TNBC Thrivers: Kelly Thomas

TNBC Thrivers: Kelly Thomas

    As told to Margot Adams by Kelly Thomas.

    My name is Kelly Thomas. I was 33 years old when I was diagnosed with stage three Triple Negative Breast Cancer. I don’t have breast cancer in my family, I didn’t test positive for a gene mutation, nobody knows why I got this. I was working in finance for 13 years in cash management and was taken from that to where I am today. 

    It’s really funny, I was always the kind of person that went to doctors appointments, you know your doctors tell you to do your monthly breast exams and I never felt anything. One day I sat on the couch and I folded my arms and right [near] my armpit, it felt like a golf ball. [It] popped up overnight. If I was old enough to have screening, it probably would have been found on a mammogram. [I] never felt anything. I always did my breast exams in the shower and checked everything. [I] made an appointment to see my gynecologist, it took me some time to get into there. She ordered a mammogram ultrasound. [I’ll] never forget walking into the mammogram place and they said, “Why are you here, you’re too young to be here.” [I remember] putting the gown on, feeling confident, and being like, “I don’t have breast cancer in my family.” That’s such a big misconception. It’s a hill that I’m going to die on.

    [The] majority of women with breast cancer have no family history and have no genetic link. Only 20% of breast cancer cases are people that have a family history of it. So it’s actually the ones that don’t have the breast cancer in their family that really need to be mindful of [it]. As soon as they did my mammogram I knew it wasn’t good. They were like, “The doctor doesn’t like what he’s looking at.” I just lost it. 

    I did 6 months of IV chemotherapy. Once I finished that, I had a scan that said I was a complete response which means that there’s no tumor there [and] all the cancer’s gone. With Triple Negative they do chemo first before surgery, just to see if the chemotherapy works. Triple Negative responds the best to chemotherapy and they refer to that as neoadjuvant chemotherapy. [I] had a double mastectomy 2 months later. At my double mastectomy they found out that I was not a complete response. There was breast cancer in 2 of 8 of my lymph nodes, but it wasn’t Triple Negative. It was starting to mutate and [had] started to grow estrogen. Cancer wants to live and kill you so it doesn’t like when you’re trying to kill it. So it fought back against the chemotherapy but the good part about it was [that] estrogen breast cancer is very slow growing so a lot of times they can find it at a very early stage. Since I was not a complete response at surgery, my oncologist put me on an oral chemotherapy for another 6 months. [In total] I did about a year of chemotherapy. I actually stopped working the day [of] my first chemo. I’ve just been on social media, sharing my story [since then]. Basically, I could not fulfill the job that I was doing, plus my oncologist had strict rules that I could not work. I was on a regime called ACT plus carboplatin and carboplatin is a metallic based chemotherapy and it will completely annihilate your white blood cells. So it was really important that I didn’t get sick because if you get sick you can’t get treatment. 

    Going to the grocery store I had a mask. There was a town fair and I had to mask. It stunk being bald. I had no hair on my body, no eyebrows, no eyelashes. My face was the size of a football field. I dropped 60 pounds just to get healthy so my cancer would not come back. Women who are overweight at diagnosis do have a poorer prognosis and their cancers are more likely to come back. So, I wasn’t working because I was on really hardcore stuff. Drugs that they wouldn’t give to your grandmother because your grandmother probably couldn’t survive it. They were like, “You’re 33 years old, we think you’ve got gas in the tank to take this on.” [It was a] year and a half of treatment that I was on and I’ve been cancer-free ever since. 

    Like everyone else, I had an Instagram. I really loved writing and journaling and I really wanted to be a journalist when I was in high school so when I had this diagnosis, [the] 2018 breast cancer community online really wasn’t what it is now, and, to me, I wanted to show my friends and family what it was like to be 33 years old with the most aggressive form of breast cancer there is. Whether this ends positively or not, I just wanted to show everyone what my journey was like. It was also very therapeutic for me just to write and be like “this is what happened.” I shared the good, the bad, the ugly. [I] started videoing and taking photos. 

    It’s one of the things [where] you think breast cancer is breast cancer until you have it. So there’s not just one type of breast cancer out there, there are hormone positive breast cancers, and then there’s Triple Negative. If you test positive for a hormone [and] you come back with estrogen positive breast cancer, there’s a drug to target that. Or if you have something they call a Her 2 factor, which is a growth factor, there’s a drug to target that, but with Triple Negative they don’t really know what’s fueling your cancer and, in cases like me where I have no family history, no genetic predisposition, they really don’t know why I got it, how my cancer is really fueling. It gives me limited options.

    Like I mentioned, I shared my journey and one day I got on the radar of the Triple Negative Foundation. I struggled to find community online and I created an online community called “TNBC Thrivers” where I share women living and thriving with TNBC because, as a woman that was diagnosed with TNBC, if you Google Triple Negative Breast Cancer it tells you that you should just plan your funeral right now. It’s known as the “kiss of death” breast cancer [because] we have the highest recurrence rates and the lowest survival rates of all breast cancers out there. It’s very grim. (especially in 2018). People that make it through don’t talk about their stories and their journeys, you only hear the bad things. It’s kinda like looking up restaurant reviews. You always see the terrible, “my food came out cold” and “there was a hair in my soup” but it’s like, if you go out to a restaurant and have a phenomenal time, are you really going to go home and run and write a review. No. 

    In my heart I’ve always been a very positive person. I was like, there’s gotta be people living and beating this disease. I just need to find them and I need to get their stories and I need to post them on the internet so that the next Kelly Thomases that get diagnosed can see that there is hope. There is hope in stories. That’s the big thing. We hear a lot about statistics and that can really weigh us down. I was given a 55% chance that I would see today. The statistics are one thing, but real stories are totally different. So, I created TNBC Thrivers. 

    Fast forward to Covid, I started having my own zoom chats. I’m a very outgoing person and I love going to conferences and meeting other survivors and Covid put an ax on that. The next best way to chat with people, especially newly diagnosed people, was zoom. I would get on my stories and I would tell people. Whoever wanted to chat. We’d call it Thriver Thursday and we would chat and have fun.

    The TNBC Foundation saw that I was doing that and they were like, “You should do that for us.” So I became their online chat host. I am good friends with one of the board members, Melissa Berry. We linked up and started doing TNBC Day. I helped them with their ambassador program so my hand is very deep in the Triple Negative community online and I can tell you everything about any person that you find on the internet. This year was our third year of influencer ambassadors for the Triple Negative Foundation where we send them merch and we have them post three things that they wish they knew, or someone newly diagnosed with TNBC. It’s just a really awesome, wonderful community. There’s nothing like the Triple Negative community, partly because it is such a scary diagnosis and we do hold on a lot to each other, but it’s a sisterhood like none other. 

    [The support group] is so much more than that. We don’t just talk about cancer or whatever, we talk about real life things and life after cancer. People don’t realize, a lot of us get double mastectomies or lumpectomies or some sort of surgery and it’s like, you can’t just get a regular bathing suit after breast cancer. It’s a whole thing. Breast cancer doesn’t end when breast cancer ends and there’s so much support. There are girls who are diagnosed in their mid 20s or early 30s, like I was, and I was lucky enough to be married. But, [for example] dating. How do you tell someone your boobs are fake or you don’t have nipples or that you had cancer? That’s a heavy conversation. 

    The group is really really amazing and we all support each other. We talk about all that, the good, the bad, and the inbetween. Life after cancer is such a special piece, and this is the other piece of the puzzle: this isn’t your grandmother’s breast cancer, this is young breast cancer. Our concerns are a little different. Your grandmother may have had cancer but they’re having mammograms, they’re probably married, they probably had all their kids and their kids are probably having kids at this time. We’re not. Young women, we are finding our cancers later and higher staged because there is no screening for us. The only thing that we can do is know our bodies, promote self breast exams and, even then if we feel something, there are doctors that will say, “You’re young, there’s nothing wrong with you.” It’s like, no. I always say in my chats that I don’t think it’s ever a good time to have breast cancer, but I’m so grateful that I had breast cancer when I did [because it was during] the time of social media. I think pre-generations, my mother’s generation and my grandmother’s generation, I don’t think anything that’s going on right now is new, but we are the generation talking about it. It needs to be talked about. 

    It’s been a ride but an honor to be on this side of it. I’m a survivor like anybody else. I can have off days. I actually had a coughing episode in 2020 and I thought, “My cancer’s back, it’s back in my lungs.” [It] ended up being radiation fibrosis, which is very common with women that have [had] left-side breast cancer that get radiation. Every time I do have a random cough or a cough that lingers for more than two weeks that throws me right back. It doesn’t matter if you’re newly diagnosed, freshly out, or years out, the breast cancer community is so important and the TNBC community is amazing. Sometimes I need as much support as the next person.

    Article by:

    Gina Kuyers

    Gina Kuyers is the founder of Luxeire. The idea for Luxeire came out of founder Gina’s frustration with the discomfort and high maintenance of beautiful clothing. With a 20-year career and PhD in school psychology, Gina spent decades applying research to real-world problem solving. She brought these well-honed skills to designing and producing a line of elevated wardrobe staples.

    Gina grew up in West Michigan where she attended Calvin College graduating with a degree in education. She continued her education at Fordham where she received her PHD in school psychology. Gina and her husband, David, have four adult children and live in New Jersey—just a short ferry ride from the Luxeire studio in New York City.