Stories about breast cancer that can inspire and inform

Blog  |  Newsroom

Expert Advice for Metastatic Breast Cancer Patients During COVID-19

Women and men living with metastatic breast cancer (MBC) are already living with a disease that could claim their life. Now, in the midst of the COVID-19 pandemic, they’re facing a new health threat. The therapies they’re on are designed to slow the progression of their breast cancer but they also require patients to be vigilant about their health so that colds and viruses don’t turn into more serious health issues.

Susan G. Komen recently held a Facebook Live event addressing some of the fears and concerns people living with metastatic breast cancer have about COVID-19. Oncologists Ian Krop and Kathy Miller, both experts in the MBC field, answered questions and participated in a discussion moderated by Pam Kohl. Kohl is living with metastatic breast cancer and is the director of the Komen North Carolina Triangle to the Coast Metastatic Breast Cancer Collaborative Research Initiative.

Below are excerpts from that discussion.

What are you telling your MBC patients that they should be doing to stay safe?
Dr. Krop: “I generally tell my patients to follow the same directions that we’re all following, that the CDC is telling all Americans to be following. That includes, most importantly, the social distancing, as well as hand washing and keeping touchpoints (like a door handle) clean. That doesn’t mean never going outside your house, but it does mean being cautious and it is important to keep your distance from other people. Try to minimize situations where there’s a lot of people around, like grocery stores, and if at all possible, have other people shop for you. If not, just be careful about what gets touched and washing your hands.”

Dr. Miller: “Many of the discussions we have with all of our patients, particularly with our patients with metastatic disease, are about finding an appropriate balance between controlling the disease and taking precautions, but also continuing to live their lives, meet their responsibilities and have a life that is meaningful and enjoyable.”  

How should MBC patients celebrate holidays safely?
Dr. Miller: “Right now is really a peak infectious time and unfortunately that coincides with some special celebrations. I think there are other ways we can try to recreate that closeness, whether it’s through a virtual platform, and find other meaningful ways to have those celebrations, but that does not have a bunch of people all gathering together around a table.”

What does the ‘peak’ mean of a communicable disease like COVID-19 mean?
Dr. Krop: “It means, essentially, the time where the modeling by scientists has suggested is going to be the time when the most people are ill, meaning the most people are going to be in the hospital. So it’s not necessarily the time where there’s the most infection or where people are the most at risk for infection. That may have been weeks before. The hope is the peak is going to be reduced, meaning the number of patients who are in the hospital is going to be lower because of all the social distancing and other measures that people have been taking. It’s also the hope that the peak will be short-lived and after that time, the number of people in the hospital will go down quickly as the virus starts to hopefully burn out.”

Dr. Miller: “It doesn’t mean it’s gone down to zero or that it’s going to stay down, or that the risk of running into somebody if you’re out in a social gathering who might be infected or contagious is really meaningfully less. How quickly after the peak they will come down, whether they will stay down, when they will reach a level that we might be able to be not as strict with social distancing without really accepting a substantial increase in risk? – we really don’t know.” 

What are the COVID-19 risks for patients with lung metastasis and what symptoms should they look out for?
Dr. Miller: “I think a couple of things are really important for people to recognize. First, we have virtually no good data specifically for women with metastatic breast cancer. Patients at greater risks of serious complications from COVID-19 are more likely to be men, more likely to older, more likely to have significant underlying comorbidities, other health problems that come with them, are often obese, and it tends to be more severe in minority populations, particularly African Americans and Native Americans. It’s less clear that metastatic disease involving the lungs puts you at greater risk than metastatic disease involving the liver or the bones. It seems reasonable; I just don’t think we have data to know that.”

Dr. Krop: “The tricky part of this virus is that it doesn’t necessarily present the same in every patient or every person. While clearly respiratory symptoms like cough, shortness of breath, and fever are classic for this, as we’ve seen more and more patients, we’re realizing that it can present with other manifestations as well.”

What should I do if I think I’m getting sick?
Dr. Krop: “In general, if you’re feeling unwell and it’s not the same symptoms you’ve had for a long time that you can attribute to your cancer, but it’s something that’s new, it’s worth checking in with your health care team and say ‘is this something that I should worry about?’”

There is some information out of the FDA that CDK4/6 inhibitor treatment can increase the risk of lung infections. Are CDK4/6 inhibitors still safe to use during this time?
Dr. Krop: “These are very beneficial drugs. I think the risk of increased infections with these drugs is pretty modest based on what we know so far. There is no data that they increase the risks of getting COVID-19 infections, so I think if patients have a cancer that needs to be treated with a CDK4/6 inhibitor, I think it makes sense to continue to use it. I certainly wouldn’t stop the CDK 4/6 inhibitor on a patient who is already receiving it and doing well on it.”

How is COVID-19 affecting clinical trials?
Dr. Krop: “Many of us have decreased the number of trials we’re doing and really focusing on trials we think are likely to have a benefit that outweighs this potentially small increase risk associated with the extra visits and contacts with the trial. So at our institution, we still are doing trials for patients with metastatic breast cancer, it’s just we’re doing fewer of them. We focus on the ones we think are going to make the biggest impact.” 

Dr. Miller: “For our therapeutic trials, we’ve also worked with our institutional review board (IRB) to try to look at where can we use virtual visits in those studies to maintain patient safety and minimize the risk that our patients are accepting, but still continue those trials. So at this point, all of our therapeutic trials are continuing. We are continuing to enroll new patients.”

If a clinical trial has been put on hold, what options are available for patients living with MBC?
Dr. Miller: “It’s possible the trial is being stopped for reasons having nothing to do with COVID-19. It’s possible the trial was stopped because they discovered the drug wasn’t effective, or the drug had side effects that make continuing it more risky. It’s possible the trial was put on hold at that institution because they were so overwhelmed with COVID-19 patients they simply didn’t have the staff capacity to continue the trial in a safe way. If that’s the case, then I would ask are there other sites participating in this trial who are still up and running who might be able to accept me and transfer so that I can continue? So before panicking, I’d ask some questions about why the trial has stopped and what options I have as a trial participant who is doing well?”

Dr. Krop: “There are very few instances I can imagine in which you would stop a trial for a patient who is benefiting from it. I think the bigger issue is, if you’re looking for a new trial, there may be somewhat fewer options, but it’s very likely that these trials will open back up again soon. We’re not taking away trials from patients that are already on them.” 

Hospitals and the health care system are being stretched thin, and we’ve seen news stories that in some countries patients are being triaged for priority care. Those of us with MBC have a lot of anxiety and are nervous about what this means for us. Are we, MBC patients, at risk of being triaged if we get COVID-19 and become critically ill?
Dr Miller: “For someone with metastatic breast cancer, I think their wishes for care and how aggressively they would want to be treated would be one point of discussion but certainly not the only point of discussion. The other thing we’ve been talking about as an Oncology Center and as a Cancer Center is carefully evaluating the benefit of all of the treatments we give to our patients and thinking through the scenarios of, if the stress on our medical system of COVID-19 is so much that we can’t continue to deliver treatment to all of the patients that we are treating.”

Do we need to be rethinking our DNRs if we have them?
Dr. Miller: “Ideally DNR discussions would happen with the patient able to participate and with their families physically present with them. Their families are not allowed in our facility in our hospital to visit them, so their families may be joining us by phone or by virtual platform. Many of those discussions happen because the patients have become critically ill so quickly, are sedated on a ventilator and are not able to participate. I think it’s always a good idea for your family, your loved ones and the designated people who would speak for you – if you were suddenly not able to speak for yourself, whether that’s from COVID-19 or a severe car accident that left you unable to express yourself – for your loved ones to know your wishes.”

For those MBC patients who are still going to their cancer centers and to their hospitals, what can they do to be safe as they go in for their treatments?
Dr. Krop: “Cancer centers have put into place a very large number of policies and procedures to make the cancer centers as safe as possible. I think many of us feel like these centers to be one of the safer places you can be right now because we’re also cognizant of this risk. Right now people can feel fairly safe coming to the clinic….we’re minimizing the number of people who are in a waiting room at any given time, separating them out, minimizing visits and trying to do as many things virtually as possible.”

Should patients be concerned about medication supplies?
Dr. Krop: “I have not heard of a problem with cancer medications likely being in short supply. Fortunately, there’s not a lot of overlap between the drugs oncologists give and the drugs given for hospitalized COVID-19 patients.”

Will compassionate use of drugs be more difficult now?
Dr. Miller: “I don’t think so. I know the FDA has been tracking drug supply, and there was particularly a concern for some generic drugs that might have been predominantly manufactured in China where they were concerned about the supply chains being disrupted. I don’t think any of those concerns at this point have materialized, at least not in oncology.”

How are pharmacies adapting to make sure MBC patients can continue to receive pain medications – particularly ones that require identification for pick up?
Dr. Krop: “At least in my area in Massachusetts the pharmacies have not been able to ship restricted drugs like narcotics to patients. People are still having to come to the pharmacy to pick up their narcotic prescriptions. Unfortunately, we haven’t been able to break down that barrier of shipping controlled substances, but someone else from the family can come pick it up. That’s what many of our patients have been doing who don’t feel comfortable coming into the pharmacy themselves.”

What should you do if you’re living with MBC and waiting on COVID-19 test results?
Dr. Miller: “They should definitely be self-quarantining in an even more stringent way than the social distancing that we were talking about earlier.”

Have you [medical oncologists] been asked to treat COVID-19 patients – who are not cancer patients- to back fill the healthcare systems current needs?
Dr. Miller: “Major stress on our palliative care team has had them turn to the oncology services and have asked us to help them cover many of those palliative care consults for ‘goals of care’ discussion with COVID-19 patients and their families. Another change has been with the in-hospital staff who used to care for cancer patients, day-in and day-out, and most importantly night-in and night-out, have been called and redeployed for managing patients in the ICU and the emergency room.”

Do either of you have any final pearls of wisdom for us [MBC patients] as we’re facing COVID-19?
Dr. Krop:
 “I would just remind people that many clinics and most cancer centers have social workers and we’re all starting programs specifically to help patients cope with this added stress. Reach out to your providers and if you already have a social worker that you work with, reach out to them. You’re not in this alone – even though you may be physically alone – you’re certainly not virtually alone, and we have help out there for you. This is stressful for everybody, we know it can be even more stressful if you’re already having other things going on in your life, so reach out for help.”

Dr. Miller: “There is a lot that is unknown that is a frightening feeling and it is one that is all too familiar to our patients with metastatic disease. I think we need to be patient with each other, to remember compassion and kindness, and most importantly to be patient with ourselves. We can ask for help when we need it, we can take a break from the news and from the stresses when we need it, we can make sure that we are eating right, sleeping enough, exercising enough, laughing enough – doing all of those things in reasonable proportions and reasonable frequency to help keep us healthy and sane. We will get through this, but it’s going to have some uncertain times along the way.”

This is a hard time for everyone. Many breast cancer organizations are offering more social support services online and by telephone. If you’re feeling scared or alone, or just need to talk, please reach out to Komen by calling our Breast Care Helpline at 1-877 GO KOMEN (1-877-465-6636). Our trained and caring helpline staff can provide information, social support and help with coping strategies related to anxiety or concerns during these uncertain times.