A Metastatic Breast Cancer Journey Can Be Very Lonely

Breast cancer can be scary and life altering at any stage, but those with metastatic disease, which has spread to areas beyond the breast and nearby lymph nodes, live a unique experience. Their perspective and decisions are shaped by the knowledge that their illness is incurable and that they’ll need treatment for the rest of their lives.

Patients facing this diagnosis often say that only others in the same situation can truly understand what they’re going through. CURE® talked with five people living with the disease, all ambassadors for Facing MBC Together, an Athenex Oncology program that includes a website and app designed to provide practical and emotional support. Here, we share an excerpt from Susan Swanson’s journey with metastatic breast cancer.

Susan Swanson’s diagnosis of stage 1 breast cancer in 2012 came at a particularly inopportune time. “My mom had died three weeks earlier and we had sold our house three days prior,” recalls the 56-year-old Sea Girt, New Jersey, resident, who received a diagnosis of metastatic breast cancer in 2014. “My twins were graduating from high school and my oldest from college. We were packing, and my husband was going back and forth trying to get our kids through school while I was trying to figure out what had happened to me and where I was going to be treated. It was a very challenging time.”

On self-advocating

“You don’t know what questions to ask because you don’t even know what the words mean, so you have to get up to speed quickly. I read and talked to anybody I could. I met a woman from a pharmaceutical company through a friend of a friend, and she ended up being this amazing source of information, so I tell people they have to connect and network.”

On handling the emotions that come with cancer

“I don’t see my therapist much anymore, but at the time, he got me out of my funk. When we moved, I lost my support network. I used to say to my husband, ‘If I died today and you weren’t here, no one would even know I was in the house.’ What has really saved me is walking. I probably walk five to seven miles a day, and it’s what keeps me sane. It has helped my side effects, and mentally, it keeps me in a good place.”

On advice for other patients

“People need to have a good network around them if they possibly can, and sometimes that means losing friends. Some people can’t handle it, and that’s OK. If you don’t have support, you’ve got to find it on social media. I always reach out to Living Beyond Breast Cancer because they’re a trusted source and always seem to have the information I need. You can’t think you’re going to walk this walk alone. It’s a very lonely walk.”

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