How to Be a Caregiver for Someone With Breast Cancer

“It’s too much one for one person to take in,” Jefferson says.

When Frank Tantillo, 72, of Austin, Texas, supported his late girlfriend Katherine Owen through a decade with stage 4 breast cancer, he says he not only went to her appointments but recorded them for her grown children. He also put every appointment and procedure date on a digital calendar everyone could access.

The treatment plan for your loved one might start with surgery to remove the breast lump (lumpectomy) or the whole breast (mastectomy), depending on their diagnosis, other health factors, and sometimes their preferences.  Or they might get surgery later or not at all. Different treatments are often, but not always, added. Chemotherapy, which uses powerful chemicals to kill cancer cells, can come before surgery or after it. When surgery isn’t in the cards, as it wasn’t for Marlyn Washburn, doctors may still offer treatments such as chemotherapy and radiation, which Washburn got to shrink tumors in his brain and relieve shoulder pain caused by the cancer, Patricia Washburn says.

Treatment plans can change over time. Patient preferences may drive some choices, such as how to time treatments with heavy side effects, Rocque says.  “As cancer care gets more complex, and as we have more availability of really good new treatments, that inherently means that there are oftentimes more choices and there are more gray areas.”

Frank Tantillo, 72, of Austin, Texas, says intense cancer treatment kept his girlfriend, Katherine Owen’s, breast cancer in check for 10 years. The couple enjoyed a scuba dive trip to Key West, Florida, in 2011, three years after her stage 4 diagnosis.

Courtesy Frank Tantillo

Helping your loved one through treatment

When a loved one has breast cancer, there’s a lot to manage, from medications to household chores for someone who may be too sick, weak or tired from chemo, radiation, or recent surgery to follow usual routines. You might be the person who drives them to daily radiation treatments for weeks or finds the foods they can tolerate when chemo ruins their appetite.

In some cases, you may need to help with things like showering and using the toilet, or getting financial affairs in order. Washburn did those things for her husband in his final weeks. 

Often, a caregiver may need to get hands-on training from a nurse on how to handle drains that may be put in after breast cancer surgery. This includes looking for swelling or pain, which may indicate infection, and charting fluid output, says Rocque.

Patricia Washburn and her late husband, Marlyn, at the time of his diagnosis in December 2016.

Courtesy Patricia Washburn

But your most important role might be as a “listening ear,” Jefferson says. “That person going through the cancer is going through so many different emotions. They’re up, they’re down, they’re happy, they’re sad, they’re angry. Just be there for that person.”

Rayfield says she’ll never forget the times Jefferson took her for rides during the worst of her chemotherapy side effects.  “I was so sick that I couldn’t walk, I couldn’t do anything, I couldn’t hold my head up. And she would just say, ‘I'm coming to get you…’ We used to just ride it out.”

For partners and spouses, caring for someone with breast cancer can also mean understanding how it may affect a loved one’s body image and feelings about sexual intimacy. That’s because treatments can cause temporary changes, like hair loss from chemotherapy, as well as permanent changes, including how their body looks and feels after surgery. Caregivers can also play an important role in procuring a wig for a partner or older parent or shopping for mastectomy bras or breast prostheses.​

“I think it can be really hard on that partner to go through this because they don't want to say the wrong thing,” or do the wrong thing, Montesano says. But, she says, it’s best to have open conversations. Doctors, social workers and others on the care team can help guide you, she says, but “unfortunately, the conversations just don't happen enough.”​

The healthcare team can support caregivers, too

Jefferson and Rayfield say they were especially helped, as both patients and caregivers, by nurse navigators who helped coordinate care and answered any questions they had. Such navigators can also be social workers or trained volunteers, but not all cancer programs offer them.

You might also consult with dieticians, mental health professionals, or financial counselors, Montesano says. And the cancer care team can coach you on home care after surgery, chemotherapy, and other treatments.

To avoid burnout, many caregivers need to ask friends and family for help as well, English says.

“This is going to be a marathon and not a sprint,” she says. It’s best to “pace yourself” and delegate some tasks to others.

The toll on caregivers

Caregivers have “their own stressors and their worries and fears,” but often keep them “bottled up,” to keep the focus on the person with cancer, Montesano says.

But “in order to be a good teammate, you have to take care of yourself,” says Hardeman, a retired communications professor who wrote a book, The Shadow of Trepidation: Reflections on Caregiving During My Wife’s Battle with Breast Cancer.

He says he learned the hard way to take better care of himself, after a racing heartbeat, chest pains, and shortness of breath sent him to the emergency room one night. He had “stress-induced atrial fibrillation,” a heart rhythm disturbance, he says. He has a history of coronary artery disease, so the episode was especially scary.

It was also a wake-up call. After that, he says, he focused on small victories and good days to reduce his stress. He also took friends up on offers to help and let them know exactly how to do it.  “I started making lists,” he says, for everything from meals to car maintenance.

Help is also available from a wider circle. For example, major cancer centers, such as Fred Hutchinson provide caregiver guides. So do the American Cancer Society and other groups. Some peer support groups can pair patients and caregivers with others who’ve walked in their shoes. Washburn and Tantillo are volunteers for one such group, called Imerman Angels. Help line counselors at groups including the ACS (1-800-227-2345) and Susan G. Komen (1-877-465-6636 or helpline@komen.org) can help you find support as well.

“Caring for someone diagnosed with cancer can be physically exhausting and emotionally draining,” Makaroff says, so no one should go through it alone.

Patricia Washburn travels the United States in the "Marlyn Mobile" and considers this her moving billboard to her husband.

Courtesy Patricia Washburn

The long haul

For some, breast cancer treatment continues for years. That includes a growing number who take hormonal medications that lower the risk of recurrence, as well as those with metastatic cancer (cancer that has spread and can’t be cured) who take a variety of medications to extend life and manage symptoms. 

Tantillo says the medications Owen took to keep her cancer in check for 10 years bought them precious time. Owen died in 2018, a month before her 66th birthday.

But before that, she joined Tantillo for many motorcycle rides and got certified in scuba diving. The two took diving trips and she travelled with her children to Ireland, he says. Every time she got in her car, he says, she fired up a recording of the Survivor song “Eye of the Tiger,” and sang along.

But survival, whether treatment continues or not, can come with lingering side effects, Rocque says.

“Sometimes people have a really long recovery,” she says. While friends and family might expect them to be “back to normal” as soon as initial treatment ends, “that's just not realistic,” she says. Lingering effects can include chronic fatigue and foggy thinking, she says. 

A common after effect of chemotherapy is peripheral neuropathy, which is nerve damage leading to numbness, tingling, and pain, often in hands and feet. After breast cancer, some people also develop lymphedema, a condition in which fluid builds up in an arm, causing swelling and, sometimes, pain. It’s caused by lymph node removal and can be worsened by radiation. Hardeman says his wife continues to deal with both neuropathy and lymphedema, as well as side effects from ongoing hormone treatment meant to prevent a recurrence.

“The storm is over, but the cleanup from the storm will forever remain,” he says. “But she's still here with me, and that's the most important thing.”