“It’s less scary when you’re more prepared”: An extended family’s cancer journey

A family history of open communication helped Amanda be proactive about protecting her health

A family history of cancer is a fact of life for many people, and Amanda’s family is no different. Her mother had breast cancer when Amanda was 8. Her grandmother had breast cancer. Her great-grandmother had breast cancer, too, and passed away when Amanda’s grandmother was only 5.

So, out of necessity, Amanda’s parents talked directly to her and her brother about cancer throughout their childhoods.

“Cancer can be such a taboo thing for people to talk about,” said Amanda. “My mom has always been a huge advocate for sharing. When we were younger, she was careful about approaching the conversation, but she was open about ‘these are the things you’re going to see me go through, and these are risks.’ I already knew my grandma and aunt had breast cancer, and so did my mom’s cousin—so it wasn’t some foreign thing to me.”

Because of that, when Amanda watched her mother go through cancer treatment, she knew her mom was sick, but she wasn’t afraid she would die. Having those direct conversations made cancer a little less scary.

Amanda starts planning for her future, starting with a genetic test
 

Amanda can be direct and funny about her family’s experiences with cancer (“We try to have a sense of humor”) while aware of how difficult this subject can be for people who have experienced cancer or are worried about experiencing it in the future.

Amanda tells her story the way her mom did: with consideration for the anxiety it can cause and hope that talking openly will help ease that fear.

The first time Amanda publicly shared her genetic story, she was in her early 20s. She’d been thinking about undergoing a genetic test for a while. Her mother was tested in 1999, so Amanda knew it was a tool she could use to better understand her health risks.

The genetic test came back positive for the BRCA2 variant, which markedly increases her risk of developing breast cancer.¹ It wasn’t the news she wanted, but it wasn’t unexpected.

Amanda took it in stride. “I’m not too worried about my future,” she said then. “Getting genetic testing helped because now we have a plan and understand my risks better.”

Once Amanda understood her genetic risk, she started considering preventive measures. She knew she wanted to have a double mastectomy (a way of treating or preventing cancer by surgically removing all or part of the breasts) around the time she turned 30. Amanda also knew she wanted to have kids, so if she planned to breastfeed, she’d need to become a parent in her 20s before her surgery. “That was my target date—knowing, you know, life happens.”

Life as a breast cancer “previvor”

Amanda spent the next decade creating lasting relationships, starting a family and embarking on a career. When she met her future husband, Charley, she had open conversations about her health and hopes, which he completely supported.

On the job, Amanda brought her “previvor” perspective to her work in medical communications. While updating a website on cancer treatment, she advocated for including information for people who, like her, have a family history or live with an inherited genetic variant that predisposes them to cancer. As a previvor, “it can feel isolating to be in an in-between area. You can’t completely connect with those who are cancer-free or those who had cancer and went through treatment,” she said.

In addition to this, “most communications about cancer don’t yet think about younger people who are BRCA variant positive and want to take potential next steps,” Amanda said. She hoped to help previvors know where to start and who to connect with as they considered preventive health options like talking to a genetic counselor or considering surgery.

Amanda and Charley married in 2015 and had their first child in 2017. “Levin is our sweet, thoughtful, incredibly observant and empathetic eldest,” she said, “and Theo is our wild little firecracker.”

Theo was born in the spring of 2020, at the beginning of the COVID-19 pandemic. At the time, Levin was 2—not quite old enough to understand why his family had to wear masks and observe social distancing, but old enough to start absorbing his parents’ concern for keeping the family safe from sickness.

Amanda turned 30 that year, but the pandemic changed her plans for preventive surgery, as it changed so many plans for so many people. “A lot of elective surgeries were on hold,” she said. “So I had to wait a little bit longer.”

She worked with her doctors to set a surgery date for summer 2022. Then, in the winter of 2022, Charley received some shocking news: He had testicular cancer.

“His brother had testicular cancer when he was 21, so he knew to look out for it. But it still completely threw us off. We had a busy year planned, with two destination weddings. The week after he found out, we went to Hawaii for my best friend’s wedding, and he was totally overwhelmed,” Amanda said.

As soon as they returned from the trip, Charley had surgery. “We thought his treatment was done. We even joked a little bit. I was like, ‘Hey! You stole my thunder! I was supposed to be the one dealing with cancer stuff,’ and he was like, ‘I know! I don’t want this—you can have it!’”

That April, Theo turned 2. “When I asked him what theme he wanted for his birthday party,” Amanda said, “he only told me ‘Tacos!’ So we did a Taco TWOSday theme.”

Meanwhile, his brother Levin was learning to swim, playing soccer and getting closer to riding a bike without training wheels.

As spring turned to summer, the boys grew, Charley healed from his surgery, and Amanda prepared to undergo the mastectomy she’d planned all those years ago.

Unexpected health news for Amanda and Charley

Then, life threw them another curveball. A checkup indicated Charley still had cancer in his system. His doctors recommended chemotherapy. “Which, again, overwhelmed us,” Amanda said.

Charley was supposed to start chemotherapy the week before Amanda had her surgery. “I was like, ‘I know I’ve been planning this, this has always been my goal, but maybe I should put it off. Maybe we should only deal with one thing at a time.’”

“My husband said no way. We’ll make it work. We have a great family who can work with us and help with the kids.” Even though the timing was difficult, Amanda knew with her family history and genetic risk, following through with her surgery was the right choice. So Charley started chemo, and the following week, Amanda went to the hospital for her mastectomy.

It was successful in more ways than she anticipated.

“My oncologist came back after and said they found a centimeter of cancer. If I’d put the surgery off for another year, I might’ve been in the same situation as my husband with chemotherapy or radiation.”

When she got the news, she was almost relieved. Amanda had spent years of her life developing a plan to evade cancer. Now, here it was: the thing she’d been afraid of—and she’d had the luck to catch it before the cancer could spread.

Healing from her mastectomy while Charley weathered the effects of chemotherapy was an enormous challenge. But with the help of family, friends and co-workers who watched the kids, brought meals and helped them around the house, Amanda and Charley got through it together.

Telling her story so others can feel more comfortable with their own
 

Amanda’s willingness to tell her story includes being open to answering questions when people are curious. When her cousin was considering a preventive mastectomy, she called Amanda to ask about the pros and cons of reconstructive surgery.

To reduce her cancer risk, Amanda had chosen not to spare her nipples during her mastectomy. She joked, “It’s awesome. Now I don’t have to wear a bra!”

Amanda remembers another time at a bachelorette party for a cousin on her father’s side. When she changed her top amidst the group of women, they began to ask about her experience getting a preventive mastectomy.

“They were like, ‘Can I see?’” she laughed. “People are curious, and that can open the door to interesting conversations that make having cancer and taking preventive measures feel a little bit more normal.”

Her family members have all chosen different options for their mastectomies and reconstructions, so they talk with each other about their experiences and help each other make decisions that are right for them.

“I have a spreadsheet for the whole family that keeps track of their ages, who had what cancer, when, what treatments they underwent, when they got genetic testing and what variants they have.”

This knowledge has helped Amanda and her family talk more easily with their doctors. “They might red flag your file, for example, to make sure they’re paying extra attention.”

Passing down the family tradition of open conversations about health 
 

Amanda and her husband are now cancer-free, diligent about checkups and looking forward to a healthy future. Both of them are advocates for helping families be more comfortable with open discussions of cancer. “It’s less scary when you are more prepared,” Amanda said.

Amanda and Charley approach this discussion with their kids like Amanda’s parents did: openly and with care. “My oldest helped shave my husband’s head during chemo,” she said. “I remember seeing my mom like that, too.”

Levin’s memories of the COVID-19 pandemic helped him understand the health precautions his family had to take while his mom and dad were healing, but they also caused him some worry. “When the world finally opened up again after the pandemic, he would always ask, ‘Is it safe?’ So when Charley had cancer, Levin’s main concern was catching his sickness, which we reassured him wouldn't happen.” 

“We had to get creative with putting things in terms he would understand, like how getting the flu shot to protect yourself from flu is like how I was getting surgery to protect myself from sickness.” That year, Levin loved watching the movie Space Jam with Michael Jordan. “He was very excited to notice that a lot of basketball players were bald like his dad,” Amanda said.

Now, when talking to her sons about their family history, Amanda keeps it age-appropriate. “Theo is now 4; he still doesn’t quite understand it. But Levin is 7. We explained that sicknesses can happen in a family like ours. He knows his Mimi had breast cancer and his mama. When I went through my surgery, I made sure to explain to them that I’m not doing this because I’m sick right now. I’m doing this because I want to stay healthy and protect myself for my life with you guys.”
 

References

1.    BRCA gene changes: Cancer risk and genetic testing. National Cancer Institute. July 19, 2024. Accessed October 31, 2024.