Living with breast cancer can involve challenges during treatment and long after a treatment course ends. Side effects, fatigue, pain, recovery, decisions about next steps, and worries about recurrence can all affect daily life.

Recently, we asked MyBCTeam members which challenge currently has the biggest impact on them. Their comments highlighted both the physical effects of treatment and the emotional work of adjusting to an uncertain future.

What MyBCTeam Members Said

We asked: “What is the biggest challenge for you right now in managing breast cancer?”

Almost half chose treatment side effects or recovery. About 3 in 10 selected day-to-day symptoms or quality of life. Members also described difficult treatment decisions and worries that can continue even after treatment ends.

People may experience fatigue during or after breast cancer treatment, as well as joint pain, neuropathy (nerve damage), hot flashes, and other changes that affect quality of life. Side effects can vary from person to person and from one treatment to another.

One MyBCTeam member described trying two different treatments and experiencing difficult side effects. They said they’d been on one for 18 months “and the joint pain was too much.” They continued, “I took a four-month break and felt so much better, but my oncologist strongly advised we try a new med. … Everything came back: joint pain, hot flashes, and fatigue.”

“I took a four-month break and felt so much better, but my oncologist strongly advised we try a new med. … Everything came back: joint pain, hot flashes, and fatigue.”

— A MyBCTeam member

Another member shared the mixed effects of both an aromatase inhibitor (AI) and multiple surgeries: “I started taking my AI and, while the side effects are not debilitating, they interfere with quality of life. Four surgeries in four months is also interfering with recovery. But, I am improving and currently NED, so I’ll take that as a win!”

NED stands for “no evidence of disease.” It means that tests, scans, or physical exams currently show no signs of cancer in the body. NED doesn’t mean that cancer can never return, so follow-up care remains important.

What Might Help

A treatment that causes difficult side effects for one person may be easier for someone else to tolerate.

If side effects are affecting your daily life or quality of life, tell your oncologist. They may be able to suggest ways to manage your symptoms, adjust your dose, or recommend a different treatment. Members of MyBCTeam have also shared tips on managing symptoms and side effects, such as fatigue and skin and hair changes.

Never stop, pause, or change your treatment without talking to your oncologist first, as doing so could affect how well your treatment works.

Around 30 percent of respondents chose symptoms or quality of life. Members described mobility problems, lingering nerve changes, and having to adjust their expectations even when active treatment was over.

Peripheral neuropathy can cause numbness, weakness, balance problems, and difficulty walking or doing daily tasks. These changes may continue for some people after treatment ends.

One MyBCTeam member described how nerve damage affects their day-to-day life. “My hands are just in my fingertips, so that’s easy to live with, but then neuropathy in my feet, even though it’s not painful, makes balance harder and walking long distances hard.”

Another described how challenges unexpectedly persisted after they achieved remission: “I naively thought that once I went into remission, I could immediately revert to my former life. Wrong!”

“Lifelong food, exercise, and medication changes create challenges that I expend energy to cope with, energy that I anticipated using elsewhere. My life is simply slower while I adjust to my new normal.”

— A MyBCTeam member

What Might Help

Breast cancer can affect your daily life in unexpected ways, both during treatment and long after it ends. If symptoms such as neuropathy, fatigue, or balance problems affect your daily activities, ask your cancer care team whether rehabilitation services, such as physical or occupational therapy may help you improve mobility and manage everyday tasks.

It may also help to pace yourself, set realistic goals, and make room for rest when needed. Adjusting to changes in your abilities and routines can take time, and what works for you may change along the way.

About 12 percent chose deciding about treatment or next steps as their biggest challenge. Comments showed that weighing possible benefits against concerns about side effects could be emotionally exhausting.

One member shared: “I am in worse emotional despair than when I was diagnosed and had two surgeries in one month. Now I am clear, no evidence of carcinoma, and I can’t decide what to do.”

“I am in worse emotional despair than when I was diagnosed. … Now I am clear, no evidence of carcinoma, and I can’t decide what to do.”

— A MyBCTeam member

Another MyBCTeam member described feeling anxious about trying another hormone therapy after experiencing difficult side effects with previous medications: “I have tried two different estrogen blocker meds, and they gave me horrible side effects. Now they want me to take tamoxifen, and I am afraid to even start it.”

What Might Help

Treatment decisions are personal, and it’s understandable to feel anxious about what to do next. Ask your oncologist questions about the potential benefits, risks, and alternatives, including how each option might affect your quality of life.

Be open about your concerns, especially if you’ve experienced difficult side effects in the past. You can also ask whether more time to consider your options or a second opinion would be appropriate for you.

Talking with a mental health professional, loved one, or others living with breast cancer may also help you work through difficult emotions and feel more supported as you make decisions.

The “something else” comments highlighted fear of recurrence, caregiving responsibilities, and the emotional effects of living beyond active treatment.

One MyBCTeam member described ongoing worry about surveillance: “I have been finished with my course of treatment for two years. … I live daily with worry that I’m not having mammograms frequently enough. … I’m a mess.”

Another member described balancing their own health with caring for someone else: “Some days are difficult, and being a 24/7 caregiver for my mom, it’s a challenge, but I do very well. I stay positive and manage taking care of myself as well.”

What Might Help

If you’re worried about recurrence, ask your cancer care team to explain your follow-up care plan, including how often you need exams or other tests and what symptoms to report. Having a clear plan may help ease some of the uncertainty. You can also review breast cancer recurrence symptoms to watch for.

If caregiving or other responsibilities leave little time for your own needs, consider asking family or friends for help with everyday tasks. You can also explore breast cancer support resources. The National Cancer Institute recommends that caregivers seek support and make time for their own physical and emotional health, too.