Patient Stories
Regina Kelder

Cancer in the Time of COVID

Our breast cancer roundtable gathers for the sixth year, virtually of course, to talk about the high and lows of living through a pandemic 

Living with a cancer diagnosis is familiar territory for the Charles River Breast Cancer roundtable. They have weathered surgeries, chemo and radiation treatments, and the work and family disruptions that cancer causes.

So you could say that navigating COVID-19 is familiar territory. Certainly they know what it is like to have your world turned upside down. But COVID has also brought new worries about exposure to a deadly virus—having cancer automatically puts them in a higher risk group. And it’s caused disruptions to their cancer follow-up. 

The Roundtable

Susan Desmond, Director, Events Management at Charles River in Wilmington, was diagnosed with breast cancer over 5 ½ years ago. She underwent chemotherapy, a mastectomy, radiation and breast reconstruction. Her tumor was estrogen receptor positive, so she also takes hormonal therapy every day. Because her cancer was stage IV, meaning that it had spread to another part of her body, namely her bones, she also had aggressive estrogen “shut down” via full hysterectomy. This is Susan’s 6th breast cancer roundtable.

Rachel Kiserow, a Senior Human Resources Representative at the Safety Assessment site in Reno, was 35 when she was diagnosed with breast cancer. Surgeons initially performed a lumpectomy but when the tumor turned out to be larger and seemingly more aggressive than expected, Rachel had seen enough. “I told them to take them both,” she said and underwent a double mastectomy in 2012 followed by chemotherapy and radiation. Then, in 2014, she underwent a full hysterectomy and oophorectomy since she was at risk for uterine, ovarian and cervical cancer. She is currently taking the hormonal drug tamoxifen and several years ago underwent breast reconstruction. This is Rachel’s 6th breast cancer roundtable.

Nancy Sullivan, Executive Assistant based in Wilmington, was diagnosed with breast cancer 13 years ago when she was 38.  She found a .8 millimeter breast tumor during one of her routine breast self-exams. Doctors told Nancy she had triple negative cancer, which means the tumor tested negative for estrogen receptors, progesterone receptors, and excess HER2 protein. These are very tough tumors to treat. By the time doctors diagnosed Nancy’s cancer it had already metastasized to her lymph nodes. “My goal was to see my son play high school sports and he just graduated,” says Nancy. “It makes me emotional every time I think of it.” Her “cancerversary” will be in January, This is Nancy’s second year with the roundtable.

Brianne Carter, Co-Director of Integrative Care, The Virginia Thurston Healing Garden Cancer Support Center and moderator of the 6th Annual Breast Cancer Roundtable. This is her third year moderating the roundtable.

The Conversation

Brianne: The topic of the roundtable this year is framed around cancer in the time of COVID. Could you share a brief update using these three components: a rose for an achievement or success or something positive that has happened since we saw you last year, an obstacle or challenge that you could use more support with, and a bud—something you are looking forward to.

Nancy: Nice to see you again and hope everybody's staying healthy. An achievement over the last year was I was actually able to sell a condo that I was holding onto. It was a little bittersweet to sell it but the timing was perfect. An obstacle this last year…I lost my mom in January. I was a pretty big caregiver in her life and now I have a void. I still go to call her or to pick up her favorite things, only to realize she’s not there. 

Susan: A rose this year is getting through COVID… specifically adjusting to virtual doctor appointments and getting the outcome that we still need from that platform. I would say that’s been a success. An obstacle? COVID again. I didn't realize how much I missed hugging people, which has always been a kind of therapy for me. 

Rachel: I can completely relate with what Susan was saying about touching people. I've

Rachel Kiserow and her family
Rachel Kiserow and her family.

mastered the art of air hugs, and when I see folks it's just so unnatural not to reach out and either touch or hug or shake hands at the very least. So that's been a challenge. Also a challenge is working from home and dealing with children at home, going to school, distance learning. And now we have the smoke from the fires (West Coast forest fires), so we've had a lot of school cancellations, a lot of uncertainty. Fifteen, 20 years ago I would have freaked out, but because of all the life experiences, especially having gone through cancer, I’ve become more flexible. 

Brianne: How has telling your story through this forum provided a way of healing or empowerment for you?

Susan: Sharing my story and talking with these other wonderful people has reminded me I'm not alone. Even though I'm so many years out of being diagnosed, it's still something that I live with. The more I can tell, the more I can listen, the more I can give.

Nancy Sullivan
Nancy Sullivan

Nancy: I think we all feel the same exact way that Susan feels. I was able to learn from other women that were in chemo the same time I was. I remember women would just show up in the waiting room, and someone would ask ‘Anybody trying ADCs (antibody drug conjugates)?’, or another would talk about radiation scarring. So it’s nice to be able to just give back. I have two girlfriends that are close to me that are Stage 4 breast cancer survivors.

Rachel: Folks I may not have ever talked to intimately before feel OK to come to me because they heard about the roundtables. I think it’s amazing that the door is open. For me, it’s been great to be able to tell my story and to hear all of your stories. There is something absolutely therapeutic about this.

Brianne: To be that voice and to have that story is a powerful experience for people listening in your

Brianne Carter, Breast Cancer Roundtable
Brianne Carter

organization and for people like me. It’s pretty amazing. 

Psychiatrist Scott Irwin, Director of the Patient and Family Support Program at Cedars-Sinai Cancer Center has stated that cancer patients and survivors had a lot to deal with before COVID-19 began. Now the stress of coping with a chronic condition, and the threat of catching the infectious respiratory illness is creating additional anxiety for patients. Have you found twofold levels of anxiety, and if so, how has it impacted your health and your decisions? Have you learned to identify red flags for when your anxiety is making your decisions for you and what have you done in response to mitigate your anxiety. Big questions.

Rachel: I think I’ve mentioned that I catch everything in sight, whether it’s the flu or whatever. So there was that horrible anxiety of, ‘Oh, my goodness, if I do catch COVID am I going to be the one in the hospital? And how would it impact my family? There were these really deep anxious feelings inside. My husband and I just tried to research as much as we could; listening to our leaders at Charles River helped a lot. I think I got to the point where I was like, let’s just do the best we can. Let’s try to be smart and we’ll get through this. Those are the kinds of things I told myself and it definitely helped.

Nancy: Where I am, 10 years out from cancer, my anxiety has definitely diminished over the years. But I think once COVID hit, and the stay-at-home orders were issued, the anxiety set in. I consider myself to be pretty healthy but I honestly don’t know how my immune system would feel if I happened to catch COVID. It’s that unknown that worries me. Am I strong enough to fight it off? Do I have any underlying conditions that might still make me weak and cause me to experience some of these awful side effects that people are dealing with?

Susan Desmond
Susan Desmond

Susan: When we were quarantined, I took some comfort in knowing I wasn’t leaving my house. It was scary, but I also felt a little comfort in knowing I wasn’t leaving my house, that I couldn’t catch anything. But then I began to venture out. I was definitely taking precautions—mask-wearing and sanitizing—but when I would go into a store I found myself walking out if it felt too crowded.

Brianne: In the new medical work, what additional challenges have you experienced in managing the current telehealth medical system. Have you experienced delays in scans or treatments due to backlog or triage by your medical team?

Susan: I have had some video appointments with doctors and I was pleasantly surprised. I got some good outcomes from that. I was concerned we’d have a conversation—oh, you still need to come in—but we were able to get a positive result just by video conferencing.

Nancy: I actually had a scan in August, and I will say, because they keep the office space limited, it ran like a well-oiled machine. You do your scans and meet with your doctor. It’s nice to go to the doctor and not have to sit in a room with 20 other women, who are all waiting for the same things you are waiting for. There was much less anxiety. So hopefully they can continue to maneuver things this way, because it’s scary going in for scans, everybody is looking at you and you’re thinking, is she me? Am I her? Are we in this? It was much less stressful this time.

Brianne: Was your scan report tele-health delivered?

Nancy: No, I’m lucky. I wait and they read my scans right away. I know before I leave what the results are, and I meet with my breast surgeon before I leave. I had good news too, everything was good this time. No clips. 

Brianne: Yeah. And only we would understand what a clip is.

Rachel: I haven’t experienced any telehealth issues. I actually was able to see my oncologist for my regularly scheduled appointment in person. Everyone else had  passed up and there weren’t a ton of people. I have scans that I need to do in November so we’ll see about that then.

Brianne: I wonder how much COVID is going to change the approach going forward in the medical system, because maybe you shouldn't sit in a room full of others waiting for your scans for about an hour and a half. Maybe that's not best practice anymore, not just for emotional reasons but also for physical health reasons. It's very interesting.
During this catastrophic time, how do you engage in a practice of gratitude? Or if you don't have a regular practice of gratitude, what could you name that stands out as something you're particularly grateful for during this time?

Rachel: I’ve been trying to at least sit outside for 10 minutes in the fresh air, not a formal meditation but just reflecting, and a lot of those reflections mirror gratitude.

Nancy: Every morning my sister and I walk three to four miles a day. I come home all sweaty and get online and start my work day. It doesn’t matter. I’m so grateful for that. I’m also grateful for the opportunity to spend a bit more time with my kids one-on-one or in a group. I very rarely wake up in a bad mood, and when I do I recognize it and say ‘Just go for a quick, 15-minute walk, clear your head and start your day all over again.’ Honestly, I’m just thankful for being here.

Rachel: During COVID, we have probably 90% of our dinners together, which is pretty unheard of for my family. I’ve cooked a lot, which I love and don’t love at the same time. Over time, I know I’m going to look back on this as something meaningful. I’m listening to my children more. I’m hearing their stories more and I’m understanding a lot more of what they’re going through as teenagers. I don’t think I would have been able to do that in the normal, fast pace of life. I think my children will look back on this time and think, wow, that was tough but it was really great at the same time.