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Chemo won’t necessarily make your hair fall out? Underwire bras don’t cause breast cancer? Breast cancer is actually many different diseases, not just one? Breast cancer isn’t actually the leading cancer killer of women? All of these, surprisingly, are true—not that you’d necessarily know it from what you see, read, and hear from others. (Lung cancer is the number-one cause of cancer deaths in women, according to the American Cancer Society, in case you were curious.)
All of this is to say, breast cancer is one of the most common and publicized cancers, yet the disease still harbors many misconceptions and surprises for patients and their loved ones. So we asked breast cancer patients and survivors to share what most shocked them about their diagnosis, treatment, and recovery.
There’s something about hearing that a loved one has breast cancer that brings out the helping spirit in most people—which is great ... unless they offer up unsolicited medical advice. “When I was diagnosed, suddenly everyone had opinions about what treatments I should do or not do,” says Mary S., of Lodi, California. “The worst was the people who were sure I could be cured by ‘natural’ means. It was hard to keep a straight face while people suggested things like giving myself coffee enemas and drinking olive oil. I have doctors for a reason, thanks.”
It’s a strange but all-too-human reaction to hearing about another person’s tragedy to try to find a reason why it couldn’t happen to you. Unfortunately trying to figure out why someone got breast cancer (and, in turn, trying to reduce your owm risk for it) isn’t that simple. Those prying questions can be really painful for patients and survivors, says Jill H., of Arcadia, California. “There were people who would tell me that the cancer was from eating too many hamburgers, drinking soda pop, cooking with plastic, and so many other things,” she says. “It just got ridiculous. The truth is we really don’t know why cancer happens and, yes, that’s scary, but blaming the person for their own disease is cruel.”
“Often the first question I would get is, ‘Is it the good kind or the bad kind of cancer?’ I know it's a sincere question because they want to know how bad your situation is, but in our situation it was the ‘bad’ kind and it was always really awful to have someone ask me this question,” Jill says. “Not to mention how awkward it was for both of us when I would answer ‘it’s bad.’” Bottom line: All breast cancer is bad. Don’t make how many months or years someone has left to live the main focus of conversation, unless the patient brings it up.
When Kelly F., of Fort Collins, Colorado, got her breast cancer diagnosis her first stop was the internet to research everything she could find on her particular condition. At first she was heartened by what she found—her type of breast cancer had a high survival rate and lots of options for surgery and reconstructions. But. “I quickly learned that cancer doesn’t follow your plan,” she says. “The stats I found said that only 3-5% of reconstructions wind up with infection. Well not only did I get an infection, but I ended up have another surgery, and got another infection after that! Statistics went out the window at that point.”
“I’d heard so many bad things about chemo that I was so surprised when I didn't get sick from it,” says Rose J., of Minneapolis, Minnesota. There are many different types of chemotherapy these days with new, promising treatments coming out, and all have different types of side effects, according to the American Cancer Society. The biggest problem for Rose was the fatigue. While she did lose her hair, she says that overall the depression from going bald was worse than any other side effects from the chemo. (Here's what breast cancer treatment side effects are really like, according to patients.)
Elizabeth L., of Washington, D.C., was eight months pregnant when she learned she had inflammatory breast cancer. “I thought the breast pain and weird leakage was just from being pregnant so I didn’t worry about it,” she says. “Getting diagnosed with breast cancer rocked my world. I was terrified for the baby and myself.” Thankfully her daughter was born without complications and Elizabeth was able to start chemotherapy right away.
But the experience left her feeling fraught. “It seems like such a little thing but I was devastated that I couldn’t breastfeed her,” she says. After talking to her doctors they were able to work out a chemo schedule where she could still nurse her daughter, providing vital bonding time for mom and babe. “That experience made me want to keep fighting the cancer, so I could continue to be her mom,” she adds.
When Rose’s breast cancer came back a second time her doctors immediately ordered a double mastectomy. It made sense, she wanted to get rid of the source of the cancer, and she wasn’t surprised by the treatment. What did surprise her? “The initial loss of my breasts was heartbreaking to me,” she says. “It surprised me that I was so sad over their loss and felt like and less of a woman, even though I knew that wasn’t true.”
Breast cancer is the second-most common cancer in women (after skin cancer), so it stands to reason that you’d be in good company. Yet you may not realize just how many women in your life—or, say, friends of friends, or relatives of coworkers—have fought the same disease until you are battling yourself, says Darlene M., of Valencia, California. “I remember an acquaintance telling me she was a 17-year survivor. It gave me such comfort,” she says. “Now I like to share my journey with other women because I know how much it meant to me to hear from other survivors.”
Getting a diagnosis of breast cancer makes you so much more aware of how common the disease really is, and you can empathize with every sufferer, which can be exhausting, Nicholle says. “I am just so tired of cancer,” she says. “In the last two years I have lost both parents and a handful of friends to the disease. Even my cat died of cancer. It's all really depressing and I just want to get through this and put cancer behind me.”
One of the things people don’t often discuss is potential long-term side effects of the various cancer treatments. Understandably, doctors and friends want to focus on getting you cured, but you may eventually have to confront how it affects other aspects of your health . “I've been recently diagnosed with high-grade DCIS [an early-stage breast cancer] and the surgery doesn't frighten me as much as the radiation afterward because of the potential damage to my other organs, especially my heart and lungs,” says Nicholle C., of Edmonton, Canada. “I worry a lot about this because heart damage from radiation may not show up for 15 to 20 years.” Read more about the link between cancer treatment and heart failure here.
“As soon as people heard I had cancer, that was all they wanted to hear about,” Mary says. Sometimes it’s nice to be able to talk about it, she says, but spilling your guts to a stranger? No thanks. “Sometimes, I just didn't want to talk about cancer. I wanted to talk about my job or my new nephew or the mold I found in my shower, literally anything other than my cancer,” she says. Know that it’s totally fine to tell people you’re not up for a discussion at the moment or to give them a generic answer and change the subject, she adds.
“My biggest surprise was never needing to wear a bra again,” Mary says. Thanks to her breast implants and reconstruction, she now has what she calls “perfectly perky” boobs that defy gravity no matter what. “I have to admit that I will totally rub it in when my friends complain about their bras,” she says.
“I truly believe that getting breast cancer twice was a gift,” Rose says. “It’s taught me to treasure life, and to not take anything for granted. Now I live to the fullest and don't worry about the little things because I understand what is really important.”
It’s important to note that not all survivors see their cancer as a positive thing and there is no “right” or “wrong” way to think about your cancer. And your feelings about your cancer may change over time, or even on certain days, by the minute or hour. Your feelings are valid, no matter what they are.