How the pandemic has changed breast cancer treatment for women: 'I went to everything alone'
For Jenny Beaupre, Feb. 20, 2020, started out as a banner day: It was her fourth anniversary with her husband, and she posted a series of joyous wedding photos on Instagram, noting, “Still the best day of my life!” Plus, as a teacher in the midst of maternity leave, she got to spend the day with her bubbly infant twins at their home in a suburb of Chicago, where her family had just moved from Los Angeles.
But then came the call that upended not only the day but Beaupre’s life. It came from her doctor, who was following up on a biopsy she’d recently had on a breast lump, which she had assumed was a clogged milk duct.
“He told me bluntly, ‘You have cancer,’ and I asked if it had spread to my lymph nodes, and he said yes,” Beaupre, 41, who had just recently stopped breastfeeding the twins, tells Yahoo Life. She was diagnosed with stage III triple-negative breast cancer — a particularly aggressive and difficult-to-treat form — and was quickly pulled into the terrifying whirlwind of more tests, lots of waiting, tough decisions and, finally, treatment.
But her ensuing rounds of chemo — followed by a single mastectomy and, eventually, radiation — would almost immediately become intertwined with another struggle: that of COVID-19.
“That was kind of the start of the pandemic,” Beaupre recalls. “It happened at the same time — right about the time when panic was happening around the world.” That panic, and the resulting now familiar responses — lockdown, social distancing, stepped-up safety protocol in every aspect of life — would vastly affect how Beaupre would receive her treatments.
For starters, there were solo doctor visits, chemo infusions — even surgery. “I went to everything alone,” she says.
Going through oft-scary, confusing treatments and follow-up appointments without a spouse or relative or friend to lean on has been one of the biggest, most difficult ways that women navigating breast cancer treatment over the past six months have felt the COVID influence.
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“I do think it’s lonelier for people now,” Dr. Mary Jane Massie, a psychiatrist specializing in treating breast cancer patients at Memorial Sloan Kettering Cancer Center in New York City, tells Yahoo Life. “And the loneliness factor, I think, has made this really very hard. It was hard enough in good times.”
In honor of Breast Cancer Awareness Month, October, Yahoo Life spoke with patients and doctors to learn how the already upsetting experience of breast cancer has been affected by the coronavirus pandemic. And the examples, though overwhelmingly related to feeling isolated, went far beyond that too.
“I think that if somebody had cancer and was really worried, then you throw more worry on top of it, it’s been awful for people. ‘How will my kids get educated?’ ‘Will I get fired?’ ‘Will my husband become unemployed?’” Massie says. “Then all the worries about health insurance. A young woman who works and has kids, for example, now must figure out how she’s going to work from home, deal with Zoom school from home, and get her cancer treatments.” Further, says Massie, who has moved all of her sessions to virtual platforms, even that can create tension for some of her clients who live in small spaces with big families and no privacy.
“To throw on top of all that the worries about cancer,” she says, “just makes it a lot worse.”
“They worry that getting treatment is too risky”
From a physician’s perspective, impacts on breast cancer treatments — and all cancer treatments, for that matter — have been worrisome. In response, a consortium of 17 U.S. cancer centers, led by the O’Neal Comprehensive Cancer Center at the University of Alabama at Birmingham (UAB), has formed a sort of think tank on the matter. Those involved are looking at how the pandemic may have kept patients from receiving necessary screenings and procedures, resulting in late-stage diagnosis and death, as well as how delaying cancer screenings, clinical trials and testing during the pandemic could roll back significant gains in the field.
“This initiative is going to help us better identify how to prevent cancers and have patients survive their diagnosis, learn about the patients’ hardships, and implement strategies for the future,” explains Dr. Erica Stringer-Reasor, a UAB professor of hematology and oncology and breast disease expert at O’Neal, “because this may not be the last health crisis that we see.”
“People are fearful and are concerned that maybe they can’t or shouldn’t get treatment ... they worry that getting treatment is too risky,” adds Dr. Laura Esserman, director of the University of California San Francisco Carol Franc Buck Breast Care Center and head of the pioneering Wisdom Study trial to help personalize breast cancer screenings. “But if you look at countries that have experienced this before [such as with SARS], they did not shut down their cancer treatments, and people who had critical illnesses continued to get care. If you take appropriate precautions, it’s very safe to get care.” She adds, “Your chance of dying of COVID is 100 to 1,000 times less than your chance of dying of cancer if you don’t get treatment.”
Further, Esserman urges patients to not allow the pandemic to pressure them into making rushed decisions. “Cancer is only an emergency because you know about it, so you have to take your time,” she says. “You want to be careful not to over-treat or under-treat. While many are feeling the sense of urgency to make a decision, it’s more important to get the treatment right.”
“I definitely feel like I made choices a lot faster”
But that’s easier said than done for many who are feeling more pressure than usual during this uncertain time. It certainly was for Michelle (who asked that her last name not be used), a Massachusetts-based therapist who was initially diagnosed with DCIS, or stage 0, breast cancer in December. First came periods of excruciating waiting — a staple for anyone dealing with a new cancer diagnosis, but one that was even more drawn out for Michelle, 46, who first had to put off her lumpectomy to be hospitalized for colitis treatment, only to have it moved again, from a March date, because of COVID precautions.
She finally had her lumpectomy in June, which revealed to doctors that her cancer was invasive. That led to another biopsy and recommendations for more. But instead, and pretty quickly, Michelle just decided to schedule a double mastectomy. “I wanted to get things done,” she says, adding that she chose to have flat closure, rather than breast reconstruction, in order to not draw out surgeries any longer.
For her mastectomy, she spent the night in the hospital alone, just down the hall from the COVID-19 wing, masked the entire time. “It was lonely,” she recalls, adding that she believes the pandemic altered how she might have otherwise dealt with her diagnosis. “I definitely feel like I made choices a lot faster. Like, they wanted to do the ancillary biopsy, but I was like, ‘This is the third surgery, let’s just do this mastectomy now.’ I really felt this pressure to stay out of the hospital as much as possible. ... But I made that decision in, like, eight days. ... I wish I’d had a little more time to process it.”
Also incredibly difficult has been the forced isolation of COVID-19 — especially after having gone through a recent breakup — as she continues with chemo and is looking at radiation treatments in the near future. There’s a great cancer-support center in her town, but it closed its doors and moved online. “Those points of nervous-system connection are gone,” she laments. “Also, with my friends, I feel like I need more support than ever, and I see them really struggling. It’s hard to reach out knowing other people are struggling with the pandemic.”
Now that she’s started with occupational therapy, to regain some movement that’s been constricted by her surgery, Michelle has been thinking a lot about another struggle — the absence of positive physical touch.
“I was always somebody who got a lot of bodywork, I really hold my emotions in my body ... and my body has been under such an onslaught,” she says. “That, for me, has been really hard — to have my body feel like someplace I can’t go for respite, or get relief from.”
Camille Lewis, 47, has had a similar longing. Although the 47-year-old Colorado nanny and mother of two had just finished her cancer treatment — chemo, surgery and radiation — as the pandemic hit, the COVID-19 outbreak did cancel her much-anticipated OT and PT visits. But because she had an “extremely aggressive” triple-negative diagnosis, she must still go to oncologist visits every two to three months — which is fear-inducing, considering how the treatments have compromised her immune system, to the point of her having to leave her previous job in a warehouse.
“My oncologist said, ‘You can’t work there anymore, you are high-risk, just got radiated, you have a compromised immune system,” says Lewis, who agreed, and left. Lewis says she was uninsured but received her care through Medicaid; she eventually found her new childcare position.
Still, for Lewis, going through cancer has had the unexpectedly helpful effect of putting COVID-19 into perspective.
“With the pandemic part, it did not faze me at all,” she says. “I just got out of an insane cancer battle. I thought I was going to die, anyway.”
“It was lonely, not being able to hug somebody”
Ranking worries is a completely personal affair. Says Beaupre, “I’m more paranoid about the pandemic than I am about my cancer and what’s happening with me, just because I know I’m being taken good care of ... and receiving a good course of treatment. But with the pandemic,” she says, “there doesn’t seem like there’s any end.” That’s forced her to not return to her job as an elementary school teacher, bringing added stress over loss of salary (her husband, an engineer, is still employed). And it’s affecting how she is able to parent her twins.
“I can’t go out and do the things I normally would,” she says. “I want to go to the pumpkin patch, I want to go on hayrides. ... But it’s made me paranoid about germs.”
Marisa Davidson, 37, of New Jersey, can relate. After her DCIS diagnosis, she tested positive for the ATM gene mutation, which means an increased risk for breast cancer; in January, she had a double mastectomy. Then came breast-reconstruction surgery and chemo, both since March 30, right when the pandemic was raging through the Northeast. She’s also a mom of three: a 2-year-old and 7-year-old twins.
“It was actually really good having kids because I was so distracted from chemo by it, but of course I felt like shit. ... Thank god [my husband, a special-ed teacher] was home during it all,” Davidson, a real estate agent, says. “We were remote teaching them while I’m lying on the couch. ... One time, the kids asked me if I had coronavirus.” She worked hard to keep her breast cancer diagnosis from them — even using a pricey cold-cap system in an attempt to not lose her hair during chemo, an imperfect process that required capping for one hour before chemo and four hours after. “We were capping just driving around in the car, it was horrible,” she recalls.
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But the biggest struggle? Again: feeling alone. “The hardest part was not having the support of people. I could cry thinking about it. I had so much support with the [pre-pandemic] mastectomy,” she says, her voice breaking. “I’m a Girl Scout leader, and the other moms brought me meals and stuff.” During chemo, she says, such visits were out, as she “took her chances” only with her mother and mother-in-law, who helped with the kids.
“It was lonely, not being able to hug somebody — not even the people at chemo. I wanted to hug the nurse at the end,” she says. “That physical support... Just not having that was really big.”
Massie says she’s heard this over and over from her patients at Sloan — from women who, in the past, would have asked a friend to drive them from the suburbs into the city for their appointments. “But now,” she says, “they say no because their standards about COVID are ‘a lot higher than yours.’ They say, ‘Frankly, I’m scared of you, and I can’t drive you in,’ and that is so painful.”
Germaine Clark of California, 51, is a single mother of three grown children, including her youngest, a 17-year-old with autism. Following her 2019 diagnosis of stage III breast cancer, she underwent a double mastectomy and several rounds of chemo that ended in September. She is now about to start radiation. As a front-desk employee at her local hospital who was about to start chemo just as the pandemic took hold, Clark’s doctor recommended she take a leave to avoid exposure to germs; she did, cutting her income down first to 65 percent and eventually 50 percent of her usual salary.
“Before my diagnosis I was pretty much on top of things with my son — IEPs, extensive therapy since he was 6 years old, attending social-skills class for autistic kids, medications. When he started high school, he had a lot of issues being bullied, so I’d take off work a lot to make sure I can attend meetings and appointments. When it came to me, I would put off my doctor appointments, reschedule them, and I missed my mammogram [in 2018].”
Last year, Clark’s doctor called her with a reminder, and her screening showed a mass. “It was a complete shock to me,” she recalls, adding that, throughout the pandemic and her treatment, she has struggled to focus on herself rather than her family members. “I never took self-care time for me before.”
She has also, like the other women interviewed for this story, felt a profound sense of isolation. Before the spring, she says, a supportive aunt would accompany her to all her appointments. “She’d ask questions, hold my hand. And then once COVID hit, I didn’t have that. I was going in by myself and I’d have these crying spells ... the nurse was like, ‘Are you OK?’ I lie there getting radiation, just crying,” she says. “But I’m trying to stay positive.”
Further testing showed Clark carried the PALB2 gene mutation, which is linked to high risks of breast, pancreatic, ovarian and other cancers. She’s scheduled to undergo a prophylactic hysterectomy next month.
“There are 11 cases of cancer on my dad’s side of the family,” she says. “I’m more worried about dying from cancer [than COVID]. That’s my biggest fear... I don’t even think about the pandemic that much, honestly.”
Read more from Yahoo Life:
Ananda Lewis reveals stage 3 breast cancer diagnosis: ‘I need you to get your mammograms’
What to say — and not to say — when a friend tells you, ‘I have breast cancer’
