Between treatment delays and clinical trial restrictions, patients are experiencing increased anxiety and loneliness. Here’s how they're coping.

By Kaelyn Forde
Oct 05, 2020 @ 11:30 am
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Credit: Erin Glover/InStyle.com/Getty Images/Stocksy

If Maria D’Alleva had to lose both of her breasts, she at least wanted to have control over how it happened. D’Alleva was diagnosed with invasive ductal carcinoma in February of this past year. Her medical team suggested she have a bilateral mastectomy to remove her affected left breast and prophylactically remove her right breast. D’Alleva, 44, says she planned to undergo reconstructive surgery at the same time so she could leave the hospital with a body that looked like hers, something she felt would help her heal. 

Then COVID-19 hit, and her April surgery was cancelled. D’Alleva, who works as a manager at a national answering service and lives in Eagleville, Pennsylvania, was told that while she could still undergo a single mastectomy, limits on elective surgeries meant she wouldn’t be able to have her other breast removed or undergo reconstructive surgery at the same time. Her family wanted her to remove the cancer as quickly as possible; D’Alleva didn’t want to be left with one breast for an indefinite period of time.

“My family was very intent on me getting it done and just, ‘Hey, forget it. You just get the left breast cut off, don't worry about it, it’ll be flat, who cares, you'll deal with it later.’ That's fine for them to say because they're not going through it,” D'Alleva tells InStyle. “To look in the mirror and see one side has been cut off and the other side is still there, for me, that wouldn't have worked. I wouldn't have been able to manage that. I had to wait — for my own mental and emotional health — just to be able to accept that change.” 

Maria D'Alleva
| Credit: Courtesy

Across the country, people battling breast cancer during the pandemic have faced similarly tough choices. COVID-19 caused widespread disruptions in breast cancer care, according to a report from Breastcancer.org, and the organization’s survey of more than 600 patients found delays in everything from clinical visits to reconstructive surgeries to surveillance imaging and routine mammograms. “The COVID-19 pandemic has affected virtually every aspect of breast cancer care in some way,” Dr. Marisa Weiss, Breastcancer.org’s chief medical officer, tells InStyle

The pandemic has also exacerbated long-standing disparities in care for communities of color. Black people are dying from COVID-19 at twice the rate of white and Asian people, according to an APM Research Lab analysis, and those disparities exist for breast cancer, too. Black women are 40% more likely to die than white women from breast cancer even though they are diagnosed at similar rates, according to the CDC. And experts worry that these disparities — caused in part by unequal access to quality healthcare, racial discrimination and poverty — will continue to widen amid the ongoing fallout from the pandemic, especially with an unequal economic recovery that has seen women of color increasingly left behind. 

COVID-19 has also taken a psychological toll on breast cancer patients: 80% of patients surveyed said the pandemic had increased their anxiety about their cancer. And amid headlines about a second wave of COVID and the swiftness with which the virus spreads indoors, patients continue to grapple with how to safely go about their daily lives with vulnerable  immune systems — all while battling the loneliness, uncertainty, and isolation that can come with cancer treatment amid a global crisis. 

'Everything was shaken up by COVID'

D’Alleva’s medical team okayed her decision to postpone her surgery until June. In the meantime, she took tamoxifen, a hormonal therapy drug designed to keep the cancer from growing. But her weakened immune system made the pandemic even more isolating — her family urged her not to leave her apartment at all. D’Alleva lives alone with her two dogs, so even hitting the elevator button in her building seemed risky. 

“Walking out of my door, who knows what I’m going to get between now and when I walk over to the trash chute?” she says. “You have no idea what other people have, what you're dealing with, what's going on and what you could catch. And with COVID, as we heard in the news, people could be running around with it and not have any symptoms.” 

Scientists are still studying whether cancer patients are at a higher risk of dying from COVID-19, but many of the risk factors for breast cancer also put people at higher risk of complications from COVID-19, explains Dr. Jill Dietz, the president of the American Society of Breast Surgeons. 

Dr. Jill Dietz
| Credit: Courtesy

“Obesity is a big risk for cancer, for example, and it’s a big risk for having a complication with COVID,” Dietz tells InStyle. “Diabetes, smoking — all those things that are risk factors for breast cancer put you at a risk for having a bad outcome with COVID as well.”  Cancer patients may also need to make frequent trips to hospitals or healthcare centers where they could catch the virus, and treatments that weaken their immune systems could also put them at higher risk for a bad outcome with COVID-19, Dietz adds.  

D’Alleva tried to balance those very real concerns with the very real need for human connection. She got through the lockdown with daily texts and calls from friends and family, as well as meal drop-offs. Her normal Zen routine of wandering Home Goods and treating herself to Mexican food on the weekends was disrupted, so “I needed to make light of my situation and do whatever else to cope,” she says, explaining that cuddling her dogs, binging on sitcoms and throwing herself into her work helped her pass the time. An unexpected silver lining was that many friends and family were working from home and could cook, chat or be there for support, D’Alleva says. 

But it isn’t just people who were already diagnosed with breast cancer that have been affected by COVID-caused delays in care. “Routine cancer screenings were also postponed in many areas for people at average risk who did not have symptoms from mid-March through early June,” Weiss explains. That means that the pandemic may cause some people to be diagnosed with breast cancer at a later stage, making it potentially deadlier and more difficult to treat. 

“Just because there's a pandemic doesn't change the fact that a certain number of women are going to develop breast cancer, and that is going to be a constant,” Dietz explains. “So the fact that screening mammography numbers have dropped off so radically and continue to be below our normal rate basically translates into later diagnosis of disease and worse outcomes … We’re going to see the effects of not screening play out in the future with delayed diagnoses and increased death rates.”

Tori Geib knows what it’s like to be diagnosed when breast cancer has already spread. Geib was diagnosed with stage 4 cancer the week of her 30th birthday in 2016, and told she had a 10 percent chance of living to the age of 40. She was forced to quit the job she loved and move in with her parents in Bellefontaine, Ohio. “Because I’ve been in treatment so long and this is my fourth year in active treatment for metastatic breast cancer, my pattern and my routine are pretty well down,” Geib, 34, tells InStyle. “So I was a little taken aback as far as how much everything was shaken up by COVID.” 

Geib still drives an hour each way to undergo treatment in Columbus. But now, if a family member or friend drives her there, they have to wait in the parking lot, sometimes for up to five hours without access to a bathroom. “For me, there’s a whole new anxiety and guilt factor. It’s a whole new type of ask,” Geib says. “It’s emotionally taxing on everybody.” 

Hospital safety protocols also mean Geib’s mom, who is her support person and a nurse, can’t be there while Geib receives vital information about her cancer, either. Instead, Geib scribbles as many notes as she can while trying to keep up with her care plan. In emergencies, she is also alone: when she went into anaphylactic shock in April and lost consciousness after taking a new medication, she woke up to see only nurses surrounding her. 

Geib was also alone in June when she received the worst news yet. “We ended up finding out that my cancer has gone to my brain. I had to hear that news by myself,” she remembers. “I had to make the decision to do brain radiation alone. I didn’t have my support person there to talk it through or help me with those decisions.” 

Tori Geib
| Credit: Courtesy

She has also been isolated from her metastatic breast cancer support group, which used to meet for Mellow Mushroom pizza once a month. “We haven’t met since the beginning of COVID, and we probably won’t meet again until we have a vaccine, just because of the safety issues,” she says. “The sad part is we’ve actually lost four members of that group during COVID, and there’s only three of us left. We weren’t able to attend their funerals, because the funerals were limited to family only.”

The pandemic has also shut Geib out of clinical trials that could have potentially helped her. “You always had this hope, with all these clinical trials happening, that there would maybe be something in the works that you might be able to go to,” Geib says. “Logically, my next move when I had progression a couple months ago would be to go to a clinical trial. However, the trials that best fit me weren’t available because of COVID.” 

'I feel like I'm running out of time'

COVID-19 has had an impact on the whole spectrum of women’s healthcare, including  fertility treatments. Amy Switzer tested positive for BRCA1, a gene mutation that makes developing breast and ovarian cancer more likely, in 2016. Her doctors told her she should undergo preventative surgeries to remove her breasts, ovaries and fallopian tubes after she is done bearing children and before turning 40 to reduce her cancer risk. But the 37-year-old wants to have a second child first. Switzer was in the midst of IVF treatments when the pandemic hit in March, which put everything on hold. 

“I couldn't do my cycling for fertility, so I was shut down for three months, and that just pushed back everything, including my chance to take care of my health,” Switzer tells InStyle. She resumed IVF over the summer, but it wasn’t successful, and so she’s now trying again. “I feel like I'm running out of time. The more and more my fertility is not successful, it keeps pushing back my plans of doing the preventative surgeries, which puts me at more and more of a higher risk.” 

Amy Switzer
| Credit: Courtesy

Switzer, who works as a designer in the home textiles industry in Dallas, has continued to undergo routine screenings for cancer, including mammograms, MRIs and trasvaginal ultrasounds, opting for smaller facilities where she won’t have to be around as many people. And while the pandemic isn’t over, Switzer is determined not to let it jeopardize her plans. “I need to keep moving forward,” Switzer says. I can't have the crutch of COVID-19 hanging over me with everything else that I have to worry about.”  

Moving Forward

D’Alleva underwent her bilateral mastectomy in June, but was told it was still too risky to have autologous reconstruction, which would use tissue from another part of her body to reconstruct her breasts. Although breast implants weren’t her first choice, she decided to move forward and got them in September. 

As she recovers from that surgery, she hopes that people will wear their masks and practice social distancing to protect everyone, including patients like her. “No one knows by looking at me that I have breast cancer,” D’Alleva says. “You have to be the type of individual who says, ‘You know what, regardless of what my political affiliation is, I'm going to do this because I know that I will be helping someone else by putting on my mask. By keeping myself safe, I am keeping them safe.’ That’s what it boils down to.”

And with most of the country reopening, Weiss encourages people to make that doctor’s  appointment they have been putting off. “It’s important for people to know that healthcare facilities have put safety protocols in place and, in many parts of the country, have resumed reconstruction surgeries and routine cancer screenings,” she says. “So if you are overdue for your mammogram, reschedule it as soon as it is safe and accessible in your area.” 

Geib agrees, adding it’s a myth that young women don’t get breast cancer. “You think you can put your healthcare off or that you can skip that pap smear or mammogram just for one year and you’ll be fine,” Geib says. “But when it comes down to it, we have these things in place because we know that they work. We know that taking care of your health seriously now will mean hopefully later on you can live a healthy and successful life.”