In 2000, Kathy Gill participated in a 6,000-mile motorcycle fundraising ride for Susan G. Komen Foundation, not because she had been affected by breast cancer personally, but because it felt right. She did most of it solo and as a fairly new rider. Along the route, people stopped her to tell her their personal stories of breast cancer and to thank her for raising awareness. Through this ride and the group of riders she joined, called WetLeather (it is a Seattle group after all), Kathy developed lifelong friendships, and met her husband, Michael. She also became a motorcycle safety instructor.
Unfortunately, in 2011, she was diagnosed with a type of breast cancer called lobular carcinoma in situ, which is considered precancerous. Lobular breast cancer is less common than the ductal variety. “Lumps are common in ductal breast cancer, but lobular cancer typically does not form a tumor that can be felt like a lump,” explains Kathy, who has researched the subject extensively and has blogged frequently about it. “Instead, with lobular cancer, part of the breast may feel like it has become thicker. Often, however, there may be no physical symptoms.”
For six years, she went in for a scan every six months. Then, in 2017, her radiologist thought she had found something. “The general consensus was that it would be small,” recalls Kathy. Still, she went to speak with her brother-in-law, Dr. Jesse Fann, psychiatrist and director of psychology and psychiatry at Fred Hutchinson Cancer Center. He frequently counsels breast cancer patients, and he advised Kathy that since her cancer was more complex, she should look for a second opinion on treatment options.
Kathy sought out her second opinion at Fred Hutchinson Cancer Center and met with Dr. Lupe Salazar, now retired. “I fell in love with her immediately,” says Kathy. “She’s a firebrand. She laughs. And I was impressed with the organized process at Fred Hutch. I met with and was examined by everyone, and then they consulted with each other before they came up with a protocol. I decided to stay with them.”
During the lumpectomy, her doctors realized just how extensive her cancer was, involving four sentinel lymph nodes in her left breast. “It’s not surprising because of the way lobular cancers grow,” says Janice Kim, MD, our site lead for breast cancer at Fred Hutch, “They invade the breast stroma using a single cell process and so they are often less ‘dense,’ and leave less trace evidence of their presence compared to invasive ductal breast cancer. These characteristics make them less likely to be palpable or appreciated as a lump by patients and their providers. Conventional breast imaging also underestimates lobular cancer, thus yielding more disease at the time of surgery.”
Kathy’s in-situ diagnosis was changed to infiltrating lobular cancer (ILC), a more complex diagnosis that required more intervention. Kathy decided to get a bilateral mastectomy, but she would still need radiation.Dr. Kim adds: “Despite her aggressive surgery, data has shown that Kathy was at a high risk of a recurrence in the same area in the absence of radiotherapy, and therefore comprehensive radiation was offered.”
Kathy found out about proton therapy through a local breast cancer Facebook group called Knowledge is Power. Being a master researcher Kathy looked into proton therapy as an option. She decided it was the way she wanted to go, because she had cancer in her left breast closer to the heart, she had a long family history of heart disease, and protons reduced the risk of radiation dose to her heart and lungs, which would minimize heart complications later in life.
She consulted with Dr. L. Christine Fang, now retired, in 2019. They bonded immediately, over shoes. “We both wore Rothy’s, flats made from recycled soda bottles,” Kathy says. “Dr. Fang was extremely empathetic and always dressed to the nines!” Dr. Fang laid out Kathy’s proton therapy options with her, but insurance balked at covering it.
“After a thorough discussion regarding her insurance limitations and her desire to pursue proton therapy, Kathy chose to enroll on our national study that compares proton therapy to standard X-ray therapy in breast cancer patients,” says Dr. Kim. “She felt the mitigation of side effects with protons was quite attractive and was pleased when she was randomized to the proton therapy arm of the trial.”
When asked about her proton treatment, Kathy has nothing but positive things to say. “The whole place is so patient-centered. The radiation therapists were a hoot. They made me laugh and played my music. They made me feel like more than a number. Cancer diagnosis is so emotionally fraught and brings thoughts of death to the forefront, but the people and the facility make you feel warm, invited, soothed. I was happy to come early and unwind and stay after to get myself together for the rest of the day.”
Kathy experienced some side effects, including radiation-induced skin irritation, and lymphedema. Four years later, side effects have resolved and Kathy is feeling great.
Kathy encourages patients to sit in the driver’s seat upon diagnosis. It doesn’t mean you have to do a as much research as she did, but it does mean finding people who can help you and engaging with your care team. “Accept the help that’s offered,” advises Kathy, “but don’t just go along for the ride. Talk to people. Ask questions about your treatment and care. Find support groups. Listen to their stories. And if you have left sided breast cancer, for sure, investigate proton therapy.”