Getting the tools you need, communicating with loved ones and being patient can make all the difference in your recovery.

Sometimes, no matter how well versed you think you are about something, nothing can prepare you for its reality. After I was diagnosed with an aggressive breast tumor at 23, I did extensive research and consulted with a number of leading organizations, doctors and experts. But after having a double mastectomy at 25 following a breast cancer recurrence, I still had no clue what I was in for.

When I asked my doctor what was next, his answer was less than helpful. Have a nice life, he said. Be grateful to be alive! You’re done, so celebrate! But you’re not done, you’re just beginning. And as any breast cancer survivor knows, the physical and psychological effects can be devastating. My experience later led me to help develop the Breast Cancer Survivorship Program at Johns Hopkins with a team of leading experts including oncologists, primary care providers and cancer researchers. Our goal, along with other such hospital programs, is to give women the help and tools they need to prepare for, survive and deal with life after cancer.

Physical effects

A couple of days following surgery, you’ll have very limited range of motion in your arms. That means you can’t go to the bathroom alone, open a door, button a blouse or shampoo your hair. The surgical drains are uncomfortable, your whole core and back hurt, and the surgery and/or anesthesia have sapped your strength. You can’t sit up in bed, reach for a glass of water or get on your stomach.

Every woman should know the physical effects and limitations to expect following the procedure. Many patients are distracted right before surgery and retain only 10 percent of what they hear, so they need to receive the facts several times, both orally and in writing:

  • Go to physical therapy before surgery. You’ll need to learn exercises to perform after surgery, but you can’t be shown them at that point. Women who aren’t proactive about therapy tend to stay immobile, and their muscles may atrophy.
  • Purchase special mastectomy bras that fasten in front, pillows on which to lie and button-down shirts instead of pullovers.

Emotional and psychological aftermath

The first time I looked at myself in the mirror, I felt like a part of who I was had left leaving only huge incisions. Even with a reconstruction, I felt like the lowest of the low. In reality, it took two slow years for the healing to take place. While you still mourn the loss of your breast, it gets easier as time passes and you learn to accept that it is not what defines you.

Intimacy with a partner or spouse can also be affected. When I first approached my partner, he wasn’t responsive because he was afraid he would hurt me. Communication became key between us. While some partners are supportive, others don’t know what to do or say. Your partner may need emotional and educational support, as they will be affected during the change as well. In addition, I recommend accessing online resources such as the survivorship website available at hopkinsmedicine.org for news, updates and seminar videos, along with the Kimmel Center blog at cancer-matters. blogs.hopkinsmedicine.org.

Preventive mastectomy

When Angelina Jolie made headlines with her elective bilateral (double) mastectomy, my phone rang off the wall with high-risk patients who wanted to follow suit immediately. My response? While there are many reasons to get the procedure (including known genetic mutations that put you at greater risk for breast and ovarian cancers), I warn women against making a fear-based decision. Take the time to research, process the information, view post surgery pictures, discuss techniques, weigh the pros and cons, and always get a second medical opinion. Then you’ll know you’ve made an informed decision that is best for you and your family.

Elissa T. Bantug, M.H.S., a two-time cancer survivor, runs the Breast Cancer Survivorship Program at the Johns Hopkins Sidney Kimmel Comprehensive Cancer Center. She has sat on the Susan G. Komen Multicultural Advisory Board and Livestrong Young Adult Alliance. Ms. Bantug holds an undergraduate degree from Georgetown University in Women’s Health and a Masters in Health Behavior and Health Education with a concentration in Health Communication from the Johns Hopkins Bloomberg School of Public Health.