When Sandy Cassanelli of Glastonbury, CT was diagnosed with stage IV breast cancer 8 years ago, her first phone call was to the only person she knew how to understand: a close friend who also had breast cancer. metastatic breast.
“She answered all my questions and gave me hope,” says Cassanelli, who is now 47. “She was the only woman I knew who had metastatic disease. If I hadn’t contacted her right away, I would have gone on the internet and read all kinds of statistics predicting that I wouldn’t make it for the next 5 years. But she immediately told me not to do that. She said, ‘don’t consider it a death sentence.’
Cassanelli is now busy raising her two daughters and managing the Breast Friends Fund, a nonprofit charity where 100% of funds raised go directly to metastatic breast cancer research. One of the reasons she thinks she’s survived — and thrived — is all the social support she’s had over the years.
“Over the years, I’ve bonded with so many really amazing women,” she says. “Although sadly I think I lost more friends than I made, their travels also gave me the strength to carry on.”
Global research suggests that people with more social support may have a better quality of life after breast cancer treatment. But it is less clear how social support affects survival. One study looked at over 2,800 women diagnosed with breast cancer. Those who said they felt socially isolated were twice as likely to die from the disease as those who had stronger social networks. One of the reasons is that they may not have benefited from the care of 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 eternal: there is no magic cure and that means a lifetime of tests every 3 to 6 months,” says Jean Sachs, chief executive of the nonprofit organization lucrative Living Beyond Breast Cancer. “Many women resist a community at first because they are so focused on treatment. But they need the social support of others, especially other women who have had similar experiences, so they can become their own effective health advocates.
Connect with the people who get it
Your healthcare team will offer medical advice, and your family and friends will offer care and emotional support. But people with metastatic breast cancer say it’s essential to connect with women who have had a shared experience.
“There’s no better support than support from someone living with the same life-threatening condition as you,” says Tami Bowling, 49, a metastatic breast cancer survivor who lives in Scotch Plains, NJ. “They understand the seriousness of the diagnosis. They feel the heartache you feel about mourning the life you thought you had, but they also share the same desire to make the most of each day. There’s a special bond 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 receive a terminal diagnosis, it stirs up a lot of emotions that you may not be comfortable sharing with family and close friends,” she explains. “It’s liberating to talk to other women who understand. It’s also really helpful to share our stories about the different treatments we’ve tried and our experiences with doctors. Knowledge is power. The more we share with each other with others, the more we feel the confidence to defend ourselves.
Getting that social support early — days or even hours after a diagnosis — is critical, says Abbey Kaler, nurse navigator at the Advanced Breast Cancer Clinic at MD Anderson Cancer Center in Houston, TX. “It’s life-changing knowing you have metastatic breast cancer, so (people) need to be able to understand what it means, not just for themselves, but for their immediate family,” she says. “The presence of social support is essential in order to be able to treat this diagnosis.”
It can also help you create unforgettable memories. Shortly after her diagnosis, Cassanelli recalls walking 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. other women who were also battling the same disease. There were ten of us originally, now we’re down to three. But we’re all keeping in touch,” says Cassanelli.
How to find your breast cancer community
Ask around. Kaler says the first step is to identify a healthcare provider you feel comfortable talking to. “It can be any member of your healthcare team: a doctor, nurse, social worker or nurse navigator,” she says. Then ask them for resources to help you. The cancer center where you are being treated may have an official support group for people with metastatic breast cancer, or they may be able to put you in touch with someone in the area.
You can also contact 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 hosted #LightUpMBC, a global campaign that benefits METAvivor to shine a light on and raise funds for metastatic breast cancer research.
“It was so inspiring to connect with women around the world for the common purpose of educating and raising funds for research,” she says. “There is a fearlessness and a passion among all of us living with metastatic breast cancer, and a recognition that we are all united in the fight for our lives.”
Attend conferences on breast cancer. Most now offer online options where you can join virtually, listen to speakers, and connect with other metastatic breast cancer survivors. Hyman found many members of his tribe this way.
“Living Beyond Breast Cancer has a wonderful online conference that I’ve been attending for the past two years,” she says. “I not only met women from across the country, but I met women who live near me who I would never have met otherwise.” Last year, Hyman met another survivor who lives in her condo complex. “I introduced her to our local metastatic breast cancer support group that she hadn’t yet contacted,” she recalls.
Lean on your family and friends as needed. Even if they are unable to understand exactly what you are going through, they are there to support you.
“My rock throughout this has been my younger sister, Alli, who has accompanied me to every cancer check-up over the years,” says Bowling. “Since we have to go to New York, we make it as pleasant as possible: we have dinner the day before in a good restaurant, we spend the night at a friend’s house, and then the next day we are in the hospital doing blood tests and bone scans.
Pay it forward. Sometimes when you’re dealing with metastatic breast cancer, that’s all you can do to take care of yourself. But during times when you are ready to do so, reach out to others with metastatic breast cancer as well. “One of the most important things you can do to give back is to simply 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.”