The COVID-19 pandemic has affected just about every aspect of life, including screening, diagnosis, treatment, and follow-up care for breast cancer. People who’ve been diagnosed with breast cancer and people who are at high risk for breast cancer have found themselves in a uniquely difficult and sometimes frightening position since the coronavirus crisis began. Many of these people are wondering if it’s safe to go to certain medical appointments or if they should postpone treatments or screening. Other people have had their treatments delayed or changed.
In this Special Report from Breastcancer.org, we have gathered the most important information you need to know about the impact the coronavirus has had on breast cancer care, including why certain treatments can raise the risk of serious COVID-19 complications, what healthcare facilities are doing to minimize your exposure to the virus when seeking medical care, and how to get the best care possible even if your treatment plan changes.
This is a developing story that was last updated on July 29, 2020.
- The first wave: Widespread delays and disruptions in breast cancer care
- Unique risks of COVID-19 for people with breast cancer
- How healthcare is changing to keep people safer
- How has COVID-19 affected breast cancer care?
- How to get the care and support you need during the pandemic
- Is the healthcare system now better prepared for surges in COVID-19 cases?
- How to stay vigilant about your safety
The first wave: Widespread delays and disruptions in breast cancer care
On March 11, 2020, the World Health Organization (WHO) said that COVID-19 had become a pandemic — a disease that has spread across multiple countries. The U.S. declared a national emergency shortly after. As the first shutdowns began and many of us were learning the term “social distancing” for the first time, thousands of Americans received even more troubling news: they were diagnosed with breast cancer.
Nancy Richards, 67, of Barnstable, Mass., was one of those people. She found out in March that she had invasive ductal carcinoma. Because it was her second breast cancer diagnosis, she quickly made up her mind about what to do without having to do much research.
“Since it was right at the beginning of the pandemic, everything was sped up very quickly,” she said. “I went from diagnosis to surgery in 2 weeks.”
On the day of her surgery — a double mastectomy with no reconstruction — Nancy had to go to the hospital alone. No visitors were allowed.
“My husband had to drop me off and pick me up at the curb. Like a parcel. That was a little bit hard,” she said.
To protect her from being exposed to COVID-19, the hospital discharged Nancy right after the surgery, and almost all of her follow-up care took place over the phone.
Like Nancy, Maria D'Alleva, 43, of Eagleville, Pa., also learned she had invasive ductal carcinoma just as the COVID-19 crisis was beginning. Her surgery was delayed from March until early June, and she wasn’t able to have the surgery she originally wanted — a double mastectomy with immediate autologous reconstruction (which uses tissue from another part of the body to create the reconstructed breasts).
During the first couple of months of the pandemic, many hospitals stopped performing breast reconstruction procedures. This was because public health authorities recommended that elective (non-urgent) surgeries be postponed, and breast reconstruction was considered to be elective surgery at the time.
If Maria wanted to have surgery in March, her surgeon told her that she could have only the breast with cancer removed (a single mastectomy) and no reconstruction.
“I didn’t want to be completely flat, wait to recover, then do some kind of reconstruction,” she said. “To avoid putting myself through more procedures and recovery, I opted to wait.”
Because she was diagnosed with hormone-receptor-positive breast cancer, Maria was able to take tamoxifen, a hormonal therapy medicine, to keep the cancer from growing while she waited for surgery. But eventually, she decided to change her original plan and was able to schedule a double mastectomy with immediate reconstruction using tissue expanders in early June. She plans to get breast implants after the tissue expansion process.
“It seemed more prudent to remove the breast cancer rather than continue to wait for the autologous reconstruction,” she said. “These are crazy times.”
As we’ve come to learn, Nancy’s and Maria’s experiences are not uncommon. Across the country, the COVID-19 pandemic has caused delays and disruptions in care for people with breast cancer — whether they are newly diagnosed, in active treatment, in long-term survivorship, or living with metastatic breast cancer — adding extra anxiety and uncertainty to an already challenging journey.
Why did COVID-19 delay breast cancer care?
In March, the Centers for Disease Control and Prevention (CDC), the Centers for Medicare and Medicaid Services (CMS), and local and state governments recommended that healthcare systems delay elective care, meaning surgeries, screenings, and other treatments that are not considered urgent or emergencies. Hospitals began canceling some surgeries and limiting other services to protect people from being exposed to COVID-19 and to save resources such as hospital beds, personal protective equipment (PPE), blood supply, and staff time so they could be used to care for seriously ill patients with COVID-19.
Medical organizations such as the:
- American College of Surgeons
- American Society of Breast Surgeons
- American Society of Clinical Oncology
- American Society of Plastic Surgeons
- American Society for Radiation Oncology
- American College of Radiology
- National Comprehensive Cancer Network
- Society of Breast Imaging
and a newly formed group called the COVID-19 Pandemic Breast Cancer Consortium have all released recommendations to help healthcare providers make decisions about managing and prioritizing the care of people with breast cancer during the pandemic.
“Time will tell whether we made the right decisions in order to try to protect our patients from the virus and take care of the breast cancer,” said Jill Dietz, M.D., FACS, co-founder of the COVID-19 Pandemic Breast Cancer Consortium, president of the American Society of Breast Surgeons, and associate professor of surgery at Case Western Reserve University School of Medicine in Cleveland, Ohio. “Having a diagnosis of breast cancer at any time is very scary, and now it’s especially difficult. I feel so bad for the patients going through breast cancer treatment during the pandemic, and I feel bad for the physicians who were told they can’t practice like they normally practice.”
Doctors are looking at each person’s unique situation and diagnosis when deciding how to best move forward with breast cancer treatment during the pandemic. For example, they are looking at whether a person has a higher risk of becoming seriously ill from a COVID-19 infection due to a weakened immune system from treatments such as chemotherapy or targeted therapy, or because of their age or other health problems.
Healthcare facilities have adopted stricter safety practices to reduce the risk of exposing people to COVID-19. At the same time, many cancer treatment plans have been changed so people don’t have to spend as much time at these facilities. Medical appointments are being spread out to avoid close contact between people, more appointments are being done over the phone or online, and hospital stays after surgery have been shortened. In some cases, fewer in-person visits are required to complete chemotherapy or radiation therapy.
Still, all of the usual treatment options may not always be available to people with breast cancer during the pandemic. In the spring, for example, people may have had to wait weeks or months for certain breast cancer surgeries unless they were diagnosed with an aggressive type of breast cancer. Also, breast imaging was only available for urgent cases, access to new treatments through clinical trials was limited, and fertility-preserving procedures were not available in some places.
Donna-Marie Manasseh, M.D., chief of the division of breast surgery and director of the breast cancer program at Maimonides Medical Center in Brooklyn, NY, said the changes to treatment plans have been stressful for both patients and healthcare providers. But she wants people with breast cancer to know that healthcare providers are carefully considering their decisions, with the goal of providing the best care possible in these circumstances.
“It’s not that the COVID-19 patients became more important than the breast cancer patients,” she said. “We’re making a true, conscious effort to figure out the right things to do for our breast cancer patients — which includes protecting them from COVID-19 and treating their cancer.”
In May, when some areas of the country were seeing a drop in COVID-19 cases, the CDC and other health authorities said that healthcare systems should consider providing elective care again. Surgeries, screenings, and other care that had been put on hold started up again in many parts of the United States during May and June. But by late June and early July, restrictions on elective care started again in new hot spots such as Arizona, Texas, and Florida. As the situation evolves, changes in breast cancer care continue to happen at some hospitals.
Unique risks of COVID-19 for people with breast cancer
Most people infected with the COVID-19 virus will have mild to moderate respiratory symptoms and recover without requiring special treatment or hospitalization. Some will have no symptoms at all.
It’s important to know that being diagnosed with breast cancer doesn’t automatically increase your risk of having serious complications if you do get COVID-19.
But people in treatment for breast cancer may be at higher risk for serious complications from COVID-19 if their treatments have caused them to become immunocompromised (have a weakened immune system) or have lung problems.
The following breast cancer treatments can weaken the immune system:
- all standard chemotherapy drugs, such as Taxol (chemical name: paclitaxel), Taxotere (chemical name: docetaxel), Cytoxan (chemical name: cyclophosphamide), and carboplatin
- certain targeted therapies, such as Ibrance (chemical name: palbociclib), Kisqali (chemical name: ribociclib), Verzenio (chemical name: abemaciclib), and Piqray (chemical name: alpelisib)
Typically, the immune system recovers within a couple of months after you stop receiving chemotherapy or targeted therapy. But your immune system’s recovery time can vary and depends on several factors. If you received those treatments in the past, you aren’t necessarily at higher risk for serious complications from COVID-19. If you’re receiving ongoing treatment with these medicines for metastatic breast cancer, it’s likely that your immune system is weakened.
Some chemotherapy medicines and targeted therapies can also cause lung problems, which could put people at higher risk for COVID-19 complications. Rare but severe lung inflammation has been linked to Ibrance, Kisqali, Verzenio, and the immunotherapy drug Tecentriq (chemical name: atezolizumab).
People with metastatic breast cancer in the lungs also can have lung problems that may get worse if they develop COVID-19.
Some people with breast cancer may have other risk factors for developing serious complications from COVID-19. For example, you are at greater risk if you:
- are age 65 or older
- have chronic obstructive pulmonary disease (COPD)
- have a serious heart condition
- have type 2 diabetes, chronic kidney disease, or sickle cell disease
- are obese
Research on COVID-19 and cancer is very limited, so it’s not clear how COVID-19 may affect people diagnosed with cancer. It’s also not clear how different types of cancer may affect COVID-19 outcomes.
To provide more information, researchers at Vanderbilt University have launched a project called the COVID-19 and Cancer Consortium (CCC19) to track outcomes of adults diagnosed with cancer around the world who have been infected with COVID-19. More than 100 cancer centers and other organizations are participating.
The first report from this project was published in the Lancet on May 28, 2020, and included information on 928 people diagnosed with cancer in Spain, Canada, and the United States who also were diagnosed with COVID-19. Breast cancer was the most common cancer in the group, affecting about 20% of the people. Half the people were older than 66, and 30% were older than 75.
About 13% of the people in the study died, which is about twice the death rate for all people with COVID-19. A higher risk of dying for people with both cancer and COVID-19 was linked to the same risk factors for people without cancer who get COVID-19, including:
- being older
- having a serious underlying health condition, such as diabetes, kidney disease, or heart problems
- being a man
Still, the researchers also found risk factors that were unique to the people diagnosed with cancer, including:
- having active (measurable) or growing cancer
- a poor ECOG performance status score, which measures a person with cancer’s ability to function, care for themselves, and engage in physical activity
Cancer type and cancer treatments did not appear to affect the risk of dying from COVID-19. If you are very concerned about how your specific breast cancer treatments may affect your ability to recover from COVID-19, it makes sense to talk to your doctor and decide on a treatment path that gives both of you peace of mind.
Other small studies that looked specifically at people with breast cancer at hospitals in France and New York City showed similar encouraging findings: most people with breast cancer recovered from COVID-19 if they were infected, and underlying medical conditions seemed to increase the risk of COVID-19 complications more than breast cancer treatments did.
Again, it will take time to perform enough research for scientists to completely understand how a cancer diagnosis affects COVID-19 outcomes.
How healthcare is changing to keep people safe
As anyone who has gone to a clinic or hospital in recent months knows, the pandemic is changing how healthcare is delivered. Healthcare facilities of all types and sizes are taking new steps to keep patients and staff from getting COVID-19.
“We all understand that COVID-19 is not going away, and so what we are all trying to do is adapt to the new normal so that we can limit exposures in the hospital and to healthcare workers,” said Julie Sprunt, M.D., FACS, a breast surgeon with Texas Breast Specialists in Austin, Texas.
Some of the new safety strategies that healthcare facilities have adopted include:
Screening for COVID-19 symptoms
You are asked over the phone before a medical appointment and when you arrive at an appointment whether you have COVID-19 symptoms, have been in close contact to someone with COVID-19, or are waiting on an outstanding COVID-19 test result.
Some facilities ask these questions and take each person’s temperature with a thermal scanner at the door, before they go into the building.
At many healthcare facilities, everyone — patients and staff members — must wear masks all the time.
More use of telemedicine
Many more medical appointments are taking place through telemedicine, either by phone or online video, instead of in person. Medicare, Medicaid, and most private insurers are now covering telehealth visits. Some insurers are waiving co-pays and deductibles for some visits.
Still, it’s important to know that, depending on the regulations in the state where you live, there may be some limitations on seeking a second opinion or setting up ongoing care through telemedicine with a doctor in a different state. You may need to get a written referral from a doctor in your own state, or you may be unable to get a consultation from a doctor who is not licensed to practice in your state.
To prevent people from being too close to each other, healthcare facilities have started adding more time between appointments, having people wait outside or in their cars instead of in waiting rooms, and seating people further apart at infusion centers.
COVID-19 testing before surgery and chemotherapy
Every person who is scheduled for surgery is now required to get tested for COVID-19 beforehand. If you test positive, your surgery will be postponed, even if you don’t have any COVID-19 symptoms. This is to protect the surgical team from being exposed to COVID-19 and to protect you from the risk of having surgical complications because of COVID-19. Some medical centers are also testing people for COVID-19 before they receive chemotherapy treatments. If you test positive for COVID-19, it’s likely that you won’t receive chemotherapy until you’re re-tested and have a negative result. This is to protect you from developing serious COVID-19 complications when chemotherapy has weakened your immune system.
Shorter hospital stays
After surgery, many people are being sent home earlier from the hospital than they would have been in the past. Some people are sent home on the same day they have surgery, while others may spend only 1 or 2 nights in the hospital. This reduces the risk of being exposed to COVID-19 at the hospital. Shorter hospital stays also free up hospital beds and other resources that may be needed for people with COVID-19. It also allows people to spend more of their recovery with their loved ones, since visitors may not be allowed at some hospitals.
Care that surgeons used to provide in person after surgery is often being provided through telemedicine now. For example, surgeons are using video calls to check incisions for signs or symptoms of infection and to coach patients through removing their own surgical drains.
Some people have not been allowed to bring anyone with them when they go into a clinic, hospital, or infusion center, and visitors are sometimes not allowed during hospital stays. Exceptions have been made for people who need a caregiver to go with them to an appointment or procedure because they have cognitive problems or severe symptoms. “Unfortunately, it’s a lot to ask to somebody with breast cancer to not have someone spend the night with them in the hospital,” said Dr. Sprunt.
How has COVID-19 changed breast cancer care?
The pandemic has affected many aspects of breast cancer care in the United States and across the globe. From April 28 through June 7, more than 600 people shared how COVID-19 affected their breast cancer care in an online survey conducted by Breastcancer.org.
From these respondents (83% of whom live in the United States, and 42% of whom were in active treatment), we learned:
- There were delays in many aspects of breast cancer care, including routine clinical visits (32%), surveillance imaging (14%), routine mammograms (11%), reconstruction (10%), radiation therapy (5%), hormonal therapy (5%), mastectomy (5%), and chemotherapy (4%). About 30% reported no delays.
- About 30% reported they chose or considered delaying or changing their own treatment plans due to concerns about contracting COVID-19.
- About 11% reported that COVID-19 affected their desire or ability to get a second opinion.
- Other health conditions linked to a higher risk of complications from COVID-19 were common: 30% reported obesity, 28% had asthma, 15% had a heart condition, and 14% had diabetes.
- About 80% reported feeling some level of anxiety about their care being affected by the pandemic.
- More than half (58%) have used telemedicine, and about 45% found virtual appointments to be helpful and effective.
- About 67% reported being satisfied or very satisfied with the quality of care they were receiving.
- About 26% reported they or a family member had lost their job, and about 42% reported they or a family member had their hours cut.
Our findings are similar to those reported by the American Cancer Society (ACS) from their recent survey of more than 1,200 people diagnosed with a variety of cancer types. In the ACS survey, 87% reported their healthcare was affected in some manner by early May, up from 51% in April. The most common changes for people in active treatment were for in-person cancer provider appointments (57%), imaging services (25%) and surgery (15%).
Almost 1 in 4 people who took the ACS survey reported it was harder to contact healthcare providers. And 1 in 5 people said they were worried about their cancer growing or coming back due to interruptions in their care. Financial problems affecting their ability to pay for care was reported by 46%, and 23% were worried about losing their health insurance.
The following is a more detailed snapshot of some of the ways care changed for people with breast cancer during the first few months of the pandemic.
Breast surgery and reconstructive surgery
Since the pandemic began, many people with breast cancer have experienced changes to their surgical treatment and reconstruction plans at medical centers around the United States.
Certain procedures have been postponed. Mastectomies and lumpectomies have been taking place without much delay for people who urgently need them. For example, some people with more aggressive types of breast cancer, such as triple-negative or HER2-positive breast cancer, have been able schedule a lumpectomy or mastectomy if their doctors determined it was the best treatment plan for them. Some people with other types of breast cancer have been offered the option of having a lumpectomy or mastectomy without much delay. But immediate reconstruction (meaning reconstruction that happens during the same surgery as the mastectomy) may not be available when elective surgeries are being postponed. Still, some hospitals do allow people who meet certain criteria to have immediate reconstruction with a tissue expander or breast implant without delay in these situations.
“Reconstructions were postponed not only to preserve hospital resources, but also to protect patients,” said Robin M. Ciocca, D.O., a breast surgical oncologist at Main Line Health in Wynnewood, Pa. “Having immediate reconstruction can increase the length of the hospital stay, increase the recovery time, and increase the risk of complications from the surgery, all of which we wanted to avoid when there was also a risk of being exposed to COVID-19.”
Treatment before surgery (neoadjuvant treatment) was used when surgeries were delayed. Many people who had to wait weeks or months for a lumpectomy or mastectomy were given either hormonal therapy, chemotherapy, or targeted therapies (depending on their diagnosis) while they waited. Treatment given before surgery — which doctors call neoadjuvant therapy — can slow or stop the growth of the cancer and may shrink some tumors. Neoadjuvant therapies are being used more often than usual in the United States during the pandemic.
In addition to some mastectomies, lumpectomies, and immediate reconstruction surgeries, the following procedures have in many cases been postponed:
- delayed reconstruction with a tissue expander, breast implant, or autologous tissue flap (that takes place sometime after a mastectomy or lumpectomy surgery and after other breast cancer treatments are completed)
- follow-up or corrective breast reconstruction surgeries, such as procedures to swap out tissue expanders for breast implants and procedures to correct asymmetry
- appointments to fill tissue expanders
- preventive (prophylactic) mastectomies to reduce the risk of developing breast cancer in women who have a genetic mutation or other risk factors that put them at high risk for breast cancer
The changes to surgical treatment plans resulted in some people needing more surgeries overall. Dhivya Srinivasa, M.D., a plastic surgeon and academic faculty member at Cedars-Sinai in Los Angeles, said some of her patients needed a second procedure because they weren’t able to get the surgery they wanted at the beginning of the pandemic.
“I have a patient who was getting a single mastectomy and wanted an immediate DIEP flap [autologous] reconstruction. She was a perfect candidate for it. But because her surgery was at the end of March, when we weren’t able to do flap reconstruction, she got an implant then and is getting the DIEP flap as a separate surgery in June,” she said.
Two of her other patients had planned to get a lumpectomy and a breast reduction in one operation, but had to get them as separate operations. “It was unfortunate for the patients who had to have multiple surgeries, but state mandates allowed for no other options,” said Dr. Srinivasa.
Many hospitals started doing elective surgeries without delays in May and June, but this continues to change as the situation evolves.
“Initial restrictions on elective surgeries were appropriately broad in the face of the healthcare crisis presented by the pandemic, but as the months pass and conditions stabilize, I think we must return to the standard of care for our patients,” said Elisabeth Potter, M.D., a plastic surgeon in Austin, Texas, and affiliate faculty member in the department of surgery and perioperative care at the University of Texas at Austin Dell Medical School.
Dr. Potter said that even in areas with spikes in COVID-19 cases, surgeons can work with hospital administrators to advocate for surgeries to take place without delays when that is what’s in the best medical interest of the patient.
Systemic therapy (chemotherapy, hormonal therapy, targeted therapy, immunotherapy)
People who were scheduled to start or to continue receiving chemotherapy, hormonal therapy, immunotherapy, or targeted therapy mostly did so without delays, although there were adjustments to treatment plans.
Appointments with oncologists often took place through telemedicine rather than in person. And oncologists postponed some appointments if they felt it was safer to do so.
Brian Wojciechowski, M.D., a medical oncologist at Riddle, Taylor, and Crozer hospitals in Delaware County, Pa., and Breastcancer.org medical adviser, said that during March and April he was mainly seeing patients in person who had an urgent issue, such as someone who had discovered a new breast lump. “But we delayed in-person visits if we didn’t think delaying would cause harm or risk for the patient,” he said. “For instance, if a patient is a long-term breast cancer survivor whom I usually see for routine follow up every 6 months or so, we could delay that appointment for 3 months.”
Here are other examples of how treatment changed:
- As mentioned above, certain people who had a mastectomy or lumpectomy delayed by weeks or months were given either hormonal therapy, chemotherapy, or targeted therapy before surgery. This approach can prevent the cancer from progressing and can potentially shrink tumors.
- Some cancer centers have been requiring that patients get a COVID-19 test before a chemotherapy treatment. If the person tests positive for COVID-19, in most cases they won’t receive chemotherapy until they are re-tested at a later point and found to be negative. This is to protect them from developing serious complications from a COVID-19 infection because they are immunocompromised due to chemotherapy.
- In some cases, chemotherapy regimens that required a weekly visit to an infusion center were switched to a visit every 3 weeks if it would not change the effectiveness of the treatment.
- People receiving chemotherapy were more often prescribed growth factor medications such as Neulasta (chemical name: pegfilgrastim) to increase their white blood cell count and make them less vulnerable to developing serious complications if they were infected with COVID-19.
- Infusion centers made changes to help keep people safer, such as staggering appointment times, seating people in private infusion rooms or in seats spaced further apart than usual, not allowing visitors, and screening everyone for COVID-19 symptoms before they enter the building. Also, some people started getting routine lab tests (such as blood tests) done at another facility so that visits to the infusion center could be shorter.
- Some cancer centers have set up curbside clinics so people can receive services like blood draws and injections in their car.
- People who were receiving GnRH agonists given by injection such as Zoladex (chemical name: goserelin) or Lupron (chemical name: leuprolide) in some cases switched from receiving them at a clinic to administering them at home, or started receiving a different dose less frequently. Some people reported having trouble getting their injections on time or at the healthcare facilities where they usually received them.
Alexea Gaffney, 39, of Stony Brook, New York, is a breast cancer survivor who was prescribed Zoladex, a hormonal therapy that reduces the risk of hormone-receptor-positive breast cancer coming back (recurring) by shutting down the ovaries. Up until the beginning of the pandemic, she received monthly injections of Zoladex at a local cancer center. In March, she started having trouble getting an appointment to get her injection. The cancer center had less staff than usual because some had been reassigned to take care of COVID-19 patients.
Alexea got her period, which may not have happened had she been able to get her injection on time. At the end of March, she was finally able to get a dose of Zoladex that would last 3 months instead of 1 month, but she experienced side effects she hadn’t experience with her usual dose.
“It’s very stressful to not get a medication on time that you need on a regular basis,” she said. “I was having thoughts like: If I’m having a period, that means I’m making estrogen and progesterone that could feed the growth of cancer.”
Throughout the pandemic, many people diagnosed with breast cancer who were scheduled to start radiation therapy did so with no delays.
“More patients have been eager to use accelerated regimens to finish their radiation treatment as soon as possible and lessen any potential exposures to COVID-19,” said Marisa Weiss, M.D., chief medical officer and founder of Breastcancer.org and director of breast radiation oncology at Lankenau Medical Center in Wynnewood, Pa.
Accelerated (or hypofractionated) radiation therapy regimens involve fewer treatments with higher doses of radiation at each treatment compared to older regimens. In recent years, these accelerated regimens have become a new standard of care for radiation treatment for many people.
For instance, the traditional regimen for whole-breast radiation is one treatment per day, 5 days a week, for 5 to 7 weeks. A standard accelerated regimen for whole-breast radiation involves larger daily doses, 5 days per week, for 3 to 4 weeks. During the COVID-19 pandemic, even shorter whole-breast radiation regimens have been considered.
Partial-breast radiation involves larger daily doses to a smaller area of the breast over a shorter period of time. It can be delivered, for example, twice a day for 5 days, or once a day, 5 days a week, for 1 to 2 weeks.
People who were going to have surgery or chemotherapy before radiation therapy, but had those treatments delayed, ended up having their radiation therapy delayed. Anyone who tested positive for COVID-19 usually had their radiation therapy delayed as well. But for those patients who developed COVID-19 during their radiation therapy, usually their treatment course was completed with extra precautions.
Many appointments with radiation oncologists took place through telemedicine rather than in person, including consultations for new patients and follow-up appointments.
“I have never met my radiation oncologist in person,” said Suzy McKee, of Walnut Creek, Calif., who was diagnosed with invasive ductal carcinoma in November 2019 and had radiation therapy in April 2020. “Even during my radiation appointments, my radiation oncologist appeared on a monitor while I was in the exam room. I only interacted with the technicians.”
Suzy had considered delaying the start of radiation therapy, but her radiation oncologist told her that the delay could keep being extended because of the pandemic. She decided on an accelerated radiation therapy regimen instead. “I felt strongly that I wanted to get it over with,” she said.
“Most patients want to get in and out of the radiation oncology department as quickly as possible. To help with this, we try to minimize the wait times and provide parking next to our entrance. And we offer telemedicine follow-ups as appropriate,” Dr. Weiss said. “We also reassure patients regarding the absence of COVID-19 in our department and all of the safety measures practiced.”
From March through May, some women who were about to start chemotherapy and wanted to preserve their fertility couldn’t get or had a difficult time getting fertility preservation treatments.
Chemotherapy can destroy the eggs in the ovaries, so fertility preservation is an important option for premenopausal women scheduled for chemotherapy who would like to have a biological child in the future. Fertility preservation options include freezing your unfertilized eggs, having your eggs fertilized with sperm and then frozen as embryos, or using other treatments such as ovarian tissue freezing or ovarian suppression.
Fertility clinics were closed for a little over 2 months in many areas with the most COVID-19 cases, such as New York City. In some smaller cities, fertility clinics that were closed to the general population didn’t have the resources to stay open just for the people with cancer who needed fertility preserving treatments. A number of people in those areas chose to travel to a fertility clinic in a bigger city that was still open. Some people faced other barriers to getting fertility preserving treatments.
“I know of a patient who wasn’t able to get an egg-retrieval procedure because she tested positive for COVID-19, even though she had no symptoms,” said Terri Lynn Woodard, M.D., director of oncofertility and associate professor of gynecologic oncology and reproductive medicine at the University of Texas MD Anderson Cancer Center in Houston, Texas. “At our institution, we decided that we would provide fertility preserving treatments to patients that tested positive but had no symptoms. But that situation hasn’t come up for us yet.”
Weslinne Cespedes, 30, of Brooklyn, NY, couldn’t have a fertility preserving procedure because of the timing of her breast cancer diagnosis. After finding out that she had stage III triple-negative breast cancer in March, she initially planned to undergo egg freezing before starting chemotherapy. But the fertility clinics she contacted were closed at the time, and her medical team at the Dubin Breast Center at Mount Sinai didn’t want her to delay chemotherapy.
“It was upsetting, especially because I was engaged and kids have always been in the picture for us,” she said. “We decided that if it is God’s will, he will make a way. Now, we are ensuring my health, and we will know if I’m still fertile when everything is done.”
Weslinne started chemotherapy in April. She is also getting injections of Zoladex as part of her treatment, which may help preserve her fertility. Zoladex causes the ovaries to temporarily shut down, potentially protecting the eggs from the chemotherapy medicine.
If you are having trouble accessing fertility preserving services during the pandemic, contact the Alliance for Fertility Preservation or the The Oncofertility Consortium at Northwestern University. These organizations can help you find fertility clinics that are open.
From March through May, fewer people than usual enrolled in clinical trials for breast cancer treatments. Medical centers chose to limit new enrollment to prevent participants from being exposed to COVID-19 and to preserve PPE and other resources. Also, many healthcare staff members were focusing on clinical trials for COVID-19 treatments. At the same time, many people simply chose not to join trials because of the pandemic.
At medical centers that largely shut down new enrollment in clinical trials, exceptions were made for people with no treatment options besides the one being offered in a trial or if participating in the trial was considered the best available treatment option for the person.
Most clinical trials continued for people who were already enrolled when the pandemic began. Still, many policies and requirements were changed to make participating safer and easier. Participants could have oral medicines sent to them at home rather than having to get them at a medical center. They could also get bloodwork done at a clinic close to their home rather than at a medical center, postpone getting certain follow-up scans, and switch certain in-person appointments to telehealth appointments.
“We can take the lessons we learned during the pandemic to increase clinical trial enrollment in the future,” said Dawn Hershman, M.D., M.S., professor of medicine and epidemiology and director of the Breast Cancer Program at the Herbert Irving Comprehensive Cancer Center at Columbia University Medical Center in New York City. “We learned how to make it easier for patients to participate, especially those who are working and have other commitments.”
As of June, most medical centers stopped limiting new enrollment in clinical trials. Doctors say that people with breast cancer shouldn’t let the pandemic stop them from looking into participating in a trial.
“If you’re someone with advanced disease, you should always consider clinical trials as a treatment option — including during the pandemic,” said Steven Isakoff, M.D., Ph.D., medical oncologist in the breast cancer program and associate director for clinical research at Massachusetts General Hospital Cancer Center in Boston. “There are so many promising new treatments and trials right now.”
Breast cancer screening
From mid-March through early June, many radiology and imaging centers across the United States stopped doing routine mammograms for people with no symptoms.
Imaging tests done for reasons other than symptoms were delayed during those months if the medical team considered it safe. For example, follow-up imaging was delayed for people who had completed breast cancer treatment but who didn’t have any new symptoms and were considered to be at low risk of recurrence. Follow-up imaging to further investigate a finding on a routine mammogram was also delayed in some cases.
In general, imaging tests and biopsies were still taking place during the pandemic for people at higher risk because they had a breast lump, a breast abscess, or bloody nipple discharge. In areas with the highest numbers of COVID-19 cases, such as New York City, imaging even for high-risk situations was briefly put on hold.
Now that most radiology and imaging centers are offering routine mammograms again, doctors say they hope people who are due — or overdue — for routine screening will schedule their mammograms as soon as possible. By delaying mammograms too long, people risk having breast cancer diagnosed at a more advanced stage, when it’s more difficult to treat.
“I worry that some women are still going to be putting off getting a screening mammogram because they are scared of getting COVID-19,” said Kara-Lee Pool, M.D., a breast radiologist with RAD-AID International in Los Angeles. “We need to let women know that as long as you and your imaging center follow basic precautions like universal masking, frequent handwashing, and symptom checks prior to arrival, the risk for transmission in a non-surge area is minimal, and the benefits of screening outweigh the risks.”
How to get the care and support you need during the pandemic
If you’re being treated for breast cancer during the COVID-19 pandemic, all the uncertainties and changes to your treatment can leave you feeling frustrated and confused. Here are some tips for navigating this challenging time:
Don’t put off getting treatment because you’re afraid of catching COVID-19 at a clinic or hospital. The doctors we spoke with said they feel confident that the benefits of seeking care outweigh the risks.
“Breast cancer surgery, reconstruction, and treatment are all safe to receive at this point. And if you have breast cancer, it needs to be treated. It will progress otherwise. It would be a tragedy if fear of COVID-19 kept women from getting treated for breast cancer,” said Dr. Potter.
If you’re nervous about seeking care, talking with your treatment team about the precautions they’re taking may make you feel more comfortable. Also, ask about changing the location where you are getting care if it’s a hospital setting with a lot of COVID-19 patients in the same building or sharing the same entrance. It may be possible to switch to receiving care at a different facility that’s separate from where COVID-19 patients are being treated.
- Have a family member or friend virtually join you at medical appointments. Since you may not be able to bring someone with you to in-office medical appointments, arrange to have them join by phone or video call instead. “It’s very valuable to have a loved one participate by FaceTime or Zoom and be an extra set of ears and provide emotional support,” said Dr. Sprunt. She also recommends recording the call (with your doctor’s permission) so that you can listen to it later.
- Understand the challenges your medical team may be facing. During the pandemic, doctors have been grappling with many challenges including loss of staff members, adapting to new ways of communicating with patients, and taking care of patients with COVID-19. Your doctors may have to delay or change aspects of your treatment because of factors that are outside of their control. However, it’s still reasonable to expect that they will be keeping you updated and answering your questions.
Get a second opinion if you don’t feel like you’re getting good care or if you’re having trouble getting certain treatments. By switching members of your medical team or traveling to a medical center in a different area, you may be able to get care that you couldn’t receive from your original team.
“If you want a particular kind of breast reconstruction and one facility or team is saying you can’t get it because of the pandemic, you might be able to find a different team that is still doing that kind of reconstruction,” said Dr. Srinivasa.
However, you should make the decision to switch doctors very carefully. Before shifting your care, be sure that you can get access to the procedure or treatment you need by an equally qualified team.
- Take care of your mental health. If you’re feeling anxious or depressed, look into virtual appointments with a mental health professional or a support group for people with breast cancer that meets through online video. Dealing with a cancer diagnosis and the extra disruptions to treatment and daily life caused by the pandemic can be very stressful. Talking about your feelings with someone who understands what you're going through can make the situation more manageable.
Is the healthcare system better prepared for surges in COVID-19 cases?
It remains to be seen how spikes in new COVID-19 cases might affect breast cancer treatment and screening going forward. The healthcare system may be better equipped now, compared to the beginning of the pandemic, to handle surges in COVID-19 cases without as much disruption to cancer treatment.
“I would be surprised if we find ourselves in a position again that we can’t do some breast cancer operations, now that we have a lot more COVID-19 testing and a better understanding of how supply chains for PPE and other medical supplies could be affected,” said Dr. Sprunt. “I think we will be better prepared for whatever spikes we might experience.”
When discussing treatment plans with her patients, Dr. Manasseh is factoring in the possibility that there may be a big surge in COVID-19 cases in the fall. She recently advised someone scheduling a surgery that she might not want to wait until the fall. “We are making a concerted effort to think about where people’s treatment plans will be in the fall,” said Dr. Manasseh.
The doctors we spoke with also said that in the long run, some of the changes to breast cancer treatment that occurred because of the pandemic may ultimately improve care and reduce costs. For example, shorter hospital stays and using telehealth for more appointments are positive changes that are likely to stick. Dr. Hershman noted that changes her hospital made to avoid crowding have led to patients being able to get in and out faster when they come in for blood tests or injections.
“We have changed the way we practice dramatically in that we’re much more efficient,” said Dr. Dietz. “Some of these efficiencies may ultimately benefit patients in the future,” she added.
How to stay vigilant about your safety
As the pandemic stretches on into the summer and fall and states lift stay-at-home orders and start to allow businesses to re-open, you may find yourself being a bit more casual about washing your hands, keeping your distance from other people in public, and wearing a mask. Psychologists call this reaction “caution fatigue.”
“We can become desensitized to stress and repeated warnings,” said Jackie Gollan, Ph.D., associate professor of psychiatry and behavioral science and a clinical psychologist at Northwestern University’s Feinberg School of Medicine in Chicago. “Our brains adjust to the alarms to reduce our stress, and then we can take longer to respond to warnings or start to ignore them.”
Still, the pandemic is far from over. We don’t have FDA-approved treatments for COVID-19 or vaccines to prevent it. Healthcare providers and health officials are concerned that people will interpret the business re-openings as a sign that the risk of contracting COVID-19 is lower.
“I encourage people in treatment for breast cancer not to let their guard down as the country opens up,” said Dr. Isakoff. “We are seeing what can happen with hot spots developing in some parts of the country. Keep wearing your masks and washing your hands. Stay vigilant in following safety precautions, even as we get back to more mobility and interaction in society.”
If you’re experiencing any change in your condition or symptoms or want to talk about your COVID-19 concerns, he added, don’t hesitate to reach out to your medical team.
“The breast cancer healthcare provider community is here for you, we have never stopped coming to work and we want to make sure we’re providing the best care possible, so don’t wait to seek care if you have an issue,” he said.
Stay tuned as Breastcancer.org continues to cover this unfolding story.
For frequently asked questions, podcast episodes, and videos about COVID-19 and breast cancer, read our article Coronavirus (COVID-19): What People With Breast Cancer Need to Know.
We want to know how the COVID-19 pandemic is affecting your life and your treatment. Join the conversation in the Breastcancer.org Community Discussion Boards, and tell us how you’re managing this situation throughout your treatment or survivorship.
Written by: Jen Uscher, contributing writer
This Special Report was developed with contributions from the following experts:
Benjamin O. Anderson, M.D, professor of surgery and global health medicine at the University of Washington in Seattle, WA
Robin M. Ciocca, D.O., breast surgical oncologist at Main Line Health in Wynnewood, PA
Jill Dietz, M.D., FACS, president of the American Society of Breast Surgeons, , associate professor of surgery at Case Western Reserve University School of Medicine in Cleveland, OH
Jackie Gollan, Ph.D., associate professor of psychiatry and behavioral science and clinical psychologist at Northwestern University’s Feinberg School of Medicine in Chicago, IL
Dawn Hershman, M.D., M.S., professor of medicine and epidemiology and director of the Breast Cancer Program at the Herbert Irving Comprehensive Cancer Center at Columbia University Medical Center in New York, NY
Steven Isakoff, M.D., Ph.D., medical oncologist in the breast cancer program and associate director for clinical research at Massachusetts General Hospital Cancer Center, assistant professor of medicine at Harvard Medical School in Boston, MA
Donna-Marie Manasseh, M.D., chief of the division of breast surgery and director of the breast cancer program at Maimonides Medical Center in Brooklyn, NY
Kaitey Morgan, RN, BSN, CRNI, director of quality and standards for the National Infusion Center Association, Austin, TX
Kara-Lee Pool, M.D., breast radiologist with RAD-AID International, member of the Society of Breast Imaging, Los Angeles, CA
Elisabeth Potter, M.D., plastic surgeon in private practice in Austin, TX, affiliate faculty member in the department of surgery and perioperative care at the University of Texas at Austin Dell Medical School
Chirag Shah, M.D., breast radiation oncologist, director of breast radiation oncology and clinical research in radiation oncology at the Cleveland Clinic in Cleveland, Ohio
Julie Sprunt, M.D., FACS, breast surgeon with Texas Breast Specialists in Austin, TX
Dhivya Srinivasa, M.D., plastic surgeon and academic faculty member at Cedars-Sinai in Los Angeles, CA
Amy Tiersten, M.D., clinical director of breast medical oncology and professor in the division of hematology and medical oncology at the Icahn School of Medicine at Mount Sinai in New York, NY
Lori Uscher-Pines, Ph.D., senior policy researcher at RAND Corporation in Arlington, VA
Marisa Weiss, M.D., chief medical officer and founder of Breastcancer.org, director of breast radiation oncology at Lankenau Medical Center in Wynnewood, PA
Brian Wojciechowski, M.D., medical oncologist at Riddle, Taylor, and Crozer hospitals in Delaware County, PA and medical adviser to Breastcancer.org
Terri Lynn Woodard, M.D., director of the MD Anderson oncofertility program, associate professor in the department of gynecologic oncology and reproductive medicine at the University of Texas MD Anderson Cancer Center, Houston, TX
This special content made possible in part through generous support from AstraZeneca; Daiichi Sankyo; Eisai; Genentech; Lilly Oncology; Pfizer; Seattle Genetics; an independent educational grant from Merck & Co., Inc.; and individuals like you.
During these unprecedented times, we are working very hard to meet the increased needs from our community. We appreciate any and all donations to support the programs and services our community relies on. Please make a donation online today or text HELPBCO to 243725 to donate via your mobile device.
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