Kicking the elephant out of the room, making time elastic, scary clowns and walking for a cure. Our breast cancer roundtable turns five.
Five years ago, my colleague Liz Bowen, who heads up the Corporate Social Responsibility program at Charles River, suggested we put a human face on our research, specifically our cancer research. That is how the breast cancer roundtable was born. As a science blog, we spend a lot of time discussing the latest and greatest in cancer research, but we don’t always think about the patients impacted by disease.
The roundtable helps keep this real for us. The discussions have circled around health insurance, treatment options, family support, clinical trials, the ever-present fear of relapse, learning to laugh again, and many other topics.
In addition to three of our roundtable regulars—Rachel Kiserow, Susan Desmond and Anita Roach—one newcomer Nancy Sullivan also shared her story. This year, we also brought back Brianne Carter from the Virginia Thurston Healing Garden Cancer Support Center in Harvard, MA, and filmed the 60-minute discussion there. And we included questions from other Charles River women in the discussion.
We hope you find the video as moving as we did. Below is a transcript of the discussion, which has been edited for space.
Susan Desmond, Associate Director, Events Management at Charles River in Wilmington, was diagnosed with breast cancer over 4 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 my body, namely her bones, she also had aggressive estrogen “shut down” via full hysterectomy.
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 two years ago underwent breast reconstruction. This is her 5th breast cancer roundtable.
Anita Roach, Executive Assistant based in Wilmington, credits a mammogram that she almost didn’t have with finding her breast cancer. In 2016, after missing her annual screening, she decided rather last minute to sign up for an appointment at Dana-Farber’s Mobile Mammography van, which was on the Charles River campus on Pink Day. The images revealed what ultimately turned out to be Ductal Carcinoma In Situ, where abnormal cells congregating in the milk ducts of the left breast. During a surgical follow-up, physicians found another lump in her right breast that appeared to be a cyst on the MRI, but was actually a Stage 1 tumor. Following lumpectomies in both breasts, Anita underwent seven weeks of radiation therapy and is now using Tamoxifen. This is Anita’s second year with the roundtable.
Nancy Sullivan, Executive Assistant based in Wilmington, was diagnosed with breast cancer 12 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. Triple negative tumors are notoriously aggressive and hard to treat, and by the time doctors diagnosed Nancy’s cancer it had already metastasized to her lymph nodes. Nancy’s children where young. “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, and as she has done for the past decade, plans to throw a party for herself.
Brianne Carter, Co-Director of Integrative Care, The Virginia Thurston Healing Garden Cancer Support Center and moderator of the 5th Annual Breast Cancer Roundtable organized by Eureka, Charles River’s science blog.
Brianne: Before we begin, can you tell me a fun fact about yourself?
Anita: Halloween is my favorite holiday. I love dressing up for Halloween. This year, spoiler alert, my husband are I are dressing up as evil clowns. If anybody wants to invite me to a party for Halloween I’m definitely going to be there.
Susan: I love R&B music… and I almost went to Whitney Houston’s funeral!
Nancy: I like to do kickboxing, I like to go and put on the gloves and pound the bag at class and walk away and feel relieved. It’s a good outlet.
Rachel: I love to cook, especially Filipino food, so I love to cook for people.
Brianne: For the fifth year in a row, Charles River Laboratories has been having this round table, where they recognize, honor and provide a forum inviting those employees who’ve experienced cancer to have a strong, open voice. What I would consider, kicking the elephant out of the room. Option one for Charles River Laboratories is to simply say, “We do biopharmaceutical research.” And yet, with this roundtable, they are going much deeper, acknowledging we are vulnerable to cancer. How do you feel about participating in this round table and other ways in which you, as an individual or the company itself, kick the elephant out of the room?
Rachel: If people want to talk to me about it, I’ll talk to them about it, I’m an open book. That’s resulted in other coworkers coming to me and asking me, “How did you know? What did you do? I’m afraid, I think I have a lump,” and walk them through it.”
Anita: Nobody really knows, from start to finish, what’s going to happen when they are diagnosed. It’s scary enough going to get a mammogram. After you get your results, it is like “What’s next.”
Brianne: That’s a very good point. A client recently said, “I walk out of my oncology appointment, and I think about her necklace, her shoes, what she was wearing. I forgot all my questions. I forgot all her answers.” There is some kind of forum that can only be had with who you spend more of your time with, which is your colleagues, your work family.
Susan: It is so true. When you are thrown in that and you are brand new to the cancer world, everything’s so overwhelming. I was so uneducated when I was diagnosed and now unfortunately I feel a little more educated. But as you suggested, bring someone with you and take notes.
Brianne: Which brings us to our next question. Once you kick the elephant out of the room, the next issue that arises is that people say the wrong thing, especially at the very outset, when you don’t even know how you feel yourself about this diagnosis and this experience. If you kick the elephant out of the room and say, ‘I’ve been diagnosed with cancer,’ often what you get are some pretty awful responses. What do you wish colleagues, family and friends would say and do in response when you’re having a rough time? Not just at the initial diagnosis, but anywhere along the way when you are struggling.
Anita: Nobody has to say anything. Just be there for the person, whether it’s “Hey, do you want to go get a cup of coffee?” or “Do you want to go just hang out and watch TV.” You aren’t going to catch anything, and people need the support more than anything else.
Rachel: When I was sick, one of our dear friends came to our house and just didn’t even say a work. I still remember it like it was yesterday. He came in and hugged me for a very long time. I cried and cried. The feelings were so raw.
Nancy: It doesn’t always have to be about cancer. Everybody’s life goes on, even ours after being diagnosed. Just treat us, just be normal, like you said on that card. We don’t want to know that your aunt passed away from breast cancer, that doesn’t help, just be positive and open to listening.
Brianne: How have you learned to ask for help, and more importantly, how have you learned to ask for help and feel comfortable receiving it?
Nancy: It took me a while, it really did. I feel like after I was diagnosed, where my kids were so young, I wanted my time with them, so I didn’t want people intruding. I had my sisters and a cousin who were constantly there whether I wanted them there or not. After my second chemo treatment, when I had to shave my head, I realized at that point I needed the support and luckily they constantly stuck by me and didn’t let me push them away.
Rachel: I think I share the same sentiments, but I’ve actually spoken the words a few times since being sick to my husband or to my children: I need help, whether it’s taking stuff up the stairs, to the kitchen or whether it’s grabbing groceries from the car.
Brianne: A Charles River employee from Portishead, UK wants to know from the group. What else helped you during your treatment and recovery outside of traditional medicine, particularly as it relates to health and wellness?
Susan: Support groups for me. Here at the Healing Garden, being with other people that have gone through what I’ve been through that can understand and truly relate.
Anita: For me, it was exercising, working out, trying to keep my mind active so that you don’t go down that little runway of what ifs.
Rachel: I volunteered to be the president of my child’s school PTO while in chemo. I needed to keep busy. I couldn’t just be in treatment and not do something. I remember having conference calls with the other ladies in the PTO board and in my chemo chair, and I said, “Okay, this is what we’re doing, here’s what we’re going to do.”
Nancy: I dove right into fundraising and did the three-day walk, and my own personal fundraising event that raised a ton of money. I walked with a bald head, and I was proud. I’m like, “I’m doing this. This is me.”
Brianne: Researchers have identified five different forms of posttraumatic growth—finding personal strength, gaining appreciation, forming deeper relationships, discover more meaning in life and seeing new possibilities. Have any of these been a growth point for you after having a cancer diagnosis?
Anita: After you go through something like this, you kind of slow it down and you look at every little small little thing that used to be too small for you to pay any attention to. Now you’re like, “Oh my God, look at what my dog just did. Look at outside, the trees are turning. Look at that beautiful sunset.” I just value that, and my family time, a lot more than I used to.
Nancy: I always had chemo on Thursdays and Friday was when I would go for my Neulasta shot, and the minute I had the shot it was head to toe pain and I was non-functioning for 12 hours. But I remember being in the moment, just lying in my bed, listening to my kids outside playing and hearing their laughter. It was one of those things that you grasp and you just hold on to.