Health and Wellness Body Breast Cancer Is Still Going Undiagnosed Because of the Pandemic A year ago, three survivors brought us along on their journey. See where they are today, and why early screenings are more urgent than ever. By Kaelyn Forde Kaelyn Forde Kaelyn Forde is a freelance reporter and producer covering news, politics, motherhood, fertility, and health. Her reporting has been published by InStyle, Glamour, Allure, Cosmopolitan and BBC Magazine, among others. InStyle's editorial guidelines Published on September 28, 2021 @ 01:55PM Pin Share Tweet Email Photo: Stocksy A year and a half into the coronavirus pandemic and her battle with breast cancer, Rebecca Weaver is living in a state of what she calls "suspended optimism." In early September, she received her third dose of the Pfizer-BioNTech vaccine and underwent reconstructive surgery on both of her breasts. Her 5- and 8-year-old daughters are back at school with masks on. She now ventures to the store occasionally after spending an entire year either at home or in the hospital. "I finally feel now like I might start to be able to adjust to that new normal that people have told me about — figuring out how to live in my body, and how my clothes are going to fit now," Weaver tells InStyle. "I'm not nearly as vulnerable to COVID as I was a year ago, so that part feels a little less terrifying when I walk out the door." But as the Delta variant causes a surge in cases near her home outside of Seattle, Washington, Weaver is no longer making plans to see friends. Courtesy Rebecca Weaver. Courtesy "With the Delta variant and my kids unvaccinated, I have remained very cautious when it comes to all of that stuff," Weaver says. Both cancer and COVID have taught her to "live in the present and with a much higher degree of uncertainty than I ever did before." For Weaver, breast cancer and the pandemic are inextricably linked. She was diagnosed with stage 2 hormone-positive breast cancer on January 6, 2020, after finding a lump in her breast at home. The diagnosis, received just before her 41st birthday, stunned her. But just as she and her family were wrapping their minds around her treatment plan, the first known cases of COVID-19 in the US were reported in Washington state. So as she received chemotherapy throughout the winter of 2020, the nurses at Swedish Cancer Institute became experts at finding Weaver a chair in the infusion room with a scenic view of the parking lot. Weaver popped in her earbuds, gazed out the window, and dialed her husband Sean's cell. From across the parking lot came his familiar "Hey, babe" and a reassuring wave. "Every single treatment I had, he rearranged his schedule to have those days off," Weaver says. "We would talk on the phone as he sat in his car in the parking lot." It was Sean's way of being with Rebecca even as his job as an emergency room physician at Providence Regional Medical Center — where the first known COVID-19 patient in the US was treated — kept him from living with her and their young daughters. Courtesy "We realized after my second round of chemo treatment that my husband was going to have to move out," Weaver remembers. "He was being exposed on a daily basis to this really unknown virus, and I was about as vulnerable as a person can be by that point in time. We have some friends who had an apartment in their basement they let him use for five months. And so it was just me and our young girls." Weaver balanced helping her older daughter with Zoom first grade and caring for her toddler with the brutal fatigue of chemotherapy. And when she went in for chemo, her sister — whom she calls her "angel on earth" — cared for Weaver's girls. Otherwise, she was on her own. It was too risky to have anyone come into her house when her immune system was so weak and the pandemic was raging across the country. "In the very beginning when you're diagnosed, so many people will tell you, 'Be ready to let other people help. You need to ask for help and lean on others for support,'" Weaver says. "I was so ready for that, and then all of a sudden, it was all taken away. So we did what we could." The family ate dinner together through the screen door as Sean sat outside on the deck. They had Zoom story time at night. And then, a few weeks after Rebecca's final chemotherapy treatment in July, Sean came home. "We just hugged and cried and hugged some more because that is what we had missed the whole time." Three weeks later, Weaver underwent a double mastectomy — and once again, she was alone in the hospital. As she lay on the operating table, her oncology surgeon reached out and grasped her hand. "She held my hand until I fell asleep with the anesthesia. I don't think I'll ever forget that. It was such a beautiful, beautiful moment," she remembers. When she woke up from surgery, she wasn't prepared for how her chest would look — "concave," she says, "it was a shock to the system." But she often thinks about what would have happened if she hadn't found that lump at all — and had her routine appointments pushed back by the pandemic. Millions of Missed Screenings Weaver is one of the hundreds of thousands of people diagnosed with breast cancer during the Covid-19 crisis who have had to battle one aggressive disease while living with the fear of contracting another. And as the pandemic drags on, more women — and men — will join that battle. The Centers for Disease Control and Prevention estimate that each year, about 255,000 cases of breast cancer are diagnosed in women and about 2,300 are diagnosed in men. But in addition to making treatment harder and more isolating for patients who have been diagnosed with breast cancer already, delays in routine screenings and preventative care — and people's hesitancy to seek them out — could mean breast cancer will be diagnosed at a later, more difficult-to-treat stage in new patients, says Jill Dietz, M.D., a breast surgeon for more than 20 years and the chief transformation officer and director for breast growth and strategy for the Allegheny Health Network Cancer Institute in Pennsylvania. "It's not like breast cancer stops happening in a pandemic. It's definitely happening at the same rate. But it's just that we're not finding it early," Dietz tells InStyle. "Screening mammography plummeted in March and April of 2020 and then it started to come back up in May and June, but most studies show that it never really achieved pre-pandemic levels." That persistent gap is why Dietz views Breast Cancer Awareness Month as more important than ever this year "because we haven't seen a return to normal screening. I think people are afraid. We have to get the word out that it's safe," she says. Everything You Need to Know Before Your First Mammogram The pandemic also exacerbated existing racial and socioeconomic disparities in healthcare across the board, and those disparities were already significant in breast cancer care. While white and Black women are diagnosed with breast cancer at about the same rate, Black women have a 40% higher death rate from the disease, according to the CDC. Dietz says women in some of the groups hit hardest by Covid-19, including those from Black and Latino communities and from lower socioeconomic backgrounds, "are also the least likely to get screened," which means the pandemic "is mostly affecting the most vulnerable populations when it comes to access, when it comes to treatment and when it comes to outcomes." In fact, a study published in the journal JAMA Oncology in April estimated there were 3.9 million fewer breast cancer screenings in 2020 than in 2019. And that worries healthcare providers because diagnosing breast cancer early has a huge impact on treatment plans. Dietz says clinicians also feel the impact of later-stage diagnoses. "When we see disease that could have been caught earlier, it is hard," Dietz says. "It's definitely hard when patients come in with advanced disease when we know there is a way to catch breast cancer early and it's very simple." Some physicians also had to make tough decisions in the early days of the pandemic that weighed the risks of postponing surgeries or in-hospital treatments with the risk of a patient contracting COVID. "It put a lot of added stress on clinicians," Dietz says. Dietz explains that because breast cancer is generally slow-growing and many patients respond well to treatment, we might not see the effects of the lack of screening during the pandemic on mortality figures for a decade. But catching the disease at a later stage definitely has an impact. For example, local-stage breast cancer — also known as stage 1 — has a five-year relative survival rate of 99%, according to data from the American Cancer Society. Regional-stage breast cancer — also known as stage 2 or 3 — has a survival rate of 86%. But when breast cancer is diagnosed at stage 4 — also known as metastatic disease — the survival rate plummets to 27%. 'I've really made it a priority to do things that I want to do.' Tori Geib was diagnosed with stage 4 breast cancer just before her 30th birthday in 2016. She told InStyle last year that some of the clinical trials she was hoping to join had been put on hold indefinitely, leading her to feel she was running out of time. She was given a 10% chance of living until the age of 40 when she was first diagnosed. Now 35, Geib has gone through five more treatments over the past year that did not work, and at one point was told by her healthcare providers she should consider hospice care. "It's been very scary at times. It's been very intense and definitely a lot of ups and downs," Geib tells InStyle. Courtesy Tori Geib. Courtesy As pandemic restrictions eased, Geib was finally able to start a clinical trial in February at the Cleveland Clinic, three hours away from her home in Bellefontaine, Ohio. She and her family came up with the money to pay for gas, hotels, and meals out of pocket. Shortly after, she fractured her femur and a bone in her lumbar spine and underwent two major surgeries. The clinical trial drug didn't end up working for her, and she came off of it in late March and started on a new chemotherapy medication. Geib's cancer, which has also progressed to her lungs, landed her on a ventilator in August. "Any time you have to go into the hospital or spend time in the hospital, it's very scary," she says. "Luckily, I didn't get COVID when I was there." The experience made her view her time differently; she decided to find a new balance between her family and friends and the advocacy work she loves. "Since having that near-death experience, I've really made it a priority to do things that I want to do, and not things that people expect me to do," she says. "Sometimes when you're cheering for everybody else, you kind of forget to cheer for yourself, too, or let yourself have your moments, and I needed to do that." One of those moments was competing as a chef in her local county fair, where she earned first place for her semi-homemade cake and three more ribbons for her quick bread, brownies, and apple pie. "I was so excited because I was judged and the bar wasn't lowered for me because I have cancer," Geib, who used to work as a hospital catering chef, says. "This isn't about the struggle I've been through, it's about how good I am at my craft. It's something that I don't want cancer to take over." All told, Geib has been on 13 different drugs, undergone 17 surgeries and endured eight rounds of radiation since being diagnosed with metastatic breast cancer. She has made it her mission to remind people that young women can — and do — get breast cancer. "It's not just a woman's disease or your grandmother's disease. It affects everyone, and we need to stop pretending that this is an easy cancer," she says. Earlier this year, she was given a new platform to spread that message as a member of the Susan G. Komen Foundation's public policy advisory board. Battling stage 4 breast cancer during the pandemic has also taught her some important lessons, like "learning to slow down, learning to let people in and let people take care of me the way that I have always wanted to take care of everybody else," Geib says. "It's been a humbling experience." 'What will you do with the time you do have?' For Maria D'Alleva, 2021 has been a year of finding a new normal. D'Alleva was diagnosed with invasive ductal carcinoma just as the COVID pandemic hit near her hometown of Eagleville, Pennsylvania in February 2020. She underwent a double mastectomy in June 2020, and in September, she had her reconstructive surgery, something she told InStyle was crucial to her own healing process. A year later, she is happy with how her breasts look and feel — and says her implants are more even than her natural breasts were. "These are new, but they're a part of me and they're even better than the other ones," D'Alleva tells InStyle. "I know it's ridiculous to say that because who wants to have breast cancer — nobody does — but here we are. These are more balanced. I just feel like I am more even." Courtesy Maria D'Alleva. Courtesy After receiving her Covid-19 vaccine in the spring, D'Alleva feels more comfortable venturing out — she still wears her mask — and has gone back to her job as a manager at a national answering service in person, something she appreciates. "I really missed the office environment," she says, and seeing her colleagues again has been part of getting back to normal after months of isolation as she awaited surgery. Other than taking Tamoxifen once a day and keeping up with her regular check-ups, D'Alleva is done with treatment — and that's freeing. She urges people who are at the start of the journey to "be true to yourself. It's wonderful to have the input of family and friends, and of course, physicians," D'Alleva says. "But at the end of the day, only you know what will give you peace of mind. Honor that. It will go a long way in helping you accept your new normal." Weaver is looking forward to finding that new normal herself. She's now balancing taking care of her health and family with her work at the company she founded, HRuprise, a platform that gives people access to independent workplace coaches. After so much uncertainty, Weaver feels she can finally pause and reflect on how battling breast cancer and living through a pandemic has changed her body — and her mind. "I will never be able to separate my pandemic experience from my cancer experience," Weaver, now 42, says. "Confronting my own mortality at this age, to me, feels like a rather aggressive, in-my-face reminder that tomorrow is never promised. I try to not allow fear to rule my life, but to use it as a more positive reminder. You don't know what will happen, you don't truly know how much time you have left, so now what? What will you do with the time you do have? That has fundamentally changed things for me."