Life After Breast Cancer — Now What?

Dealing with the challenges that come after treatment

A sad woman at home sitting on the couch, looking down and touching her forehead

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By:

Hallie Levine,

AARP

En español

Published October 23, 2019

When Patti Tucker finished her breast cancer treatment four years ago, she assumed that, for the most part, her life would resume as normal.

It wasn't quite so easy.

"I had to get used to my body all over again,” Tucker, who's 57, recalls. This included coping with neuropathy, or nerve damage in her fingertips that left her hands numb and tingling, as well as the occasional leg pain and weakness that suddenly cropped up whenever she went on a long run. “Almost five years out, my body is still not the body I had for so many years,” says Tucker, a writer who lives in San Antonio. “And I'm slowly realizing that that body will never come back."

There are more than 3.5 million breast cancer survivors in the United States, according to the American Cancer Society. This includes women going through treatment as well as those who completed theirs years ago. But the roller coaster of emotions that accompanies a breast cancer diagnosis doesn't automatically stop once you've completed chemotherapy. “The survivorship phase is often even a tougher time because women now have to cope with worries about a recurrence, as well as the aftereffects of treatment,” explains Kathleen Ashton, a clinical health psychologist at the Cleveland Clinic Breast Center. “These struggles may be invisible to others, but they're very, very real.”

About 80 percent of women with breast cancer end up struggling with post-traumatic stress disorder (PTSD) in the first year post-diagnosis, according to a 2016 study. PTSD can linger for years: Another 2018 study, published in the journal Cancer, found that about 6 percent of women still struggle with the disorder's physical and mental symptoms four years later. “They may also still have fatigue, pain, sleep problems that affect their quality of life that they're grappling with,” Ashton adds. “But it's hard for their family and friends to understand why they're not happy that their cancer is ‘gone.'"

To top it off, survivors may feel like no one's looking after them, as their team of cancer specialists are now focused on new patients, and their primary care doctors may not have the time and experience to handle a former cancer patient's often-complex physical and emotional needs, adds Mary Dev, a social worker at the University of Texas MD Anderson Cancer Center in Houston.

Here's a look at four common posttreatment realities in the lives of breast cancer survivors, along with strategies for coping with them.

Fatigue

Bone-crushing exhaustion is a common side effect of breast cancer treatment, but it can persist for years after treatment ends. While some of it is physical, part of it is psychological. “I wanted to appear strong, even if inside I was still wrestling with sadness and anxiety,” says Shelly Fisher, 61, of Philadelphia, who was diagnosed with breast cancer almost a decade ago, in 2010. “I had this attitude of, I'll fake it until I make it, but it was utterly emotionally exhausting.”

This get-up-and-go attitude is common among breast cancer survivors, Ashton says. “Many women withdraw from activities during their cancer treatments because they're wrestling with fatigue and pain,” she explains. “Then, once they've finished and begin feeling better, they overdo it, trying to go back to work and resume all their normal activities. It's exhausting, both physically and mentally.”

The key, Ashton says, is for women to learn how to pace themselves. This may mean resuming work part-time for a year or two or pursuing only one or two activities a day. “There are days when I need more rest than usual, and I can't push myself as much as I used to when I did my long runs,” Tucker says. “I may never be able to get back to the level of activity I had before my diagnosis, and I'm slowly realizing that's OK."

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Fear of recurrence

Up to 70 percent of breast cancer survivors report fears of their disease returning, according to a study published this month in the journal Cancer. “No matter how much they remind themselves of everything they've done — surgery, chemotherapy, radiation, medications like tamoxifen to prevent a recurrence — that fear can still remain,” Ashton notes.

Talking about these feelings, either with family or friends or a support group, is important, Ashton says. Another good strategy may be to do a short course of acceptance and commitment therapy (ACT). This type of therapy focuses on teaching mindfulness skills, helping women to focus on the present moment whenever anxiety over the future threatens to railroad them. The Cancer journal study found, for instance, that breast cancer survivors who received ACT therapy for six weeks reported less anxiety and depression and a better quality of life six months after treatment than a control group. You can find a therapist experienced in ACT on the Association for Behavioral and Cognitive Therapies website.

You may also feel more empowered as a survivor if you and your oncologist have come up with a strong follow-up-care plan, Dev says. This will include a schedule for screening tests, a list of possible late or long-term side effects from treatment (and when to contact your oncologist), and lifestyle modification suggestions. Dev also recommends journaling, as a way of processing your emotions and handling stress. One small University of Kansas study found that women with early-stage breast cancer who wrote daily about their feelings (including dark thoughts like fear of dying) for three months after finishing treatment reported one-third fewer symptoms and doctor appointments than those who simply journaled about the facts of their treatment experience.

Body image issues

Breast cancer treatments can knock out more than just disease. Indeed, struggling with body image is one of the biggest challenges for survivors. “It's not just losing your breasts — it's struggling with other issues such as hair loss, weight gain from chemotherapy, and fatigue and joint pain from taking medications to prevent recurrence, like tamoxifen,” says Lisa Lurie, 59, cofounder of breast cancer shopping website Cancer Be Glammed, who was diagnosed with breast cancer 12 years ago.

Support groups can be particularly helpful in dealing with this issue, too. When researchers had over 131 breast cancer survivors who grappled with poor body image and/or problems with sexual functioning participate in eight weekly 90-minute group therapy sessions, they found that, a year later, the women reported significantly fewer concerns about how they looked and better body image than a control group.

Communication is also key, Ashton adds. “It doesn't always have to be about jumping back into sex. Women need to realize that it's fine to ease back into a romantic relationship with just physical contact and spending time together,” she says. While drugs like tamoxifen can reduce the risk of breast cancer recurring by up to 50 percent, they can also lead to loss of libido and other symptoms that can affect your sex drive, such as hot flashes. If you notice this, it's important to talk with your doctor; there are things that she can suggest that may help, like vaginal moisturizers and lubricants, or even a low-dose vaginal estrogen cream.

Lack of support

“The notion that breast cancer is the ‘good’ cancer drives me crazy,” says blogger Nancy Stordahl, author of Cancer Was Not a Gift & It Didn't Make Me a Better Person. “Many think it's a year or so out of your life and then you're done. Not so. People don't realize the scars are deep and long-lasting — the emotional ones as well as the physical ones.” Even more frustrating, she adds, is the belief by some that if a survivor simply adopts a healthy lifestyle, there's no chance of cancer recurring. “People sometimes think if a person's cancer recurs, it's somehow her fault,” Stordahl says. “Not true. It's mostly about biology and chance."

If you feel like your family and friends aren't providing the support you need, Ashton advises simply sitting down and talking with them. “People who are close to you are usually truly well meaning, but when they hear you voice something that upsets you, their tendency is usually to try to fix it, because they want to make you feel better,” she explains. “They don't realize that sometimes a survivor just wants to be heard.” If you can name your specific emotion — anger or sadness or even guilt — and say that you just need to vent, chances are that both you and your loved ones will feel better.

Or you could do what Fisher did, which was to go to a jeweler and have him make a necklace engraved with the words, “One tough b----.” (She recently launched a jewelry line with the exact same name.) Fisher wears it today backward, so no one can see the message. “I consider it a sort of talisman that I can use to give me the strength to power through,” she says. “Whenever I get nervous or anxious, I grab on to it and remember that I'll be OK."

Hallie Levine is a contributing writer and an award-winning medical and health reporter. Her work has appeared in The New York Times, Consumer Reports, Real Simple, Health and Time, among other publications.

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