15 Breast Cancer Survivors Share What Surprised Them Most About Having Cancer
@Charlotte Hilton Andersen & @ALISON GOLDMAN
Maybe you’ve had someone in your life who went through breast cancer. Maybe you’ve seen characters go through breast cancer treatment on TV shows, from Samantha on Sex and the City to Xiomara on Jane the Virgin. Maybe you’ve had it yourself. About one in eight U.S. women will develop the disease over the course of their lifetime.
But there’s so much that a person may not really understand about the disease—despite reading everything available on medical websites and hearing from doctors—about what it’s actually like to navigate life with breast cancer. Actually receiving that diagnosis and undergoing treatment shines a big spotlight on never-considered questions, never-received answers, and never-imagined experiences. Unless you’re a breast cancer survivor yourself, there are nuances of the illness that you simply can’t prepare for.
Whether you’re going through breast cancer firsthand, or you know and love someone who is, the more you know about it, the better you can show up for yourself or another individual who could use support. So WH spoke with a group of women who have faced breast cancer head on about the parts of their journey they didn’t expect—and they told us all about the good, the bad, and the braless.
I never needed to wear a bra again.
“After my breast-cancer diagnosis, I ended up needing to have both breasts removed and implants put in. My biggest and best surprise was never needing to wear a bra again. I have to admit I rub it in a little when my girlfriends complain about underwire and poorly-fitting bras.” —Mary S., Lodi, California
“Cancer diagnosis is not straightforward, and doctors won’t always assume that’s what it is. This is why it’s so important to get a second opinion! Stage 0 cancer is still cancer. Be proactive in your exams and health, don’t wait to get something checked out. Green liquid is not supposed to leak from your nipple, as I learned the hard way.” —Megan H., Ridgecrest, California
Doctors can be in denial, too.
“As hard as it was for me to hear that I had breast cancer, it was also really hard for my doctor to say it. It devastates doctors to tell young people (because let’s not forget that breast cancer is not just a women’s disease) that it’s cancer because, like you, they had desperately hoped it wasn’t.” —Megan H.
Chemo can mess with your body in weird ways, like making you crave junk food.
“Before breast cancer I had no idea how many different kinds of chemo are out there. It’s not like how you see in the movies where they are puking, losing weight, and all their hair falls out. In fact, some types of chemo do not cause nausea. So many people, including me, gained weight during chemo—mainly because the only taste buds that are left are for sweets, plus they administer steroids that stimulate the appetite. I hated how much I craved junk food when that is completely the opposite of my normal eating habits and tastes.” —Garian V., Boulder, Colorado
Learn how to do a breast self-exam:
Everybody has a breast cancer story to tell you—and that’s not always a good thing.
“When I was first diagnosed, I was surprised at how many people had an experience with a friend, sister, mom, or co-worker having cancer. Unfortunately, they always wanted to tell me things like ‘She had Stage 1 and died!’ or ‘She only had six months to live but she’s still hanging in there a year later!’
Every cancer, like every person, is different—and having your cancer compared to someone else’s sucks. Hearing how someone had a 99 percent chance of survival and didn’t make it is not what we want to hear right now. Hearing how someone is a 10-year survivor after a terminal diagnosis, while uplifting and inspirational to you, usually is just depressing to someone who’s been told they have six months to live.” —Jen E., Suffolk, Virginia
People will want to rub your head.
“It was a bit shocking to me how many people thought it was okay to just touch my bald head or ask to see my head if I was wearing a hat. I’d known that getting touched randomly in public is a thing that pregnant women have to deal with often, but I didn’t know it extended to cancer patients. It still surprises me that people think it’s okay to touch anyone without their permission, for any reason!” —Garian V.
Cancer treatments may kill the cancer, but they can cause other health problems for decades.
“I [was] diagnosed with high-grade ductal-carcinoma in situ (DCIS) [a type of breast cancer]. The surgery [didn’t] frighten me as much as the radiation afterwards and the potential for damage to my heart and lung. Heart damage from radiation doesn’t show up for 15 to 20 years, by which time it’s really too late to do anything. I am tired of cancer. 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 move on!” —Nicholle C., Edmonton, Alberta, Canada
Once you’re a patient, the only statistics that matter are your own.
“When I got the breast-cancer diagnosis, I learned as much as I could in a short amount of time about what I wanted for surgery and reconstruction. I thought that the more I learned, the better off I would be, but I quickly learned that research results are simply statistics, not an individual guarantee. For instance, they say only 3 to 5 percent of reconstructions wind up with an infection. Well, when I wound up with an infection after my implants were put in, that ‘small’ chance became 100 percent for me.” —Kelly F., Arvada, Colorado
Losing your breasts hurts in ways beyond the physical.
“The second time I got breast cancer the treatment was easier in that I didn’t have to do chemo or radiation, but I had to have both my breasts removed, which ended up being really hard. Not only was it physically painful, but I was surprised to find I was so sad over their loss. It made me feel like less of a woman in ways.” —Rose J., Apple Valley, Minnesota
Cancer can be a gift.
“For me, breast cancer was truly a gift. Now I treasure life, I live to the fullest and don’t sweat the small stuff. I now understand what is really important.” —Rose J.
Everyone is suddenly an expert on cancer.
“I was amazed at how many people had ideas about treatments, diets, supplements or other things I ‘should’ be doing. Any suggestions about what to eat, drink, or do during cancer should be off limits. It’s hard enough getting through chemotherapy without having to feel like everyone has an opinion about howyou are getting through it.” —Mary S.
Don’t discount prayers.
“Having the support of friends and loved ones, online or in person, was so helpful to me during my treatment. I learned that ‘I’m praying for you’ or ‘I’m sending positive vibes your way’ aren’t just things people say. I had no idea before how powerful prayers and positive thinking can really be.” —Kelly F.
It’s not a death sentence.
“Shortly after being diagnosed with breast cancer, I remember a lady telling me she was a 17-year survivor. I hung on to that thought through my treatments and it gave me such comfort. I like to share the same with other people going through the same thing now because I know how much it meant to me.” —Darlene M., Valencia, California
You let go of a lot of inhibitions.
“I never was much for swearing, but I started cussing a lot after I was diagnosed. I needed a way to express everything I was feeling. I had no idea I could be so creative with my swears!” —Mary S.
Sometimes cancer patients don’t want to talk about their cancer.
“I don’t know if this was a surprise to me, but it sure seemed to surprise other people. They always wanted to know my whole story, and sometimes I just didn’t want to talk about breast cancer. I would have loved to be given the opportunity to talk about my job or my new nephew or the mold I found in my shower…just about anything but cancer.” —Mary S.
The reconstruction process sucks.
“I always had this idea in my head that the silver living was a boob job, and it couldn’t have been further from the truth. Reconstruction is literally a science project on your chest with implants, and for some body fat or skin moved from other places on your body.
After four surgeries, I am taking a break from the reconstruction process to live my life. I had to come to terms with the fact that my body will never look like it did pre-cancer. While I am okay with that now, it can take a toll on you emotionally and physically. I wish more women were informed of the realities of reconstruction before starting the process.” —Anna C., Cary, North Carolina
It impacts you a lot after treatment has ended.
“What surprised me the most about cancer: being totally able to hold it together and handle everything during surgery and treatment, and then after I was finished, being triggered and emotional. It makes sense and it’s how all trauma is processed, but people don’t realize that ‘being strong’ during treatment is a survival mechanism. We still need support afterward, people!” —Suzanne D., Columbia, South Carolina
Everyone *else* needs to hear that you’re all good.
“I did realize that it would forever change me (obviously: they removed my breasts at the age of 31), but when the treatment is finished and the surgeries are over, I couldn’t just forget it. It dug into my brain in such a heavy way that I had a lot of work to do on my mental health.
The surprising part was how uncomfortable that makes other people. People desperately need you to be okay. They really want to hear it’s all gone and everything is fine. That was tough. I often have to think through how I want to handle that.” —Kate P., Raleigh, NC
You can get it really young with no family history.
“My sister and I were both diagnosed at young ages, her at 39 and me at 42. Surprising because we have absolutely no family history and no genes that we know of.” —Stephanie J., Louisville, Kentucky
You feel so…lost.
“I had never felt so lost and so isolated. There are things in my life that had to be put on pause. I changed the course of what I planned for my future, and it was difficult having a connection to other people my age (who don’t have cancer).” –Rach D., Chicago
People will ask you how you got it.
“Before I was diagnosed, I didn’t know there were different kinds of breast cancer and that some didn’t have targeted therapies. I also had no idea that if you have triple negative breast cancer, you can be diagnosed so young.
I was also surprised by how many people would ask me what I did that made me get cancer—I felt blamed for getting it. I was 41, had never smoked, never had a drink, wasn’t overweight, had been a vegetarian since I was 17, and had run eight marathons. And I still got breast cancer. People don’t understand that women aren’t bringing it on themselves.” –Liz D., Los Angeles
We still don’t have a lot of info on breast cancer.
“I was shocked at the lack of information my cancer doctors could give me about how I got it in the first place, or how to prevent it from coming back. So I turned to natural and integrative medicine for the most part, which was much more informative, and I’m excited to be celebrating my 10-year Cancerversary this year!” –Danielle M., Bergen County, New Jersey
