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Coronavirus and Breast Cancer Diagnosis During a Pandemic

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Published on April 28, 2020

Key Takeaways

  • Despite going through a breast cancer diagnosis during a global pandemic, it has offered an opportunity for us to find the root of good right inside of our house and our families.
  • While deciding to go public with your diagnosis is a personal choice, it can also open up new relationships that become a source of support.
  • There are depths of strength inside of all of us that expand throughout our community.

What does it feel like to be diagnosed with cancer during a global crisis? How do patients connect with others? How do you protect yourself during chemo?

Rebecca Seago-Coyle, our Director of Content and breast cancer survivor herself chats with Elizabeth Bella and Alicia Larson to discuss the emotions around being diagnosed with breast cancer and different coping mechanisms.

Watch to learn how Elizabeth and Alicia navigate through diagnosis and treatment.

[Due to extreme load on our website and Zoom platform, viewers may experience a time delay between the audio and video of the interview - please note the transcript can be read below.]

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Transcript | Coronavirus and Breast Cancer Diagnosis During a Pandemic

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

Rebecca Seago-Coyle:
Hi. I'm Rebecca Seago-Coyle with Patient Power, and I'm joined here today with one of my great friends, Elizabeth Bella, who's in Anchorage, Alaska, and a new friend, Alicia Larson, who is in North County San Diego, California. Thank you both for joining us today.

Alicia Larson:
Thank you.

Elizabeth Bella:
Thanks. Glad to be here.

Rebecca Seago-Coyle:
Yeah. These wonderful women have been diagnosed with breast cancer amidst the coronavirus. As we all know that going through breast cancer, I'm a breast cancer survivor myself, that's stressful enough, but add in a global pandemic, and you've added in a new dynamic to the situation. Elizabeth, you're in Alaska, how are you feeling these days? And I guess tell me a little bit about your diagnosis.

Elizabeth Bella:
I was diagnosed in November through a routine mammogram. I have a family history, so I've been getting mammograms since I was 40 so five years of mammograms in between, with a break for having my child who is now 4 years old, a little boy named Pirlo. Initially the diagnosis was DCIS, and then I had surgery in February after a long journey of deciding what the right path was for me and it was determined I had invasive breast cancer. I've just started on my treatments. Friday, tomorrow will be my fourth week of chemotherapy, paclitaxel (Taxol) plus trastuzumab (Herceptin).

Alaska right now it is snowing outside, which is not atypical for April in Anchorage, Alaska or parts of Alaska, but we are kind of feeling very cooped up. We have pretty strict social distancing mandates in place with our health department and with the State of Alaska. I'm currently working at home in my spare room, which is good. I have a great space set up to work here. Aside from essential services, we're really here in lockdown, which has its pluses in terms of I'm not being exposed to people, but also difficult in that I really do feel isolated.

Rebecca Seago-Coyle:
Yeah. I think we were all, I'm going to use air quotes, but young when we were diagnosed. I don't think it's very typical for women in their 30s and 40s to really get diagnosed with breast cancer, and it does feel very isolating. You were diagnosed with, you said DCIS and then you had a lumpectomy, and then that's when they decided that you actually had invasive. You're triple-positive, is that correct?

Elizabeth Bella:
That's correct. It's triple-positive, stage IA. I had a partial mastectomy is what the surgeon preferred to call it on February 11th and I received the results a week later after I had gone in for my post-op, which was very surprising to me. That was a really difficult day to absorb the news that it probably wouldn't be—four to six weeks of radiation isn't necessarily a quick fix followed by tamoxifen (Nolvadex or Soltamox), but it wasn't what I expected to hear. So that's been a sort of free fall from the week of Thanksgiving to the past few weeks to absorb and understand what was going on, what my treatment plan would be, and what my best options would be.

Rebecca Seago-Coyle:
Yeah. How are you feeling now with the COVID stuff? You're going to treatment every week. Is it any different? I mean, did it start off different? I think you started treatment right when everything started to hit the fan, so to speak.

Elizabeth Bella:
That's correct, yes. My first chemotherapy session was on March 13th, Friday the 13th, a day I picked deliberately, because first of all I wanted to get it started and get it going. I'm a planner professionally, an environmental planner and a planner by trade. At that time, nothing was really in lockdown. I showed up with a friend, my good friend Carrie. I wouldn't say it was like a party-like atmosphere, but there were visitors at the time, and we were doing our best to try to make it lighthearted. I was extremely nervous and anxious going into the first treatment.

COVID-19 wasn't really on the radar as far as an immediate threat in the community here or even globally. We knew what was happening, but the measures to restrict visitors didn't really take place for a couple of weeks. Now when I go in it's quite empty. They screen you at the main door of the hospital. It is still very frightening for me to leave the house, drive to a healthcare facility and not be able to go there with anyone.

I do have my friend Carrie, who's still bravely driving me there. She drops me off, she picks me up afterward. I have an excellent support network in the community. I have lots of people checking on me, but having to walk through those doors every week by myself and see the place in its current state of lockdown is distressing. It's hard to experience, but I also feel good, because every week is another checkbox, another week done.

Rebecca Seago-Coyle:
Yeah, I remember those countdowns—one more day, closer to the end of the treatment. Alicia, you're in your early 40s as well, and you were diagnosed in December, correct?

Alicia Larson:
Correct. I went in in November actually for a follow-up appointment that I had had pre-summer. In May, I had had a mammogram and an ultrasound, and the results on that came back as probably benign. I had had a lump previously about six or seven years ago removed that was benign as well, and it was very similar to that. So I thought that we were kind of in the clear, but I decided to follow up with a surgeon in November and she opted to do a needle biopsy. And so we moved forward with the needle biopsy, and the diagnosis came in early December as invasive ductal carcinoma.

I like the word that Elizabeth used earlier as far as it felt very much like a free fall, because I agree with that sentiment. Your entire life kind of gets turned upside down, and things are definitely thrown into perspective if they weren't in perspective already.

Shortly after that, the pathology came back as also triple-positive as far as the ERPR-positive receptors, as well as HER2. That was a very hard diagnosis the HER2, because it came back initially as HER2 equivocal. And they had to run the test a few different times and even send it to a specialist, because they were curious as to why my diagnosis was stage I and then a grade 1 tumor, but it wasn't mimicking a HER2 diagnosis. HER2 tends to be more aggressive and fast-growing.

I had had this lump for over a year, and it had not changed size, and so it was very curious to them, and so it required extra testing. The entire time we were crossing our fingers and praying that it would not be HER2-positive, because as many of you know, the HER2-positive diagnosis means that it's likely going to be chemotherapy for you, and whereas before I wouldn't have had to undergo chemo.

I am in my second round of chemo. I have a total of six rounds to go. Like the sentiment expressed earlier, I am definitely on a countdown. The middle of June will be my last treatment and so I'm definitely looking forward to that. I'm on a bit of a different regimen than what Elizabeth talked about. I am every 21 days, so every three-week regimen, and I'm on four different chemo drugs.

In regard to the COVID-19 and what's going on right now, we are, of course, on serious lockdown. They have shut down our beaches here, which has been a great outlet for me as far as being able to take walks and be able to feel like I can get out and do something other than just being in my home, because it is a stressful time, but the beaches are locked down, and so we can't do that right now.

The other thing is that in December when I was diagnosed, like I said we felt like a little bit of a free fall and putting everything into perspective. I feel like that transition that many people are going through right now with COVID-19 as far as prioritizing and putting first things first, and we kind of did that as a family in November and December time frame, because our lives began to revolve around this breast cancer diagnosis. And so things that just weren't important anymore, we pushed off to the wayside. And things that were important, we pushed to the forefront.

I feel like people with coronavirus right now are doing that, because they're seeing what's not essential. I think as a society, I think it's really interesting how we're functioning as a society right now, although it is very isolating there's some silver lining in that. That we're finding the root of good in our homes and the root of good with our children and finding personal strength that maybe we didn't know we had before. I just feel like that came a little earlier for myself and for my family because of this diagnosis.

Rebecca Seago-Coyle:
Yeah. You both have children. Alicia, I think you have three daughters, is that correct?

Alicia Larson:
I do, yes. I have a 17-year-old, a 13-year-old and an 8-year-old. Fortunately, no babies at home. I do have friends who have gone through the breast cancer diagnosis and treatments, and they were much younger and had a breastfeeding baby. I can't imagine going through that right now. It's hard enough with an 8-year-old; I can't imagine younger.

Rebecca Seago-Coyle:
Well, in some ways now that everyone is on lockdown, I know they're not going off to school and bringing germs home, which is usually a concern just as you're going through treatment anyways. Because as soon as you start chemo, you're immunocompromised. I know you guys are both working at home. Elizabeth, you have a 4-year-old, and I believe you said he's still going to daycare. How do you handle some of those concerns about germs? I think with any toddler, I think that's always a concern.

Elizabeth Bella:
Absolutely the kids are—well, he's a little petri dish, a little germ magnet. I will say the first year we had him in daycare since he was about five months old. I'm a single mom. His dad is active in his life. We live separately. We share the week. So Pirlo spends the night with me some nights and with his dad other nights. We've been sharing duties. His dad's been very helpful in making sure I'm okay and have everything I need.

We do have a protocol where Pirlo comes in, and first stop is wash hands, change clothes, clean up. His daycare only has about five or six kids attending. They know my situation with my health concerns as well as being a single mom with a full-time job. So he's able to attend along with other essential personnel workers' children. In fact, one of my oncology nurse's children is in his classroom. So that's a source of comfort. We get pictures of our children hanging out during the day.

The daycare is under really extremely strict protocols, state mandate protocols. They do a lot of disinfecting lockdown. They're doing a lot of online content. It's somewhat of a calculated risk where we know it's risky to have him there, but the ability for me to function and continue to be a good mom and a good colleague and just continue with our lives is important that he's in care. I think he's in a better spot being in care than me trying to work at home with him here.

Rebecca Seago-Coyle:
Yeah. I know when I was diagnosed 10 years ago and going through it and finishing up treatment there's a term that we all use as survivors talking about the “new normal.” I think you both touched on this a little bit of you approach things differently. You think about things differently. You try to focus on the things that really matter. Alicia, I think you kind of hit on this as well. You guys went through the initial shock of being diagnosed in December and then when the virus started spreading and such, it's like the rest of the world caught up to that new normal phase of what you guys were already experiencing.

Can either one of you talk about the new normal that you're seeing now?

Alicia Larson:
Sure. I thought I would mention that our case is a little different too that when my first treatment happened much like Elizabeth, is that when I went in for treatment there were no screenings going on. The infusion room was completely full of visitors. I remember thinking at the time, because I had already had my lumpectomy, my surgery, and it was during that time, the end of January that signs were up in the hospital about the flu, and we were concerned just about the flu at the end of January. But then when I moved into treatment and they still weren't screening patients and screening their visitors as well, I remember thinking, "Wow, I'm so exposed. There are so many different people here, and they have their laptops and maybe an older child with them." I just thought, "Wow, all different walks of life coming into the infusion room," and I felt very exposed.

When coronavirus began to take place here in the United States more, we were headed into my first treatment, and my husband suggested that our girls start independent study from school. I was opposed to it because selfishly I was like, "I just want to be at home, and I know I'm going to be sick, and I'm not going to be able to take care of kids. They need to be at school and being taken care of." But hindsight is always 20/20. We took them out of school about 10 days before the lockdown happened, and so my kids were already, I guess you could say, less exposed to the other kids. I'm grateful for that now, because look at what it's turned into as far as the lockdown.

So, our new normal is definitely a lot of schooling here at home. They have virtual school going on. We take a lot of walks, which like I said, it's hard that the beach has closed, and just as of yesterday we have a lot of local trails around our home, and they're closing those down now. That is hard, because you do feel very isolated in your home.

A lot of school going on at home. We've gotten out puzzles to try to pass our time. During that time that they weren't going to school, we were cleaning a lot more. I know that sounds silly, but when you're so worried about getting sick, you're so much more cognizant of what's coming in your home. So if packages are being delivered, we're wiping them down and spraying them down. We were having meals delivered, I was a part of a meal train. But those have now since stopped, which is sad, because so many people want to reach out and help, but you can't guarantee where all of those things are coming from.

Rebecca Seago-Coyle:
You bring up an interesting topic about support. When I was diagnosed, I actually attended a biweekly in-person support group. I'll be honest, the first time I went I was like, "This is not for me." But then I met some other wonderful women who became my friends, and we're still great friends today, and we still talk about the things that come up because of treatment. We can confide in each other. We know that we're not alone even 10 years afterwards. Have either of you decided to go to a support group before or do a virtual support group?

Elizabeth Bella:
I have the list they gave me. We have a good care center here, Providence Cancer Center. They provided a list of resources, and I read through it, and I'm like, "Well, I don't see any groups catering to 40-year-olds with busy jobs and small children." So what I was looking for is like people, people like me that I thought I would have the most connection with. But it turns out just in talking to you, Rebecca, and getting to meet Alicia here and reaching out to other friends—I went public fairly early with my diagnosis. I just went public on Facebook a couple of weeks ago, because I felt like this was much bigger than anything I could handle alone, and it was just easier to put it out there.

I found support in a lot of unexpected ways; other acquaintances going through the exact same similar diagnosis and treatment that are up here in Alaska even. So that was really surprising, eye-opening and in its way, it's very comforting to me—not that any of us want to go through this.

Alicia said something that really struck me is, the root of all good is that in the midst of all this madness and crisis, I found that I have a lot more space to listen to people and spend time connecting with people. I don't feel disconnected. I do feel isolated. I miss seeing people in person. I miss giving hugs, but as far as reaching out and finding a support system, people who are survivors, who are going through this or have gone through this, I feel like there's a richer community available to me maybe because of everything going on.

Rebecca Seago-Coyle:
Yeah. I always say like no one ever wants to join what I call the “pink shirt team,” but when you become one of the team members you share with each other, and really you share your experience. It's funny Elizabeth and I, we're actually on the same treatment that I had 10 years ago. It's very similar. I was on Taxol for 12 weeks and trastuzumab (Herceptin) for a year. Not a lot has changed in treatment, but what we can do is share our experiences and share how we dealt with things. I think there's always a unique way to hear how other people have gone through it.

Something you touched on too, Elizabeth was you're looking for someone like you. There are organizations. I'll just throw out there is the Young Survivor Coalition. It's women who are, I'm going to say 45-ish, because I think these days our lives can be very similar, and a year or two is not going to make a difference, but it's other women who are going through breast cancer at a younger age. It's not our grandmother's condition, it's not our mother's condition, it's our condition. And so, finding that support in others who are going through, having a career, having a toddler at home, having teenagers at home, how you deal with being diagnosed and getting that support you need.

Alicia Larson:
I was similar in that very early on I decided that I wasn't interested in a support group only because I was very fearful of attending the support group and hearing too many sad or depressing stories or a lack of success stories. I knew for me at that time, and even now, wasn't going to be very beneficial for me, because all I was wanting to soak up was success around me and not the scary, sad, frightening stories. I felt like I was so wrapped up in what I was going through myself. I didn't mean it selfishly but that I couldn't take on other burdens at that time. Anytime that somebody reached out to me and said, "Oh, my sister went through breast cancer, and she's six years surviving." Then I would say, "Let me talk to them," and I would get on the phone immediately.

I went public with Facebook and Instagram fairly soon, because for me it was a good coping mechanism. I have a very large family; my husband is the 10th of 10 children. So trying to communicate the story over and over and over again was very taxing, and so to make it public was not only therapeutic for me, but it was also a way to just get the word out as to what was going on.

But coronavirus or no coronavirus I think I would have stayed the same. I wouldn't have wanted to join a support group for those reasons.

Rebecca Seago-Coyle:
Something you said resonated with me too is you're looking for those success stories. It's amazing how many people will say, "Oh my so and so had cancer, and it wasn't a great outcome." That's not what you need to hear in the moment of you're going through it. So that's what I also looked for was those stories of hope, like these people who were living with it for even metastatic disease for a long time, it is possible. It doesn't have to be a death sentence, and you can go on with your life.

One of the tactics that I used was I wasn't going to let cancer stop me from anything. I just kept doing what I loved, which was running. That's usually the advice that I tell newly diagnosed women is whatever it is, if it's spending time with your toddler, if it's going out for walks at the beach, don't stop doing that. Keep doing that. That's important, because it helps define who you are and helps keep you sane really to keep moving forward with all this.

Alicia Larson:
I agree with that. I think the more things that you have that you can keep normal, so, for example, this may sound really silly, but putting on makeup on a day that I just feel like crud because of how chemotherapy is making you feel. It's a way, even though I'm not going anywhere and coronavirus has got us on lockdown, it's not for anybody but for myself, but it's a way for me to feel somewhat normal about myself when I look in the mirror, and I appreciate those little pieces of normalcy in my life right now.

Elizabeth Bella:
I would agree with that. Sticking to a routine, it has been said, sets us free. I love a schedule. I've been trying to do normal things, do all my work stuff at the right time. Do my work in a separate room than the kitchen area. Stick to normal eating times and keep up my exercise to the extent I'm able to do that.

So, Rebecca, you have been a great running inspiration to me to take up running and keep running. Through the course of my treatment, I have encountered part of my care team or caregivers that have said things like, "Oh, you won't be able to run. You'll be too tired." And to them I just say, "Okay." But I will keep going step by step, foot by foot, forward and get through this with as much of a feeling of normalcy as I can with all this other stuff going on around.

Rebecca Seago-Coyle:
Well, and I can say right before I was diagnosed, I met a breast cancer survivor and I told her, "I don't know that I know any survivors. How did you do it? What's your secret?" And she told me,  "I ran. I ran every day." And I thought, "Well, if I ever get diagnosed, I'll do the same just like that woman." I always think sometimes, not that we have to be a hero to anyone, but we can be an inspiration to others who are going through it, because if we can do these hard things, then that means everyone else can too.

One other thing that you both touched on was actually making this Facebook official or on Instagram, sharing this with your community, your friends and your family. Alicia, you said this was sometimes it can be a little taxing, and I also found that to be true. It's like when you start telling people that you have breast cancer, oftentimes you're having to comfort them instead of the other way around.

Elizabeth, I know you started a Caring Bridge site. What are some other ways that you're helping to share what you're going through so that again, you don't have to take that burden of comforting your friends and family?

Elizabeth Bella:
Yeah, I strongly experienced that where I feel like I'm a natural empath. I'm also a people manager, and I'm kind of a mother hen, and I love to take care of my people. So my first instinct was to immediately assure everyone like, "I'm fine, I'm fine. It's a good diagnosis. It's like the best one you could possibly have. It's great." But underneath it was a lot of my own fear, anxiety, worry going into it.

I did want to get information out to people. Reaching out and communicating some days it just seemed absolutely exhausting, like, "I can't do this. I don't have enough energy to reach everybody." But with the Caring Bridge, the approach I've taken is there's a good deal of humor in it, because that's how I like to approach things with some levity, some humor, some let's make a little bit of fun of ourselves and a have a laugh—nothing over the top. But that I found is very cathartic, if I can sit down and write an essay and write it for myself and write it for everybody and try to keep it fair and equitable and also stick in some scientific information in there. Because my background way back is biology and forestry, even though I do much more planning these days, I'm able to draw on my background of scientific writing and other things to express it.

I also feel like I've got a strong text group going and some Facebook friend groups that have been going for a long time that I'm able to share some of the more personal observations that I wouldn't necessarily share publicly. So, what is settling out to be is there are different tiers of communication. I have the group I reach out to kind of the public face and then the internal face and then my close friends that I can share more intimate-type or personal-type observations.

Alicia Larson:
I personally have just been more focused on what is strengthening to me spiritually, and that has brought a lot of peace and comfort for me. With that came communicating that spiritual strength that I may not have always done with my close family and friends. We talk about things at a deeper level and talk about things that I'm reading or writing or that inspire me at a spiritual level, because that brings me a great deal of comfort. When I share that with them, then they in turn can return that comfort back to me. So it's not just always me feeling like, "Oh, I'm trying to get them through this diagnosis as well," because it's one thing to get yourself through the diagnosis, but to pull your family through it as well that can be taxing like we said.

I just have been relying on things of a spiritual nature to strengthen me and others around me, and I do that as well on Facebook and on Instagram as well. I'm much more vocal about it than I used to be.

Rebecca Seago-Coyle:
Well, thank you both for sharing your stories, talking about what's been going on. It seems like we're representing the West Coast here from Alaska all the way down to California. It's really great that you guys are talking about these things, that you're also able to provide hope to other people—especially during this time. I know it's not easy, but we really appreciate you talking about this and actually giving some really great tips for some of our other listeners. Is there anything else that you guys would like to say before we wrap up?

Alicia Larson:
I don't think so. Thank you for having us. Thank you for allowing us to have a platform to share what we're going through. In a million years, I would have never placed myself here say last October. I think most women that have gone through this or are going through this say the same thing—that you don't think that it's going to happen to you until it happens to you. It's incredible that you have a platform that we can share our voice and that we feel like we're being heard, because I think some of that is also just feeling validated that, okay, I've got this. I can do this next step.

Elizabeth Bella:
Yeah, absolutely. I agree with all that. Thanks for the opportunity to join you. I will say that there are depths and strength within me and the community around me that I didn't know existed, that we are strong and resilient, and I know we will get through this, each of our individual paths and as a society.

Rebecca Seago-Coyle:
Yes. Very true. Well, thank you again for sharing and thanks for providing hope to our other breast cancer community members.

Please remember the opinions expressed on Patient Power are not necessarily the views of our sponsors, contributors, partners or Patient Power. Our discussions are not a substitute for seeking medical advice or care from your own doctor. That’s how you’ll get care that’s most appropriate for you.

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