From self-focus to community care: Lisa Walker’s life after breast cancer

A diagnosis in lockdown

In April 2020, Lisa noticed a lump while getting ready for bed. At first, she kept it to herself.

“I didn’t want to worry anybody,” she recalls. “It was bizarre going through the motions of daily life in lockdown, like baking and doing those car parades to celebrate others’ accomplishments, while holding in this possibly life changing news.” Only when she scheduled an appointment did she tell her family.

Because of reduced hospital demand during the pandemic, her care moved quickly. In one day, she had a diagnostic mammogram, ultrasound, and biopsy. On May 8, 2020, she was diagnosed with triple-positive breast cancer.

Her diagnosis of stage I, grade 3 meant the cancer was aggressive but very treatable. Lisa describes feeling calm, almost resigned. She remembered the statistics regarding 1 in 8 women being diagnosed with breast cancer. No one in her family of eight women had been diagnosed with breast cancer, and she concluded, “I’m the one who can handle this. Better me than my mom, my sister, or my cousins with young kids.”

Keeping it close

Lisa’s family is close. Her parents live on one side of her house, her sister and her sister’s family on the other. But she didn’t want to lean on them. Fiercely independent, she didn’t want anyone to feel bad for her. “I didn’t want anyone saying, ‘Oh, poor Lisa,’” she explains. “I’m fine.”

She told her father, and he broke the news to her mother and sister, who were devastated. Lisa often found herself comforting them instead of the other way around. “You, as the person diagnosed, now have to take care of the people around you,” she says.

But the pandemic made emotional caretaking easier for Lisa. Because of restrictions, she couldn’t bring anyone to her appointments or sit with loved ones in waiting rooms. She could move through the different stages of treatment on her own terms.

Daily life stayed private, too. With lockdowns in place, there were no visitors at her home, no meal trains to manage, and no social events she had to face with visible side effects. Lisa went to her online classes, did her grocery shopping, and otherwise kept to herself, which suited her private nature.

“COVID was perfect for me,” she says. “I enjoyed having my privacy. I’m not a ‘look at me, give me attention’ type of person.”

Life-changing choices

Lisa’s treatment moved quickly: surgery in June, chemotherapy in July, and radiation therapy soon after. Her side effects were mild: brief insomnia, hip pain, and hair loss, which she approached with humor. “I have a good-shaped head,” she jokes. “Now I’m not afraid of short hairstyles.”

At the same time, she continued her full-time online studies in healthcare administration. “I still did full-time school, and my grades were excellent,” she says. “We just added a little spice with breast cancer.”

Treatment brought more than physical changes. Because her cancer was triple-positive, her doctors recommended ovarian suppression to stop estrogen from fueling the disease. Lisa’s treatment was paid for by Medicaid, which did not include egg retrieval. At 36, she faced the choice: preserve her fertility or begin life-saving treatment.

“It was just like a now-or-never moment,” she remembers. “Are we going to do this Zoladex shot and suppress your ovaries? And it’s like, well, we have to stop it. I remember the day of my first shot. I was getting ready for bed, and it hit me like a ton of bricks. I still wasn’t sure that I wanted kids, but knowing that that option was off the table was very upsetting. I sobbed myself to sleep.”

“There’s a lot of feeling of uncontrollable,” Lisa says, reflecting. “I had a say, but I didn’t really have a say, because I wanted to get better, and this is what I had to do.”

Life after cancer: The body remembers

While Lisa describes her treatment as manageable, life after cancer came as a shock.

“Everyone thinks it should be wonderful because you don’t have cancer anymore,” she explains. “But the mental scars are still there. The body remembers every call from the doctor’s office and every scan that had to be performed.”

Even routine messages from her oncologist’s office can stir up anxiety and take her right back to the uncertainty of active treatment. At the doctor’s office, she finds herself looking at the others in the waiting room at different stages of their treatments, wondering what they have, what their prognosis is, and why she got off “easy.”

Supporting others can also pull her back to the feelings she had during her diagnosis. When a family member recently had a cancer scare, Lisa was the first call for questions and reassurance. “All of a sudden I was back in 2020, going through it again,” she admits. According to Lisa, it’s a balancing act: wanting to offer support while protecting herself from reliving her own fears.

Fertility loss adds another layer of complexity, especially as she has watched friends and relatives move forward with young families. “Being so young, the chance to have children, whether I wanted to or not, is gone,” she says. “And that’s a really hard thing to sit with.”

But Lisa also emphasizes that survivorship is not just the journey of the person diagnosed. Family members and loved ones often carry their own fears, sometimes more openly. “It’s important to keep in mind that your partner and your family are also going through it with you,” she says. She saw this with her own mother, who often cried after Lisa’s diagnosis, and with her family member’s spouse, who became anxious about the health scare.

It wasn’t until she joined Living Beyond Breast Cancer’s Young Advocate Program in 2024 that Lisa felt truly seen and understood.

“I met 20-some new best friends because we all knew what we were going through,” she recalls. “We were all angry about the confusion, the insurance battles, the loss of control.” That sense of community helped her feel supported and inspired her to create change for others.

From private person to public health advocate

In 2021, Lisa became a community health representative (CHR) at the NHBP tribe’s health clinic. In that role, she works directly with community members to connect them to resources, guide them through medical appointments, and provide education about prevention and screening.

“Everyone needs a CHR in their life,” she says. “Someone who can look up resources and help you see things you might have a blinder on about.” She often helps patients navigate confusing paperwork, find transportation, or simply understand what questions to ask their doctors.

She also quickly saw the barriers keeping Indigenous women from accessing breast cancer screening: mistrust of Western medicine, cultural privacy norms, and long travel times. Determined to change this, Lisa brought a mobile mammography bus to her community. The first event was so successful that women walked up asking to be screened — and one participant’s early-stage cancer was found.

“If it helps one person, it’s worth it 100%,” Lisa says. Today, the program runs twice a year in two locations and has improved screening rates by 20% as of 2024.

Her work has since expanded quality improvement efforts at the clinic and a campaign for colon cancer was rolled out shortly after. Working on her Master of Public Health degree, Lisa created a cervical cancer screening campaign as part of her practicum. She also serves on county and health system equity councils focused on Medicaid access.

Through it all, Lisa sees her role as filling in the gaps that healthcare systems often miss. “It does bring me joy to help people and help them access care and resources, trying to help them live their best and healthiest life.”

Thinking about fertility or family-building after breast cancer?

Lisa’s experience shows how little time there can be to make these choices, and how hard it can be to live with the decisions afterwards. If you or someone you know has time to pause before treatment, there are programs that may help cover fertility preservation and family-building costs.

Start here:

• Facing Our Risk of Cancer Empowered (FORCE): facingourrisk.org/support/find-financial-assistance/fertility-preservation – a trusted list of grants and programs for people facing or recovering from cancer.
• Gift of Adoption Fund: giftofadoption.org – provides grants to help complete adoptions.
• Tinina Q. Cade Foundation: cadefoundation.org – offers up to $10,000 for infertility treatment or domestic adoption.
• Additional resources:  fertilitywithinreach.org/grants and payitforwardfertility.org/grants provide searchable lists of national and regional programs that help offset fertility preservation and treatment costs.