance at long-term survival.
Ginny worked throughout her treatment. She wanted to keep her life as normal as possible, and she needed to keep her health insurance. She had always wanted to finish her nursing education, so while still in treatment and still working, she went back to school and got her Registered Nurse certification. Then since she was still alive and exceeding the doctors' original expectations, she began work on her Bachelor's degree in nursing.
Understanding coworkers, friends and family helped Ginny get through her treatments, but she felt isolated because she didn't know anyone with IBC. When Pete Bevin and his late wife Menya started an on-line support group for IBC patients and caregivers in 1997, Ginny found people who understood what she had been going through.
She felt a special connection to the concerns of Owen Johnson, a widower from Alaska who was convinced that research into IBC was the missing step in the fight against it. When Ginny and her husband planned a trip to Alaska to celebrate five years of survival, she wanted to meet Owen while they were there. Her family was concerned about her meeting someone she knew only from the Internet, and later she found out that his family had the same worries about his meeting her. When they met for lunch, they realized that they had the similar ideas about how to save women's lives from this deadly disease.
When Owen started the IBC Research Foundation, Ginny was on board with ideas and volunteer time. Today, she is the Executive Director of the IBC Research Foundation, and she has connections throughout the cancer community.
She currently serves as the consumer representative on the FDA Oncologic Drug Advisory Committee, which advises the FDA on approval for new cancer drugs. Most of the other committee members are oncologists. The nursing degree she earned when she wasn't even sure she'd survive long enough to use it gives her the background to understand the complicated research data on the proposed drugs. The courage to challenge her doctors that she developed when she realized that her doctor wasn't taking her "sick breast" seriously enables her to speak for consumers as the committee considers the efficacy and safety of new drugs.
Ginny's schedule these days is a whirlwind of meetings with researchers and cancer advocates. Despite a few treatment-related side effects, there has been no evidence of a return of the cancer. The sign of the rainbow was true: her illness did turn out OK, more than OK.