8 Things No One Tells You About Getting a Double Mastectomy

Kim Peiffer
·4 min read

If your doctor’s suggested a double mastectomy to remove or prevent breast cancer, you’ve likely been inundated with scientific information. But there’s non-medical advice to consider, too. Here, eight women who have (or had) breast cancer share what they wish they had known before getting a double mastectomy.

Be Your Own Health Advocate

“I was diagnosed with breast cancer in 2015, and my medical team moved quickly to schedule a double mastectomy. Though the cancer wasn’t showing up in the blood tests that followed, five years later, it had metastasized to my brain, liver, kidneys, lungs, right adrenal gland, and bones. It was now stage IV cancer. If you’re scheduled for a mastectomy, you need to insist on PET or CAT scans as part of your long-term care plan. —Patricia Yelpo

Don’t Rush the Healing Process

“Take the time to heal physically and emotionally. When I scheduled a double mastectomy with multiple reconstructions, the surgical oncologist said I should expect a yearlong recovery process. But I got infections and it ended up being closer to two years. I was stressed and scared for those years, and I think that impeded the healing process. I also tried to get back to my “normal” routine quickly, and I think that was a huge reason I wasn’t healing properly.” —Katy Bell

Post-Surgery Physical Therapy Is Essential

“I know many women get light physical therapy in the hospital after a double mastectomy, but it wasn’t a prescribed part of my recovery. I went through months of pain, stiffness, and weakness, and a tissue expander shifted into my armpit because I was never taught the right way to get up from a lying down position. It wasn’t until I met my fitness coach (she has a background in physical therapy and underwent a mastectomy herself) that I learned how simple it would have been to prevent a lot of the physical effects I had endured. (Here’s a video series she put together.) I always share this information when I’m asked for advice.” —Delilah Talbot

Everything Will Feel Different

“My implants are cold! I have to wear three extra tops when I go for a walk or snowshoe in the winter. Also, unless you see one of the few plastic surgeons who use nerve-sparing techniques, you won’t have any sensation after your mastectomy. If you choose a nipple-sparing mastectomy, as I did, those puppies will have no sensation—but they’ll always be “on.” I thought I’d never have to wear a bra again, post-mastectomy, but I still slip on a bra or cami if I wear thinner, light-colored shirts. —Kelly Shanahan

Don’t Drown In the Fear

“I wish I knew before my mastectomy that there’s no benefit to being scared. The best thing you can do ahead of time is to have a positive attitude. Have hope!” —Dana Kaplan Richter

You’ll Look at Yourself Differently

“I had a great plastic surgeon and I do love how I look—with clothes on. But when I get out of the shower or see myself naked, it’s a reminder of what I went through. No matter how much time passes—seven years, in my case—when I look in the mirror I still see the scars and the pieces of a puzzle put back together. It’s hard.” —Karen DeBernadis

The Emotional Pain May Come Later

“You might not have much time to think, initially. I went from diagnosis to game plan to healing physically, and it wasn’t until after that the emotional pain really kicked in. The good news is, there are so many resources available, when you’re ready: support groups, thriver programs, exercise programs, and bra fitting services. All can help you heal emotionally—and make you feel less alone in the journey. —Randi Cohen

You May Have to Toss All Your Bras

“I wish I had known ahead of time that even if I chose to get implants—which I did—my bras would never fit the same. It takes time to get used to your new body, but life does go on, and you will cherish it more. But that doesn’t happen overnight. Patience is key.” —Jessica Carr

*Quotes have been edited for length and clarity.

Originally Appeared on Glamour