Doctors and patients are trying to transform metastatic breast cancer from what used to be a death sentence to a chronic condition - and Shirley Mertz is living proof.
While average life expectancy for breast cancer that spreads to other parts of the body used to be only a couple of years, that statistic is outdated because it's based on treatments from 5 years ago or more.
In contrast, Mertz went 12 years cancer-free after her initial diagnosis, and now has gone five more years since it spread - and is once again cancer-free.
To help others share her success, Mertz, a former principal of Fremd High School in Palatine, is celebrating another victory. She recently got the state of Illinois to declare Oct. 13 Metastatic Breast Cancer Awareness Day.
Every October, National Breast Cancer Awareness Month alerts people to new treatments, information and support groups. Mertz hopes her annual day will do the same for metastatic breast cancer patients in particular, who need to find life-extending treatments until there is a cure.
"My dream is one day women can be told they can live with this as a chronic disease, just as people with diabetes or HIV/AIDS can live for decades," Mertz said. "We need clinical trials to help us fight metastatic disease."
Mertz, now a 62-year-old Inverness resident, was first diagnosed with breast cancer in 1991. It was only in one breast, but Mertz opted to attack it aggressively, having a double mastectomy to try to wipe out any chance of it spreading.
"I really thought I had beat the disease," she said.
One in three breast cancer patients has a recurrence. For most survivors, the goal is to reach the five-year mark without the disease reappearing, because it isn't likely to return after that.
Mertz went 12 years cancer-free until 2003, when a checkup found malignancies in her spine and liver.
"I was devastated," Mertz said. "But I am a tough person. I've had a lifetime of obstacles to overcome, and that steeled me for this experience."
After her first oncologist gave her what she believes was the wrong treatment, she found Dr. Funmi Olopade at the University of Chicago Medical Center. Olopade is a MacArthur Foundation "Genius Grant" recipient who specializes in metastatic breast cancer.
Lab reports showed that Mertz had an aggressive form of cancer involving a gene known as HER2. Targeting that characteristic, Mertz's doctor prescribed herceptin with chemotherapy.
The treatment shrunk the tumors until they disappeared.
Dr. Olopade has helped lead the trend toward customizing treatment based on the characteristics of each patient's cancer.
"We now know that breast cancer is not one disease and one size does not fit all," Olopade said. "Doctors must understand this premise so they can give the treatment that is tailored to that individual patient."
Using a customized approach, it's increasingly common for women with metastatic breast cancer to get treatment, then watch as their tumors shrink to the point they can't be found on body scans. The cancer may return, but it can be treated again with other drugs, according to Kay Wissman of the Breast Cancer Network of Strength (formerly Y-Me).
"Women with metastatic breast cancer are living a lot longer than they used to," Wissman said. "It's a scary diagnosis, but it's not necessarily a death sentence."
She knows women living 10 years with metastatic breast cancer, and some who went 19 years before finding the cancer had spread, adding, "It's always in the back of your mind."
While eight states and 28 cities established the first Metastatic Breast Cancer Awareness Day this year, Mertz's ultimate goal is to get Congress to establish a national day.
As Midwest coordinator for the Metastatic Breast Cancer Network, she has met with health liaisons from Illinois Senators Barack Obama and Dick Durbin, as well as several other politicians.
As a former school administrator who now teaches part-time, Mertz believes the best weapon against cancer is knowledge.
"I really believe in the power of education to transform lives," she said.
• The Breast Cancer Network of Strength will host a Life in Balance Breast Cancer Survivorship Forum Nov. 6-8 at the Chicago Hilton & Towers. For information, see networkofstrength.org or call (312) 986-8338.