Metastatic breast cancer and COVID-19 anxiety

Many people are struggling with the stress of COVID-19, the disease caused by the new coronavirus spreading around the world, and the restrictions put on social life and activities. People with metastatic breast cancer are particularly sensitive to these pressures. They are vulnerable to this disease and have been told to take extra precautions, but this can leave you feeling more alone. LBBC is here to provide you with information and support as our country copes with this outbreak.

Living Beyond Breast Cancer CEO Jean Sachs, MSS, MLSP, spoke with licensed therapist Pamela Ginsberg, PhD, about the ways social distancing and fears about COVID-19 may affect people with metastatic breast cancer. Their conversation highlights the emotions many people are feeling and offers ways to manage them and find connection. Watch the video, listen to audio, or read the transcript below.

Pamela Ginsberg, PhD
Pamela Ginsberg, PhD, is a licensed psychologist who specializes in women’s health and wellness.  With over 25 years of experience, Dr. Ginsberg works with women with all cancers at all stages, with a special interest in working with women with metastatic breast cancer. Read more. 

Jean A. Sachs, MSS, MLSP

Chief Executive Officer, Living Beyond Breast Cancer

Jean began her work with LBBC in 1996 when she became the organization’s first executive director; she was named CEO in 2008. Jean brings a lifetime of women’s advocacy experience to her role as CEO. She lives LBBC’s mission everyday by speaking with newly diagnosed women about their needs and gaps in support. Read more.

Jean Sachs:
Hi, everyone. It's Jean Sachs. I am the CEO of Living Beyond Breast Cancer and we are coming back to you again today with Pam Ginsberg to talk about managing stress, managing anxiety through this very difficult time that all of us are facing. For those of you that weren't able to listen to the first interview, Pam Ginsberg, who is a licensed psychologist, joined us and gave us some really helpful tips of practical things you can do if you start feeling really stressed and anxious. The feedback on that was great – please find that on LBBC.ORG if you didn't have a chance to listen to it yet – but we wanted to bring Dr. Ginsberg back again to talk more specifically about the metastatic community, who we know are facing different challenges. We're all facing challenges but their challenges are unique to what many of us are facing and we've been collecting questions and having dialogues with our community.

First, Pam, I want to thank you again for making the time to be with Living Beyond Breast Cancer. It's always a pleasure.

Pamela Ginsberg:

Thank you.

Jean Sachs:

What the hard things we are hearing from the metastatic community is they already feel like they're living on borrowed time. They know they're living with an illness that is not curative at the moment and they want to live. They want to do as much as they can when they feel well, and many of them feel well right now but they can't see their friends, they can't see their family. I've talked to people who can't see their parents. And their parents have to decide do they see your grandchild or not. And it feels like such a loss that they're having to further isolate when they already feel like their time is limited. What thoughts do you have?

Pamela Ginsberg:

It’s one of the hardest things and it's what I've been hearing a lot from my own patients and I certainly can understand the frustration. [This is difficult] for those of us who don't have an illness, this is difficult for people who do have an illness and you have to be so much more careful. It's another layer and a big layer of the problem that we're all experiencing.

I want people to see this as a unique period of time. The difficult part is we don't know how long that period of time is going to last and I think that that is a particularly difficult thing to manage psychologically. But we know that this is a unique period of time and we have to do things differently during this period of time when your health has to be the first priority.

We're fortunate enough to live in a time where we can connect lots of ways. I know that doesn't include human touch and kissing grandchildren and those kinds of things, but we can connect. Look what we're doing right here! People can see each other through their phones and through their computers. I really want people doing as much of that as humanly possible because it does feel like at least we're having a conversation and we can see each other's facial expressions and we can walk around the house with our phones and tell people what we're doing and cook a meal together and maybe even eat together. As much of that as you can, please do [so].

But I think that we just have to accept the grief of missing some things right now and events, especially like graduations and weddings and things like that. It's, it's very, very difficult.

Jean Sachs:

How is it okay to mourn that loss and then move on? Cause what I've been thinking a lot about is our fear of COVID-19 is real. We should be afraid, this is not an irrational fear.

Pamela Ginsberg:

That's exactly right. This is not an irrational fear, and we have to adapt. We have to adjust our behavior because this is a very real threat to your health. Grief is grief. Grief is going to happen the way it happens. I think that we fear grief a lot, but I encourage people to just let themselves feel sad. This is sad. It's just downright sad to have to be separated and isolated from people. Feel the grief. Let yourself cry about that. Let yourself mourn that loss for the time being. But you're right, this is not an irrational fear. I talk to people a lot about catastrophizing and having fears be exaggerated in our minds. This is very real, although we can still catastrophize.

Jean Sachs:

Yeah, we have to be careful. Like what did I hear? Embrace your feelings. You should be anxious, if you're not fearful, but then you have to deploy all the things you can do to protect yourself.

I know what I've heard from several people in the metastatic community is they're hunkering down, which is an interesting phrase. They just feel like they have figured out the people that they are going to be with – we also know that there are women and men that are alone – but hunkering down and creating this safe space, wherever it is, that is something we're not used to doing. What about for people who are alone right now?

Pamela Ginsberg:
Yeah, there are communities that offer online group services and online chats that Living Beyond Breast Cancer is a great example of that through, not just the videos that you're doing, but through the Helpline. Many cancer support communities are offering all kinds of online support group services. Those are really available right now actually, much more available than they ever were before. Just by doing a little bit of searching about online support, nobody has to be alone 24/7 with this if they don't want to be. Physically you're alone in your space, but you do not have to handle this and carry this alone because there are so many other people who are feeling the same way and going through a very similar experience.

Reach out, those groups are available. The other thing I'll say is that across the country, mental health providers, psychologists like myself and other mental health providers, are providing telemedicine services. We're doing it in ways that we've never done it before. We're all used to doing the face-to-face and we've never really had to do [telemedicine]. This is very available now if you want one-to-one psychotherapy or counseling that is available to you. Federally, the guidelines for doing telemedicine have loosened so much that it's mostly being covered by insurance as well.

Jean Sachs:
Wow. That's very good news.

While we're on the subject of telemedicine, I think something else we've been hearing from our community is their appointments with medical oncologists have been moved to telemedicine. I think whenever they can keep metastatic patients out of the hospital, they're really trying to keep them out. For many women, particularly those newly diagnosed or who have been living with metastatic for a while, those are really important visits. They really look forward to that connection there. Often they have very close relationships with their medical oncologist. They hug them, there's a physical exam. So a lot of anxiety about how do I get the most out of my tele-visits. I don't know if you have any suggestions on that.

Pamela Ginsberg:

Yeah, I think that whenever you can, request [it]. Many doctors are doing these kinds of things via platforms like this, where they're connecting face-to-face with people and they're having conversations through video, face-to-face, which is definitely a preferred way of doing it.

We miss a lot in communication when we're on the phone because we're not seeing facial expressions. If your doctor is offering it, take it and if your doctor's not offering it, ask for it. The other thing that they've loosened is the platforms that doctors can use to perform telemedicine do not need to be HIPAA-compliant for this period of time, so they can use FaceTime to connect with you or any other way of connecting via a live video. Ask for it. If they're not offering it, at least then you get that level of communication. No, you don't get the hugs but [you can] use your hands and use your body to convey your message. My guess is that your doctors are getting better at connecting with you in that way. If you [have something and say] look at this spot right here you can really get in there and let your doctor see you.

Jean Sachs:

That's really helpful because I think it is an adjustment and there's so much connection between metastatic patients and their primary provider.

I want us to switch gears for a second and talk about women who are living with metastatic breast cancer who may have younger children at home, and maybe their partner if they have a partner. Everybody's working from home and as we know, kids tend to get sick pretty often — we're isolating now, so maybe less — but how do you explain to a young child, that you might need some physical distance, you might not be able to hug or snuggle in the same way, that they might see you washing your hands more often?

Pamela Ginsberg:

I always want people to use really honest, direct language when they're talking to children. I think that dancing around it or sugarcoating it or calling it something other than what it is — using pet names — I don't find that to be the best strategy. Be direct. Say what you're doing and why you're doing it. Our children are capable of understanding a lot more than what we give them credit for. We're trying to protect their feelings, but when children feel as though they're not being told something or there's a secret or adults are whispering in the corner and not telling their kids what's going on I think that raises the anxiety level of those children. The more we can, be direct and honest and tell them what is happening and why it's happening and that it's not going to last forever.

Again, we're going to have other ways of connecting with each other. Even though it's not snuggles right now, we're going to find ways.

Jean Sachs:
Yeah. We just want to acknowledge that we know for the metastatic community as well as those with early-stage breast cancer, this is a really challenging time. If you have a pre-existing health condition, we understand this is not an easy road. And I feel like every day there's different landmines that you have to go through.

Pamela Ginsberg:

One other thing, Jean. One of the things that I'm hearing from my patients is an emergence of almost PTSD symptoms, because [of] the trauma of being diagnosed, that trauma that every metastatic woman has gone through. Whenever we have another kind of trauma or another threat, it's going to trigger the trauma from that diagnosis. A lot of people are reporting increased fears and worries and nightmares and sleep problems, going down the rabbit hole of Googling again when they stopped doing that, catastrophizing — those kinds of things. And so I just want to normalize that. I want to say that a lot of people are going through that, [and] it will pass. Use all of the strategies you use, all of the things that you used before to help you manage all of those difficul, symptoms. Make sure you're exercising, make sure you're eating properly, make sure you're using your meditation and getting as much sleep as you can and talking. Please talk about this. Connect with your family, with your friends, with your community, with the breast cancer community. It really does help.

Jean Sachs:

Yeah. And that was going to be my last question: what can you do to stay in the moment? I think this is a time where thinking about what's it going to be like tomorrow or 3 weeks from now, doesn't yield good results. Any recommendations for being present?

Pamela Ginsberg:

I think that one of the best ways of being present is by offering your kindness to somebody else. Anything that you can do to help another person is going to help you to settle yourself a little bit. We need everybody working together right now and cooperating with each other, but if I know I have a friend who's really struggling, I'm going to call that friend more often, or if I can, send a gift through Amazon or whatever, I'm going to try to do that more. Anything that you can do, if you, your spouse, or somebody in your household is going to the grocery store and somebody else is isolating, get in touch with them and see if you can help. Any act of kindness that you can offer is going to help you feel like you're contributing to the greater good, and I think that's very healing.

Jean Sachs:

That's great advice. I actually got a gift in the mail yesterday from someone and I'm so happy. Someone took the time at this moment to send something and they specifically shopped at a small business, I'm sure they ordered it online, but supporting your local businesses is another way to feel like you're giving back when so many people are struggling with the economy

Pamela Ginsberg:

And as good as that made you feel, that made the giver feel equally good. It puts some goodwill into the world.

Jean Sachs:

Right. Well, Pam, thank you so much for your time. This is week two. We talked last week and we probably will talk next week if you have the ability to do that.

I just want to remind everyone that Living Beyond Breast Cancer is open and operating. Our Helpline is available and our website. Please reach out, go to our Facebook pages, send us a message, tell us what you want to know, what you want us to be talking about. We really want to be here for you.