Building a Breast Cancer Community
When Sandy Cassanelli of Glastonbury, CT, was diagnosed with stage IV breast cancer 8 years ago, her first phone call was to the one person she knew would understand: a close friend who also had metastatic breast cancer.
“She answered all of my questions and gave me hope,” says Cassanelli, who’s now 47. “She was the only woman I knew who had metastatic disease. If I hadn’t reached out to her right away, I would have gone onto the internet and read all sorts of statistics predicting I wouldn’t make it through the next 5 years. But she told me right away not to do that. She said, ‘don’t view it as a death sentence.’”
Cassanelli is busy today raising her two daughters and running the Breast Friends Fund, a nonprofit charity where 100% of funds raised go directly to metastatic breast cancer research. One reason why she thinks she’s survived — and thrived — is all the social support she’s had over the years.
“I’ve made so many connections over the years with truly amazing women,” she says. “While sadly, I think I’ve lost more friends than I’ve made, their journeys have also given me strength to carry on.”
Overall research suggests that those with more social support may have better quality of life after breast cancer treatment. But it’s less clear how social support affects survival. One study looked at more than 2,800 women diagnosed with breast cancer. Those who reported that they felt socially isolated were twice as likely to die from the disease as those with stronger social networks. One reason is because they may not have had the benefit of caregiving from friends, relatives, and even children. But experts also say that connecting with others is an important form of self-care.
“A diagnosis of metastatic breast cancer is forever: there’s no magic cure and it means a lifetime of scans every 3 to 6 months,” says Jean Sachs, chief executive officer of the nonprofit organization Living Beyond Breast Cancer. “Many women resist a community at the beginning because they are so focused on treatment. But they need the social support of others, particularly other women who have gone through similar experiences, so that they can become their own effective health advocates.”
Connecting With People Who Get It
Your health care team will offer medical advice, and your family and friends will offer caretaking and emotional support. But people with metastatic breast cancer say that connecting with women who have had a shared experience is key.
“There is no better support than the support of someone living with the same life-threatening illness that you live with,” says Tami Bowling, 49, a metastatic breast cancer survivor who lives in Scotch Plains, NJ. “They understand the severity of the diagnosis. They get the heartache you feel about mourning the life that you thought you would have, but they also share the same desire to make the most of every day. There’s a special connection there that you won’t find with anyone else.”
Natalie Hyman, 46, a metastatic breast cancer survivor who lives in Kailua, HI, agrees. “When you are given a terminal diagnosis, it brings up a lot of emotions that you may not be comfortable sharing with close family and friends,” she explains. “It feels liberating to speak to other women who understand. It’s also very helpful to share our stories about the different treatments we’ve tried, and our experiences with physicians. Knowledge is power. The more we share with each other, the more we feel the confidence to advocate for ourselves.”
Getting this social support early — within days or even hours of a diagnosis — is critical, says Abbey Kaler, a nurse navigator at the Advanced Breast Cancer Clinic at MD Anderson Cancer Center in Houston, TX. “It’s life changing to know you have metastatic breast cancer, so (people) need to be able to understand what that means, not just for themselves, but for their immediate family,” she says. “The presence of social support is pivotal in terms of being able to process this diagnosis.”
It may also help you make life-lasting memories. Soon after her diagnosis, Cassanelli remembers participating in a fashion show with others to raise money for breast cancer research.
“The first time I met (them) was the day before the fashion show. We spent the next 48 hours together, and really bonded. It felt so empowering walking down the runway with other women who were also fighting the same disease. There were ten of us originally, and now we are down to three. But we all keep in touch,” says Cassanelli.
How to Find Your Breast Cancer Community
Ask around. Kaler says the first step is identifying a medical provider you feel comfortable talking to. “It can be anyone on your health care team: a doctor, a nurse, a social worker, or a nurse navigator,” she says. Then ask them for resources to help. The cancer center where you are being treated may have a formal support group for those with metastatic breast cancer, or they may be able to connect you with someone in the area.
You can also reach out to organizations such as the American Cancer Society, Living Beyond Breast Cancer, CancerCare, or METAvivor. Many of these groups also have social media pages on platforms such as Facebook or Instagram where you can connect with others. In October 2022, Bowling herself organized #LightUpMBC, a global campaign that benefits METAvivor to shine a light and raise funds for metastatic breast cancer research.
“It was so inspiring to connect with women around the world with the common goal to educate and raise funds for research,” she says. “There’s a fearlessness and a passion among all of us who live with metastatic breast cancer, and a recognition that we are all united in fighting for our lives.”
Attend breast cancer conferences. Most now offer online options where you can join virtually, listen to speakers, and connect with other metastatic breast cancer survivors. Hyman has found many members of her tribe this way.
“Living Beyond Breast Cancer has a wonderful online conference that I’ve attended the last couple of years,” she says. “I’ve not only met women from all over the country, but I’ve met women who live near me that I’d never have crossed paths with otherwise.” Last year, Hyman connected with another survivor who happens to live in her condo complex. “I introduced her to our local metastatic breast cancer support group that she hadn’t yet connected with,” she recalls.
Lean on family and friends as needed. Even though they may not be able to understand exactly what you’re going through, they are there to support you.
“My rock throughout this has been my younger sister, Alli, who has come with me to every single cancer scan over the years,” says Bowling. “Since we have to go into New York City, we make it as pleasant as we can: we have dinner the night before at a nice restaurant, stay the night at a friend’s apartment, and then the whole next day we’re at the hospital doing blood work and bone scans.”
Pay it forward. Sometimes, when you are grappling with metastatic breast cancer, it’s all you can do to take care of yourself. But during those times that you’re up for it, reach out to other people with metastatic breast cancer, too. “One of the most important things you can do to give back is simply to share your story with others,” says Bowling. “It’s cathartic for you, and it gives other women hope and also the realization that they’re not alone.”