Metastatic breast cancer - 'it's like getting all four tires flattened'
Sept. 17--Lori Sumako was your perfect, stage 1 breast cancer patient.
She followed all of her doctor's orders. She endured the surgery and chemotherapy without (too many) complaints. She and husband Rick Mitchell gave thanks for each year that she was cancer-free.
Five years later, Sumako, a labor and delivery nurse, was told she was cured. A year after that, she started to believe it.
After all that good news, Sumako was doing some housework one morning when she felt a pain in her midsection. In the next week, she learned her breast cancer had spread, or metastasized, to her liver.
It was a rude introduction to a new world, one inhabited by roughly 155,000 American women and men. At present, there is no cure for metastatic breast disease, and the best outcome is a long remission.
Says Mitchell, "We're hoping this becomes like diabetes or multiple sclerosis, chronic but treatable. But we're not there yet."
Shirley Mertz, president of the Metastatic Breast Cancer Network, compares the disease to AIDS in the 1980s, when the diagnosis was essentially a death sentence. Today, she points out, AIDS patients can manage their disease and live long lives.
With metastatic breast cancer, the median survival rate is only two to three years, Mertz said. "Nearly 40,000 women and men die every year, and that number hasn't changed in two decades."
Part of the problem, Mertz said, is that only 5 percent to 8 percent of total funding for breast cancer research goes to metastatic disease.
"We need cures for breast cancer -- that is the message," Mertz said. "A lot of women today think, 'Well, if I get breast cancer it will be just a bump in road. I'll get treatment, it will be ugly, then I'll celebrate as a survivor.' But, for a person with metastatic disease, it's like getting all four tires flattened. She'll never be out of treatment."
Sumako, Mitchell and Mertz would like to see more attention paid to helping those with late-stage cancer.
For now, they're doing what they can, which includes helping with the seventh annual Metastatic Breast Cancer Conference in Houston Friday-Sunday.
Mertz, who lives in the Chicago area, says the conference is designed to inform patients, and the speakers will be experts from the University of Texas M.D. Anderson Cancer Center.
"They won't dumb it down," Mertz said.
Also, there will be time for the conference attendees to get to know one another.
"We're all fighting this incurable but treatable disease," Mertz said. "It's truly amazing to develop relationships and realize we're not alone."
Mertz, who describes herself as an outlier, has successfully fought her metastatic cancer for 10 years. Sumako hopes she'll be able to celebrate that milestone, too.
A new course
Sumako received her second cancer diagnosis in October 2007, when her doctor suggested she simply enjoy what time she had left. Instead, she decided to find a new oncologist.
She and Mitchell wandered into a breast cancer conference a few days later, and Sumako spotted a man wearing a suit and a stethoscope. Yes, he was an oncologist, and he told her exactly what she needed to hear.
"I don't believe in palliative care," Dr. Khaled Jabboury said to her. "The goal is complete remission."
As Sumako and Jabboury talked, Mitchell interviewed radiation oncologist Dr. Karl King. The two physicians became the leaders of Sumako's cancer-fighting team.
First came chemotherapy, a cocktail of six drugs. One had to be discontinued because of painful side effects. But the others worked so well that her small tumors disappeared. That left one, which was blasted into nothingness by radio-frequency ablation. Then came four months of radiation.
For the past five years, Sumako has had regular intravenous treatments of Herceptin, a drug that has stopped her cancer from reproducing.
"Targeted therapies have revolutionized the treatment of certain types of metastatic breast cancer," she said.
A few years ago, Sumako was skiing Mount Hood with her daughter, Chelsea, when she whipped out her cellphone, dialed Jabboury's number and asked the office staff, "Can you tell him, 'Thank you so much'??"
Sumako and Mitchell don't really want to talk about the tears they've shed. Instead, they are funny, rueful, admiring of each other despite the uncertainty that comes with her diagnosis.
Mitchell, a writer and arts consultant, is proud that Sumako worked, with only occasional breaks, through her illness. It was important -- her employer, the Woman's Hospital of Texas, provides the family's health insurance.
Sumako is grateful that Mitchell has handled all the bills, taken her to countless appointments and ignored the things she said when she was feeling her worst.
"Sometimes I wake up with hot tears -- I want my future back. I want that little cabin at the foot of Mount Hood. I want to make plans," Sumako said. "As time goes on, I start thinking, maybe I can."
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