What Women With Metastatic Breast Cancer Want You To Know
(Photo: iStock)
It almost always begins with a lump.
The one that turned the life of Annick Gervais, 48, upside down was barely bigger than a dime. Karima Jessani, 59, knew she should talk to her doctor about the one she found, but put it off. Marie-Geneviève Keddy, 44, might not have detected hers if her partner hadn’t noticed it.
Karima was diagnosed with metastatic breast cancer (mBC)—also known as Stage 4, the most advanced stage of cancer—in 2013. Annick and Marie-Geneviève both received the same hard news in 2019.
Metastatic means that cancerous cells have spread to areas of the body—like the lungs, bones or brain—other than where they first formed. Breast cancer is life-changing at any stage, but with early detection, chances of improvement in the management, prognosis of the disease and quality of life are usually increased. There is no cure for mBC. Around 5 to 10 percent of newly diagnosed breast cancers are metastatic, and about 15 Canadian women die of the disease every day.
Support for cancer patients often leans into you’ll-beat-this warrior clichés. But what does one say if the battle is not winnable? It’s an uncomfortable topic most people shy away from, which leads to mBC patients feeling isolated, misunderstood and unsupported. That’s why it's important to give patients like Annick, Karima and Marie-Geneviève a voice to share their experiences, educate and drive further awareness and support.
mBC does not have an age
Annick first noticed a mass in 2018. Her mother, who had died of breast cancer 17 years earlier, had a lump in the same spot. But doctors dismissed Annick’s concerns since she was young (43 then) and her most recent mammogram looked normal. It took almost a year before she was finally able to see a specialist that ran all the necessary tests.
“Could things have been different if I had been taken seriously? Maybe. Of course, I wonder,” says the mother of two. “I'm not angry about it. I just wish patients were listened to,” she continues. “You have to trust your gut. If you're worried, be relentless.”
Statistics don’t equal prognosis
Only about 30 percent of women with mBC survive the five years after diagnosis, but Karima has learned to ignore the statistics. “It was dismal; I thought I had six months to live,” says the mother of three, who’s been living with the disease for almost a decade. “Now I know that everyone’s different. You may be the outlier. I’m one of them.”
“When I was first diagnosed with cancer, I thought, ‘Please, God, let me see my son graduate from elementary school,'” she says. “I’m constantly renegotiating with God.” Her son’s now in university, and she’s looking forward to meeting her first grandchild in June.
mBC can be invisible
All three women live with symptoms and side effects people can’t always see, like debilitating back pain and crushing fatigue, so it’s best not to assume what late-stage breast cancer looks like. “People say I don’t look sick or that I’m too young to have cancer,” says Marie-Geneviève. In fact, the most supportive thing friends can do is just listen and ask questions without any assumptions at all.
Treatment is not a cure
Well-meaning family members ask Marie-Geneviève if she’s done with her treatment, confusing therapies to enhance quality of life with therapies to rid her body of cancer. “No, I’m not done with my treatment. I’ll never be done with my treatment. I’m stuck with it,” says Marie-Geneviève. “People have good intentions,” she adds. “They don’t do it on purpose, they just don’t know much about cancer.”
Support is everything
Karima, Annick and Marie-Geneviève would like patients who receive this diagnosis to know that help is out there. A wealth of information on a variety of topics—like treatment, financial assistance, and how to talk to loved ones—can be found at mbctime.ca. Karima strongly urges new patients to find a support group as well. “Try to build a network,” she says. “I had a whole stack of informational booklets, but nothing replaces talking to someone who has gone through the same thing as you.”
There are mBC breakthroughs, but more research is needed
All three women are realists, but they’re also hopeful, thanks to medical breakthroughs over the past decade. “It’s important for patients to know that the landscape for mBC has changed, and that there are treatments out there that can help improve outcomes for patients living with the disease,” says Dr. Mita Manna, medical oncologist at the Saskatoon Cancer Centre and the Provincial Disease Site Chair Lead for Breast Malignancies. Examples include targeted drug therapy that can be taken orally at home, precision medicine that allows treatment to be tailored to individual patients, immunotherapy and improvements in imaging technology like MRIs and CT scans, which allow for earlier detection.
But recognition and research go hand in hand, so it’s crucial to make sure mBC is part of the breast cancer narrative. Says Dr. Manna: “Things have really come a long way, but I think it’s essential to have those conversations and bring awareness to the community.”
