What to Do When the Woman in Your Life Has Breast Cancer
Oct 29, 2017 Cedars-Sinai Staff
This year, over a quarter million women in the US are expected to be diagnosed with breast cancer. That means plenty of spouses and partners will step up and learn to become caregivers. Thoughtfully supporting a loved one with breast cancer is essential, because treatment often brings physical, psychological, and emotional challenges.
A mastectomy can lead to body-image concerns. Chemotherapy and anti-estrogen hormonal drugs may have significant side effects. Existential and spiritual issues may also arise for anybody facing a cancer diagnosis.
"I see it every day. People who have a great caregiver in their lives generally get through treatment better than patients who are more isolated."
We asked Cedars-Sinai experts and a husband who has been a caregiver how to be the rock a woman needs during this difficult time. For starters, a partner should know that their support is potentially lifesaving.
"It can make a profound difference," says Dr. Arash Asher, director of Cancer Rehabilitation and Survivorship at Cedar-Sinai's Samuel Oschin Comprehensive Cancer Institute. "I see it every day. People who have a great caregiver in their lives generally get through treatment better than patients who are more isolated." In fact, there's evidence that chronic loneliness can worsen outcomes. Women who don't have strong social ties, or who lack the support of a partner, have a higher risk of recurrence and poorer survival rates.
Ways you can help a partner who has breast cancer
Take notes in the doctor's office
Getting biopsies, tumor marker tests, and imaging studies can be overwhelming. There may be multiple specialists who must coordinate care. Treatment plans might be detailed and long. It's invaluable to have someone in a doctor's office who can take notes on behalf of the patient. A significant other can also keep a calendar of visits and help track the use of medication.
Practical assistance is especially important when a patient suffers from so-called chemo brain—that foggy or forgetful feeling many patients experience. An extra set of eyes and ears to help with logistical details can allow your partner to focus on recovery.
Help her cope with fatigue
Fatigue is the number one distressing symptom for most cancer survivors. The problem can last weeks, months, or even years following treatment. It's important for caregivers to know that this fatigue is different from ordinary exhaustion. A nap won't necessarily help.
"People who have cancer fatigue will sleep eight hours and may still feel like a truck ran over them," Dr. Asher explains. "A woman may feel wiped out after walking up a flight of stairs. Her partner needs to recognize that this isn't ordinary tiredness. About a third of women continue to have fatigue long after treatment has ended."
"You may be disease-free but not free of your disease."
The estrogen-blocking drugs prescribed for some breast cancers can also contribute to exhaustion, as well as joint pain, hot flashes, and other side effects. Not every woman experiences these problems. But while chemotherapy might be 4 cycles and radiation 6 weeks, hormonal side effects can last 5 or even 10 years. Physicians in the Cancer Rehabilitation and Survivorship program often say, "You may be disease-free but not free of your disease."
Don't label the side effects or complications
Ziva Naghiyeva, an Oncology Supportive Care Services clinical social worker at Cedars-Sinai, explains that significant others might feel tempted to "diagnose" the physical and psychological changes their loved ones experience during treatment in hopes of finding a cure for those secondary complications.
"Report these issues to your medical team, but try to avoid labeling them, especially in front of your loved one," she advises. "You may be rightfully anxious about her nausea or sadness. But labeling these temporary side effects as symptoms of early onset anorexia or depression might be over-pathologizing an already serious medical condition. What you see may be a worrisome departure from how the patient was prior to the diagnosis, but it's a common reaction to harsher treatments. We expect our patients to experience some of those unpleasant side effects, and fortunately, they are not permanent."
Know that sometimes you can't do anything
It is important for partners to accept that there will be times when their ability to help a patient is limited. There is significant value in simply remaining present.
"Finding the right words to soothe someone who is in pain will sometimes be difficult," Ziva says. "But nonverbal communication can be comforting, too. Holding her hand and not being afraid to look her in the eye conveys that you are not intimidated by this disease, that you continue to witness and love her."
What about sex?
Painful intercourse and decreased libido are frequently reported during and after breast cancer treatment. Body-image challenges may also impact sexuality.
Supportive care social workers at the hospital agree that partners would be wise to avoid expectations and to think creatively about achieving intimacy. Often, a partner will find their loved one as sexy and desirable as ever. Communicating this can be comforting to her, along with being patient and open to different ways of expressing physical love. Couples can listen to music together and still do a lot of touching and kissing. Though it may not build to the usual crescendo, this physicality is important for both parties.
If you have children, try to maintain normalcy for them
Kids can sense when they are being shut out. A child's fears may snowball if grownups are secretive about a diagnosis. Parents should jointly explain the situation to their kids in an age-appropriate way. From there, the partner's job is to help preserve as much status quo as possible.
Devyn Osborne and his wife, Moira Kamgar, a breast cancer patient at Cedars-Sinai, have 4 children. Though their youngest was already in high school when Moira started chemotherapy, more of the household duties, including driving the kids to school, fell to Devyn. "I'm ordinarily just the sous-chef and dishwasher in our house," Devyn admits. "But I think it was particularly important for our children to keep eating home-cooked meals. That's what normalcy looked like for us. We were lucky because some friends started a Meal Train for my family. It kept our home life feeling consistent and was healthier than eating take-out every night."
Remember to get your own support
When a woman is undergoing breast cancer treatment, it may be helpful for her partner to express their own anxieties to a close friend or support group. There is already a great burden on the patient. If a woman perceives that her partner is also feeling vulnerable and overwhelmed, she could decide not to share her concerns and fears. Partners do need support, but not always from the person actively fighting cancer.
"If I see that a partner seems anxious or worried, I talk to them about establishing their own self-care routine," says Ziva. "We frequently provide psycho-education on the subject of caregiver burnout using the Ring Theory approach. If the partners are the first-in-line defense for their loved ones going through treatment, there should be a second ring of support exclusively for these partners. They need a trusted friend, family member, or therapist as an outlet for their own feelings, which will continue to build if neglected."
It has been two years since Moira was diagnosed with breast cancer. Her family is cautious but optimistic about her chances for a full recovery. Devyn, meanwhile, has learned a thing or two about being a caregiver.
Trust your doctors
"Trust the doctors that you've chosen. Listen to your doubts and be inquisitive, but ultimately put your full confidence in the experts caring for your wife. We were able to do that at Cedars-Sinai, because we trusted everyone—from the front desk to Dr. Monica Mita, our oncologist."
Don't be afraid to ask questions
"Call the doctor and ask them about anything, especially in the beginning of treatment when there's so much you don't know. Patients at Cedars-Sinai have that 24-hour nurse line. If the nurses can't answer your question, they'll call the doctor for you. But no matter what hospital is treating your wife, a lot of things happen that can seem worrisome. For peace of mind, don't be afraid to ask questions."
Get help where you can and accept the gifts that are offered
"You may not want to burden other people, but it's usually too difficult to care for your partner and family on your own. I think a lot of guys, especially, have trouble asking for help. You are also so busy during treatment that it's hard to stop and figure out what you need. So accept help preparing meals or running errands. Even the little things can end up being really important."
"We can either go through this together laughing, or go through it kicking and screaming."
Humor and gratitude are good things
Along with gratitude and a strong sense of purpose, humor is a coping strategy often discussed by Dr. Asher and his team. Devyn agrees that finding lighter moments has helped his wife heal. "She was the one who told me, 'We can either go through this together laughing, or go through it kicking and screaming.' She used humor to own some of the side effects. I encouraged that," Devyn recalls. "When she was starting to lose her hair during chemotherapy, she cut it off herself in stages. But she had fun dyeing it pink, too. She loved the way that looked."
"I think I also understand how gratitude plays into this," he adds. "Not that we're supposed to be grateful for cancer. But Dr. Asher says that people who experience gratitude on a regular basis are more resilient to this kind of hardship. That feels right. We don't have to wait for life to be perfect before experiencing a moment of gratitude. It's probably the other way around. We experience gratitude, and then, hopefully, happiness follows."