The day-to-day realities of navigating advanced breast cancer are challenging enough. No need to add wondering what’s going through others’ heads. But understanding your loved ones’ thought process and where they’re coming from may make it easier to talk about your condition — and get the support you need. Here, we break down some of the most common questions, reactions, and thoughts.
You look too good to have metastatic cancer.
When Natalie Hyman, 46, first began breast cancer treatment, it was obvious from her hair loss that she was going through chemotherapy. But when it returned more than a decade later as metastatic cancer, people were surprised to learn that she was ill. “People were puzzled because my treatment didn’t have any obvious visible signs: I wasn’t bald, I wasn’t throwing up, and I didn’t lose a lot of weight,” says Hyman, who lives in Kailua, HI. “But that doesn’t mean the drugs I was taking weren’t affecting my insides and making me feel lousy. You can look perfectly fine and still be battling metastatic cancer.”
How could this have happened?
In this era of early detection, it may be hard to believe that some women can be diagnosed with such late-stage breast cancer for which there’s no known cure. “There’s this unspoken belief by others that you weren’t vigilant enough, that you didn’t do something right,” says Sally Wolf, a New York City corporate wellness consultant who was diagnosed with metastatic breast cancer in 2017. “But since my mother had breast cancer when I was in high school, I’d been undergoing screening since I was 32. It still happened.”
When will you be OK again?
Your family and friends want you to get better because they love and care about you. But there’s no cure for metastatic breast cancer. “Metastatic breast cancer is a diagnosis that lasts a lifetime,” explains Wolf. “The best news that we can hope for is a scan that shows no evidence of disease.”
Wolf notices this anytime she goes through a treatment for her cancer. “Initially, there’s an outpouring of support where people offer to accompany me for chemotherapy or stop by my apartment,” she says. “But after about 3 months, that stops. Meanwhile, I’m still going to my treatments.”
Part of the problem is what Raleigh, NC, resident Pam Kohl, 71, who was diagnosed with metastatic breast cancer in 2017, dubs as “toxic positivity.” “People don’t want to hear anything negative, and if they do, they dub you a Debbie downer,” says Kohl, who is executive director of Susan G. Komen, North Carolina Triangle to the Coast. “The reality of metastatic breast cancer is that at some point, you stop treatment and just focus on the quality of life you have left. Sometimes, folks don’t want to hear that.”
Why do you seem so upset?
Your friends may notice that you don’t seem like yourself but they aren’t sure what to do. “My temper is shorter at moments,” acknowledges Wolf. “I liken it to death by a thousand paper cuts. Someone does something stupid in the coffee line, and you’re like ‘Oh my God, really?!’” Wolf had a situation recently where she noticed a Starbucks staffer touching pastries with the same gloves she used to touch the register. “Most people wouldn’t think it’s a big deal. But as an immunocompromised person, I do, and it makes me really angry,” she says.
In addition, the day-to-day of metastatic cancer management becomes like a part time job. “I can tell people don’t understand why I’m so overwhelmed sometimes and can’t get through my to-do list,” says Wolf. “It’s because of the time and energy I spend dealing with mindboggling things.” Case in point: Recently, Wolf had a crucial appointment moved by an inexperienced administrative coordinator who didn’t bother checking with her oncologist first. “I managed to fix it, but it suddenly became a 45-minute urgent situation, and it was stressful,” says Wolf. “I spend hours trying to fix things like medical billing errors: things that aren’t my fault but directly affect me. It distracts me from all the other things I am supposed to do.”
Do you want to talk about it?
Not always. “Every time I go to a fundraiser or an event, people come up to me that I don’t know well and ask how I am. But I don’t always want to tell them. I live with stage IV metastatic breast cancer, and I do not always feel great,” says Kohl. “I’m not willing to be inauthentic. But people don’t want to hear the realities a lot of the time, especially when they are somewhere that encourages light chitchat.”
There’s a time and a place to talk about everything, including metastatic breast cancer, says Kohl. But sometimes, it’s better to speak about it somewhere other than at a schmoozy lunch.
I have no idea what you are going through.
When someone is diagnosed with metastatic breast cancer, it’s life-altering. Even those close to you may have no clue what to say. “It’s hard to have a frame of reference if you have never experienced it,” says Jean Sachs, chief executive officer of Living Beyond Breast Cancer.
It’s up to you whether you want to bring your cancer up. You may find it exhausting to tell people about your illness repeatedly. But if it’s someone you’re very close to, realize that they may not always know what to say or may say the wrong thing. Just remember that they do care and want to be there for you in any way that they can.
It’s OK to let them know you’ll reach out to them when you want to talk about it. It’s also OK to be clear that you don’t need to hear false optimism or how important it is to stay positive. “When they do that, they discount our very real fears, concerns, and feelings,” says Kohl.
