It’s common and natural to worry or feel anxious about having side effects from breast cancer treatment. You might worry about pain or hair loss, dread the life disruption and demands of the treatment process, or just fear the unknown.
“People often have preconceived notions about what they think cancer treatment and side effects may look like,” says Allison Moskowitz Duggan, LCSW, an oncology social worker at CancerCare in New York City. Concerns about coping with side effects can bring symptoms of anxiety, such as ruminating on worries, having a hard time sleeping, and feeling on edge.
The reality can be more positive though. Not everyone experiences every side effect, and newer interventions can prevent or ease some of them.
Common Side Effects People Worry About
Chemotherapy
Side effects from chemotherapy can include hair loss, nausea, vomiting, diarrhea, fatigue, weight loss, fertility issues, and pain. But some approaches improve what used to be the norm. “For example, many people are choosing to do cold capping now, a treatment that includes putting on a cap that lowers the temperature of the scalp on one’s head during chemotherapy treatments, which can help prevent hair loss,” Duggan says.
Other ways to quell chemotherapy side effects include eating small meals and bland food to combat nausea, taking anti-nausea meds, balancing rest with exercise to fight fatigue, and staying well hydrated in case of bouts of vomiting and diarrhea.
Radiation
Side effects of radiation may include skin irritation, pain, and fatigue. It’s key to stay hydrated and keep the areas being radiated moisturized with creams and lotions. Get as much rest as you need, but after treatment ends, try to get out and walk regularly to boost your energy.
Surgery
Concerns about surgery can include what recovery will be like, lymphedema (when fluid from your lymph nodes can’t drain), body changes, and body image.
Staying on top of prescribed meds and doing the recommended stretching and exercises speed healing. Physical therapy can ease pain and boost your energy and appetite, while acupuncture and massage can also help soothe side effects.
Hormonal therapy
“Many people also have concerns about side effects from hormonal therapy, which may include hot flashes, night sweats, muscle and joint pain, bone loss, memory issues, and fatigue,” says Duggan.
Forming new lifestyle habits can lessen your side effects. So can natural supplements if your doctor OK’s them and they don’t clash with meds you take.
- Improve your health by not smoking and cutting back on alcohol.
- Focus on nutrition.
- Get enough exercise. This will help with weight gain as well as joint and muscle pain that can happen from hormone therapy.
- Use vaginal moisturizers or lubricants to keep your vaginal walls healthy and make sex more comfortable.
Targeted therapy
Targeted therapy uses special drugs to kill or slow the growth of certain proteins on breast cancer cells. Because it’s often used along with chemotherapy, some side effects — such as nausea, fatigue, and diarrhea — might overlap. Targeted therapy can also trigger changes in your heart rhythm, dry out skin or cause rashes, and cause numbness and pain in your feet and fingers.
Side effects of this treatment vary widely from person to person though. If you’re taking biologic targeted therapy for HER2+ breast cancer, your care team will monitor your heart with regular tests.
Life changes
“After my diagnosis, there was a lot of waiting and anxiety as to what my treatment plan would be, what my outcome and my lifestyle would be,” says Allie Bertocchini, of Coto de Caza, California, who was diagnosed with breast cancer at 41 and received care at City of Hope Cancer Center in Newport Beach, California. “One of the things I was worried about the most was telling my kids,” three boys then ages 13, 11, and 7. “I was worried about ruining their childhood, but when we told them, they surprised me with their compassion and support.”
Managing Side Effects of Fear and Anxiety
“I wasn’t sure what to expect,” says Cathy Leman, MA, RD, NSCA-CPT. She’s a Chicago-based registered dietitian and nutrition therapist and survivor of hormone receptor-positive breast cancer. “Even though I familiarized myself with the ‘potential’ side effects, I realized that I’d have to wait and see how I responded.”
Leman kept up her usual routine and did her best to stay her healthiest going into treatment. She also changed her mindset to realize “that I was ‘me,’ not a research statistic.”
“My side effects were minimal, but it’s important to understand that every woman can experience side effects differently.”
Load up on information
Side effect management is improving, but many people hold onto ideas about side effects from many decades ago, when interventions weren’t as advanced, Duggan notes. The best way to check these preconceived notions is to ask your medical team lots of questions.
You can use what you learn in different ways:
- Make a plan. Bring a list of questions to the medical team about your concerns, being sure to jot down what you’ll do if these side effects arise. You can then look back at these notes to reassure yourself. For example: “If I become nauseated and start to vomit, I’ll take the anti-nausea medication my doctor prescribed me.”
- Do further research. Bertocchini asked her care team how they decided which treatment was best for her and brushed up on the side effects. “I then went to my appointments ready with lists of questions to ask. This allowed me to plan for the days leading up to things, how it would be during something, and what to expect after.”
- Learn about alternative treatment options. Find out if it’s possible to switch to other treatments if you find side effects too difficult to manage.
- Bear in mind that cited side effects don’t always happen. “Not every woman experiences the side effects described,” Leman notes. “Understand how the treatment recommended for you works so you know what to expect, and lean on your treatment team to help you manage any side effects you do experience.”
- Gather insights from those who’ve been there. “I found it helpful to talk to others who’d been through it and join online support groups,” says Bertocchini. “I wanted first-hand knowledge as to what I could expect and how I could prepare.” These tips helped her make sure to take care of herself and her own needs, though it was hard for a mom of three. “I also made sure to follow all of the advice and instructions given to me from my care team. This helped tremendously for my healing.”
Develop positive coping tools
“Identify a way that works for you to help manage the worry,” Leman suggests, citing journaling, exercise, talk therapy, music, and movement as a few activities that helped her most. Other ideas:
- Develop a positive, supportive mantra. “This mantra should not be overly idealistic but provide encouragement during difficult moments,” says Duggan. Examples include, “I am doing everything I can to take care of my health and my body,” or “I am strong and resilient.” Repeating these to yourself can be comforting and help fend off negative thoughts. “I was sent a song by a friend that I found very calming,” Bertocchini says. “I would listen to it every day and sometimes on repeat as I prepared to go to appointments or get ready for a test or treatment.”
- Sleep. “I’ve also always found sleep to be a huge stress reliever for me,” Bertocchini says. “I’d take time during my day to nap, rest, and focus on what I could control.”
Lean on your support
Patients can turn to their support system and involve their caregivers to help manage their side effects, Duggan says. “Caregivers can come in many shapes and forms. They can provide practical support or emotional support by providing empathy, encouragement, or even distraction. Knowing one has a support system that’s there for them can help the patient feel that they’re not going through this alone.”
Let others help
Bertocchini found strong support from her husband, family, and friends. “People want to do things for you, and as hard as it is not to do things on your own, let them,” Bertocchini says. “This is a time where you need to focus on your body’s needs and lean into those who want to be there to help you.”
Bertocchini’s social support network was her backbone during treatment. “Unintentionally, we’ve banded together and created a network of women who can talk to and text to anyone who’s a friend, or friend of a friend, and try to help them through their journey.”
“It was a lifeline for me to be able to talk to a friend’s friend whom I’ve never met and have someone to text or call and talk to about all the scary things I was facing.”
Focus on What You Can Control
Leman, who developed a breast cancer nutrition program called Peaceful Plate, cites food as a major comfort and preoccupation many people have during treatment.
“A universal hallmark of a breast cancer diagnosis is feeling like everything is out of control,” she says. “That being said, the one thing people can control is their food: what to eat, how much to eat, when to eat, whether or not to eat something…. There are as many ways to control food as there are the number of people diagnosed with breast cancer.”
Someone going through treatment might feel like grabbing comfort where possible and eating what they like, which can be OK unless it’s a bingeing pattern that leads to feelings of guilt and remorse. Others might view their diagnosis as an opportunity to improve their nutritional health, which can be a great idea, unless their diet is super restrictive and deprivation oriented.
In general, though, food offers many chances to make your own decisions. “They can control the preparation method (baked, sauteed, fried, steamed), ingredients in a recipe (such as to reduce amounts, increase amounts, swap one item for another, add something, eliminate something), quality of ingredients/foods (buy organic or not),” and so on, Leman says.
Call On Your Care Team
“Patients are their own best advocates; the medical team can best assist if they know what the patient is coping with,” says Dunnan. “It may be helpful to keep a symptom journal, to track when symptoms are occurring, the duration, severity and impact it is having on a patient’s life. Patients may also benefit from knowing when they should contact their doctor vs. seeking emergency care, and what they can do at home to treat certain side effects.”
Look Into Palliative Care
Palliative care isn’t just for end of life, but because many people think it is, they don’t realize it’s an option to improve their quality of life during breast cancer treatment. A palliative care team helps you manage side effects and offers social and emotional support beyond what your medical care team can.
Palliative care usually has a multipronged approach, which could include:
- Recommending meds to improve side effects
- Complementary treatments (such as acupuncture and massage)
- Treatment for mental health concerns
- Support for emotional and spiritual needs
Ask your medical team for referrals to palliative care teams.
