Having breast cancer is one of those experiences that’s impossible to understand unless you’ve walked through it step by terrible step. Talking about the bizarre, awful reality of having this illness with people who haven’t been there can be hard—but those who have been in your shoes can offer some real comfort and wisdom. Here, in the hopes of making things easier for others, women who have had breast cancer share what they wish someone had told them.
1. You’ll probably want to bring someone you trust to important doctor’s appointments.
It’s not uncommon to walk out of an overwhelming or emotional doctor’s appointment with basically no memory of what you talked about, says Peggie D. Sherry, 62, who’s had estrogen-positive ductal carcinoma in situ breast cancer twice. “You will walk out of there and you won’t remember what [the doctor] said, and you won’t understand what’s going on,” she tells SELF. This can be particularly rough at the start when you’re dealing with a flood of new and scary information. If you can, Sherry recommends taking someone you trust with you so they can keep a record of the discussion and offer moral support.
Another tip: Any time a medical question pops into your mind, write it down even if you don’t have a doctor’s appointment soon. That way, you won’t be scrambling right before an appointment to make sure you remember all the questions you need to ask. Plus, having the questions written down in one spot means you won’t forget them if you’re nervous while with the doctor.
2. Be prepared to deal with a lot of insurance nonsense.
In addition to having breast cancer not once but twice, Sherry has been running camps for people with cancer at all stages of the illness since 1999. Clearly, she knows a few things about dealing with this disease. One of her biggest takeaways is that the insurance situation can be a beast.
Having breast cancer means you’re probably going to be spending a lot of time dealing with different medical professionals and institutions, but they won’t necessarily all accept the same insurance plans. “You have to know that every single person that you’re dealing with is also covered,” says Sherry, who wound up with a $ 40,000 bill her insurance wouldn’t pay. (She was eventually able to pay it off herself.)
Wading through a ton of confusing insurance information isn’t ideal when you’re just trying to keep your head above water after a breast cancer diagnosis. Instead of asking each specialist or institution if they accept your insurance, it might help to call your insurance company to verify the coverage of as many of your care providers as possible. Here’s more information about how to prevent and handle expensive medical bills.
3. Some of your loved ones might disappoint you.
While some of your friends and family will be there for you throughout this experience, others might let you down. “Often, family members and your closest friends walk away,” Sherry says. Sherry recalls the day that her friend came to her in tears, saying “I can’t stand to watch you die” and ending their friendship. “She walked out, and I never saw her again,” Sherry says.
When Kristin M., 25, was diagnosed with stage 1 luminal B breast cancer at only 22, she was shocked and hurt when people she thought would be there for her disappeared. “For a while, it kind of affected me,” she tells SELF. Ultimately, though, “it helps you see who is truly there for you and who is a real friend,” she says.
Even people who try to be supportive can cause more stress. As Sherry points out, “It’s bad enough when people come up and they’re like, ‘How arrrrre you?’ … and you’re constantly reassuring people when you don’t know if you’re gonna die.”
All of this can be upsetting to read, because of course you’d hope that the people closest to you would show up for you in such a difficult time. But, Sherry says, the surprising—and hopeful—thing about having breast cancer is that “total strangers come to your rescue.”
4. Online breast cancer support systems can be great.
Like we said above, sometimes the only people who get it are the ones who have been there themselves. Enter: support groups. If you’re still adjusting to your diagnosis and not ready to go to a support group in real life, online options may help.
Sherry recommends CaringBridge, which she says is “like Facebook for sick people.” You can write updates on how you’re doing and receive messages of support with no pressure to interact directly. (This is great when you don’t have the emotional capacity for yet another outpouring of sympathy that somehow ends with you reassuring the other person.)
Kristin recommends a platform called Humanly, where people with cancer can write or record audio about their experiences to share with each other, knowing that they’re in a safe space where their feelings will be respected and understood.
5. Don’t be afraid to ask all the questions about treatment and surgical options.
If you’re getting a procedure like a lumpectomy (surgery to remove a tumor) or mastectomy (surgery to remove one or both breasts), it can help to ask your doctor about any possible surprises you might deal with afterward.
Nicole M., 48, wishes she’d known that getting a lumpectomy before her mastectomy would leave her with a chest indent. “It wasn’t just that I had no boobs,” Nicole, who was diagnosed with stage 0 ductal carcinoma in situ breast cancer in August 2018, tells SELF. “It was that I was concave and indented on my right side where the lumpectomy had been. It [looked] like a crater.”
Nicole dealt with another surprise when using tissue expanders to prepare for her reconstructive surgery this upcoming August. Tissue expanders are saline-filled pouches left beneath the skin post-mastectomy to create room for implants, and Nicole realized that really hot showers made the metal in the expanders uncomfortably hot, too.
Bottom line here: While there are some parts of recovery from breast cancer surgery that it’ll be hard to anticipate, asking your doctors detailed questions about the process—and reading articles like this one—may help.
6. Chemotherapy isn’t always as awful as it seems.
Some people have really grueling chemotherapy experiences, but others don’t. It really depends. But since most people only hear terrible chemo stories, it can lead to a fear of this treatment.
“When I first heard my doctor say ‘chemotherapy,’ I vividly remember picturing myself hugging a toilet and vomiting profusely, as I had seen in movies or television,” Crystal Brown-Tatum, 47, who was diagnosed with breast cancer at 35 and has been in remission for 12 years, tells SELF. “I had never known anyone personally that had gone through chemo treatment,” says Brown-Tatum, who wrote about her experience as an African-American cancer patient in her book, Saltwater Taffy and Red High Heels: My Journey through Breast Cancer.
This impression actually led her to delay treatment, even though she had stage 3A triple negative breast cancer, a very aggressive form of the disease. But once she started chemo, Brown-Tatum found that the nausea medication she’d been given worked well, and the only time she was violently ill was after her first session.
Allison C., 28, was diagnosed with invasive ductal carcinoma after finding a lump when she was 27. She also had a chemo experience that was more nuanced than she expected. “Days three through five [after chemo were] horribly bad,” she tells SELF. “But after that, I was able to go to the gym, travel—I did a lot of stuff actually!”
To get herself through those bad days, Allison kept a journal recording the medication she was on and how she felt. That way, the next time around, she could remind herself that she’d be feeling better by day six.
7. Find small ways to make treatment more bearable.
As part of her camps, Sherry helps people set up vision boards to keep them focused on their post-cancer goals. Creating tangible reminders of what you’re looking forward to or even of things that give your life meaning might help you push through emotionally.
Or you can create little rituals or treats that anchor you to a life beyond hospital appointments and medical procedures. Sari K., 44, who was diagnosed with stage 2 breast cancer three years ago, says that she always wears red Chanel lipstick to the hospital, takes work to do in the waiting room, and makes fun plans like getting a massage afterward.
8. Try to be your own best advocate.
That “try” part is important. It’s really easy to just say, “Oh, advocate for yourself in one of the hardest and most confusing times of your life!” when it can be really difficult to do so in practice. Still, it’s important to speak up for yourself when you can.
When you’re going through medical treatment for a long period of time, it’s easy to feel like you’re losing control—not just to the disease, but sometimes to the very people who are trying to help. A doctor’s job is to do everything they can to save your life, but sometimes, that can come at the expense of taking your feelings into account.
Striking a balance between listening to your doctors and following your own instincts is tricky, but there are some instances where you might have to put your foot down. Sari knows this pretty intimately.
“Every single doctor has told me, just go into menopause, you don’t need your hormones, you’re going through this, you don’t need your breasts, you don’t need anything,” Sari tells SELF. This has inadvertently made her feel like doctors are trying to strip away her womanhood, she says. “I’ve had to really learn to assert myself and my priorities to my doctors and get them to hear what I need from my point of view.”
Then there’s Allison, who decided against getting reconstructive surgery after her unilateral (single breast) mastectomy because she worried it would affect her ability to rock climb. Many doctors pushed back, she says, but she was steadfast.
“I had a lot of surgeons who thought they knew what I wanted, and I had to search around until I found this surgeon I actually went with, who’s a rock climber as well,” Allison says. “She understood what I wanted, and she did a phenomenal job!”
Doctors can advise you, but it’s your body, and you should be able to decide how it’s treated. If your doctor won’t listen and you have the resources, try to find one who will.
9. Focusing on non-cancer parts of your life might help get you through.
For example, while in treatment, Kristin got her master’s degree in forensic psychology. Allison not only got married, moved, and finished the last two months of her master’s while getting treated for breast cancer, she kept rock climbing— even setting personal records—and also started her own company selling journals to help other cancer patients record their experiences.
Ultimately, Kristin says, it helped her to believe she would survive and live to do other things. Now that she’s cancer-free, she’s making good on that promise to herself. “I call it my new chapter,” she says. “The bad one has closed, and now the new beginning is happening.”