Even when it’s over, it’s not over, says one cancer survivor, who recently completed her treatment. The emotional turmoil and lingering fear of what’s going to happen next—Am I really cured? Will it come back?—continue to haunt many breast cancer survivors during and well beyond the treatment process.
The fear was so overwhelming for 39-year-old Melissa Holm that she decided to have a double mastectomy. This was despite her doctor’s assurance that the cancer cells were limited to her right breast and the chance of the cancer spreading to the other breast was very slim.
“I didn’t want to live with that fear for the rest of my life,” says Holm, a mother of two young girls and a boy. “I just wanted them to take everything and start from scratch. I know others who have had a lumpectomy, and they worry before every appointment. My diagnosis came after a year of watching. I didn’t want to continue that waiting game.”
“The number of women choosing double mastectomy over a lumpectomy has doubled from about 3 percent to nearly 6 percent over the last 10 years,” says Margaret Block, M.D., a medical oncologist at Nebraska Cancer Specialists. “We don’t really know why, but a lot of it may stem from the fear and anxiety following a cancer diagnosis.”
The fear and shock of a cancer diagnosis can be overwhelming, notes Patti Higginbotham, APRN, AOCN, nurse practitioner with the Alegent Creighton Health Breast Health Center. “The first thought of 90 percent of women is that they are going to die.”
Even after getting through the initial shock, women still have to endure another year or more of treatment, which may include surgery, chemotherapy, radiation therapy, and breast reconstructive surgery.
“The number of women choosing double mastectomy over a lumpectomy has doubled from about 3 percent to nearly 6 percent over the last 10 years.” – Margaret Block, M.D., medical oncologist, Nebraska Cancer Specialists
For Holm, dealing with the loss of her breasts and then her hair were two of the biggest emotional challenges during treatment. “You go through a period where you don’t even feel like a woman anymore,” she says.
Then, there was the constant fatigue, malaise, and missing out on her children’s events, like plays, basketball and volleyball games, and school meetings. “I slept a lot on the weekends following chemotherapy,” recalls Holm. “My children barely saw me the entire weekend. Thankfully, my husband was there to take charge of the kids, but still care for me. He was my rock.”
While a cancer diagnosis is never easy, there are several steps women can take to help ease the physical and emotional impact of a breast cancer diagnosis, cancer experts say.
One of the most important of these is the support of family and friends. “Women who try to do it alone usually don’t do as well physically or emotionally,” says Higginbotham. “Part of our makeup as women is that we need to talk about it. If you don’t have someone that you can lean on, we encourage women to seek support through a cancer support group, our social worker, nurse navigators, or other members of our staff. It’s also very important that you have a health care person you can connect with. If you don’t have that partnership, then maybe you have the wrong provider.”
“I couldn’t have made it without the support of family and friends,” notes Holm. “There is strength in numbers. They gave me strength through some of the most difficult times. I had to lean on so many people. I couldn’t have made it without all of their help.”
“Women who are informed and have the facts also do better and make better decisions,” says Block. “Faster is not always better. Once you get the diagnosis, you need to take some time to get through the initial shock and then ask questions and do some research. Otherwise, women tend to make decisions based on emotions rather than facts.”
“…we’ve found that physical activity will help with the emotional [and] the physical side effects.” – Patti Higginbotham, APRN, AOCN, nurse practitioner, Alegent Creighton Health Breast Health Center
“We encourage women to stay engaged throughout the entire process,” adds Higginbotham. “Ask a lot of questions, let us know if you are having side effects, ask what you can do for yourself, and seek support.”
Exercise, sleep, and good nutrition can also help with physical healing. “I remember the days when we suggested to women to take a leave of absence from work and to rest as much as they can,” says Higginbotham. “We’ve done a complete 360 since then. Now, we tell women to keep working if they want and to start exercising after surgery, as we’ve found that physical activity will help with the emotional [and] the physical side effects.”
Depression and anxiety are also “side effects” of breast cancer that should be discussed with your provider. “Women shouldn’t be afraid to seek additional help if they have a significant amount of depression and anxiety,” says Dr. Block. “Sometimes, an anti-depressant can help a woman get through a really difficult time. While most women experience depression and anxiety following a cancer diagnosis, studies show that depression diminishes after treatment and recovery. Anxiety, however, can sometimes continue to linger.”
Life is getting back to normal for Holm. She completed breast reconstruction in late 2012 and says she is now focusing on turning her experience into a positive one by reaching out to others.
“I have volunteered to be a spokesperson for cancer survivors,” she says. “That regular interaction with other women and encouraging them to get mammograms or talking to women who are in the midst of treatment gives me strength.”
And she hopes to pass on some of that strength to others. “I’ve become a stronger person than I thought I was,” she says. “I have become more confident. I want to give other women hope—to let them know it isn’t easy, but you take one day at a time and count your blessings as you go.”