What’s it like to get diagnosed with breast cancer at age 28? It’s as bad as you might imagine. But there are some unique challenges associated with being diagnosed at such a young age that you might not think about. To start, most people I interacted with between finding my lump and getting diagnosed thought I was way too young to have breast cancer. They didn’t take my lump seriously, repeatedly telling me there was nothing more I needed to do. I felt a bit crazy, like I was just too obsessed with the lump being breast cancer when in reality it likely wasn’t. Having a PhD in cancer research and being told the story of my aunt’s diagnosis at age 17 only made this drive to investigate it even more intense. Even my family thought I was a bit crazy, but I could not shake my unsettled feeling. I had to keep pushing, harder than I expected I would have to.
I talked to as many medical professionals as I could that would listen to my story. And I think we can all agree that it takes a lot of courage to stand up to medical professionals. Even with my background, I often go into a doctor’s office with a list of 10 questions, ask the 3 easiest and tell myself I’ll save the rest for later (which never happens). This is true especially when the questions are deeply personal or related to reproductive health. But this time, I knew I couldn’t do that. The stakes felt too high, the consequences too scary. It’s scary and hard to advocate for yourself and not all medical professionals make it easy to speak up. It turns out, a year and a half out from being diagnosed with stage 2 breast cancer, I’m definitely not too young to have breast cancer and I don’t have any known genetic mutations that would have predisposed me for this disease. So here it is: the first crappy thing about being young with breast cancer is that getting diagnosed can be a challenge. And the scariest part is, I’ve heard so many other young women tell the exact same story as me. Weeks and months go by with the cancer growing inside you while you’re repeatedly told it’s nothing. I was fortunate that with my background, I used my knowledge to push hard and fight to get the answers I needed, but not everyone does. And really, no one should have to.
Ok so now you’re 28 and you have breast cancer. What happens next? You’re bombarded with life-altering decisions. The clock is ticking and you have to make these decisions in a matter of weeks. A huge one for me was whether to have surgery or chemo first. This decision would directly impact another big decision: having children. If I chose to do surgery first, I’d be able to squeeze in an egg harvest before starting chemo, allowing me to preserve my fertility. If I chose chemo first, I would not be able to freeze my eggs, but we would have the advantage of being able to monitor my tumor to see how responsive my tumor was to the chemo and make changes if necessary. So what this came down to was one key question - do you want to have kids? I’m not married, divorced actually. I am dating a guy, and at the time, we had been together for less than a year. I guess I always assumed I’d probably have kids but I’ve always been very career oriented so I hadn’t spent much time thinking about it yet. Most women with breast cancer have already had kids if they’re going to have them. Yet, here I was, left to make this life altering decision with no time to spare. “Hey guy who I’ve dated 10 months, assuming we get married and have kids, how many do you think you’d want? Ok great, now on to deciding chemo regimens.” That’s pretty much how it goes. And to top it off, since I’m a scientist, I felt that I had to read every study published in the last 10 years about treatment of breast cancer to feel confident in my decision. Again, back to feeling like I’m annoying my family and my doctors by going back over the stats and pro/con lists a hundred times, living in so much anxiety about this life altering decision.
“Hey guy who I’ve dated 10 months, assuming we get married and have kids, how many do you think you’d want? Ok great, now on to deciding chemo regimens.”
So now that we’ve talked fertility, relationships, and making totally overwhelming, life-altering decisions in a matter of weeks, what else do young women with breast cancer face? Well, there’s the impact treatment makes on our careers. We don’t have long-established careers. It’s quite the opposite, actually. In fact, for most of us, we’re just getting started. I was 1.5 years in to my first job, since I spent the early half of my 20s getting my PhD. I had landed my dream job, hired my first employee, and there I was, being told I would have to miss significant chunks of time at work. I was assigned one of the most challenging and crucial projects in my group and couldn’t be there to make progress on it. The deadlines around it weren’t going to change but I couldn’t be there. So all throughout treatment, I worked hard to maintain as much of an involvement in my job as I could, often taking the first or last appointments of the day and spending all of the time in between at work. It was not that my job didn’t support my leave or my manager wouldn’t let me take the time. It was that I didn’t want cancer to get in the way of my blossoming career. Cancer was already taking my breasts, my hair, my fertility, my strength. I wasn’t going to let it take something I had worked so long and hard for. Working throughout treatment was exhausting, both mentally and physically. It drained me, but it was the one thing that kept my life feeling somewhat normal. I was happy when I was at work and could spend a few minutes forgetting about ‘cancer me.’ Was it worth it? Absolutely because I earned a promotion this year and I’m so proud of the progress we made on the project. Was it the hardest thing I’ve ever done? Absolutely.
So now that the tough decisions are done and we’ve worked really hard to maintain our lives and our careers throughout treatment, how do we feel? Mixed, very mixed. I’m relieved to be cancer free, but that came at a price. Imagine this, you are a young, single woman with a rocking body from running marathons. Your hair is thick and long and your brows are fluffy (the kind of fluffy people pay lots of money for). Enter cancer. Over the course of treatment, you lose all of your hair, your muscle tone, and your bone density (among many other things). Essentially, you aged 30 years in the span of 1 year. For me, I was ok with them telling me I had to lose my breasts. They actually offered to just take one boob and I told them to take both, without any hesitation. I didn’t want one real boob and a higher chance of recurrence. But when they told me I had to lose my hair, I couldn’t cope. I always had long hair and, like many women, I felt it was a part of my identity. I knew if I lost my hair, I’d look like a cancer patient and at the time, that seemed like the worst punishment of all. Take my breasts, my energy, my fertility, but please don’t take my looks. I know that sounds vain, but I was 28! What 28-year-old doesn’t care how they look? The idea of wearing scarves or wigs was mortifying. What would people think?
I have 1 really striking memory related to my hair loss journey. I had been feeling pretty bold as I prepared for hair loss. I buzzed one side of my head, then my whole head. I felt a bit like GI Jane. Then my hair started to fall out after a few rounds of chemo so we decided to shave it clean. My dad did it and we cried together the entire time he was doing it. I was completely torn apart inside when I looked in the mirror. It was the first time I didn’t recognize myself. It was an out of body experience, like someone else was looking back at me. My clothes had stopped fitting well. A skeleton of me was there, but that surely was not me. After that moment, I stopped looking at myself in the mirror at all. I tied scarves, but I felt it was obvious I was bald under them. My face was puffy. My nails fell off. I felt hideous. I didn’t even have the energy to try to look better. On days I did try, it was even more disappointing because I still felt ugly, and it was as if there was no hope for me at all. It wasn’t until I started finding other women with breast cancer online who were rocking bald looks that this feeling of not wanting to look like a cancer patient changed. I couldn’t change my circumstances, but I could change my attitude and approach. Being bald started to feel empowering.
On days I did try, it was even more disappointing because I still felt ugly, and it was as if there was no hope for me at all.
The hardest thing I have had to deal with as a young cancer patient? Isolation. This becomes obvious in waiting rooms. As a cancer patient, you practically live in waiting rooms (as I’m pretty sure you spend more time in them than at home), and your companions are all at least 30 years your senior. People look at you strangely and assume you’re the daughter or granddaughter. That is, until you lose your hair and then you get even more strange looks. Not long after getting diagnosed, I remember starting to feel really strongly about the way breast cancer is portrayed. Breast cancer is defined as women in pink in their 60s doing walks, smiling and laughing with their friends. I was so angry at this stereotype because first of all, it’s not happy or fun by any stretch of the imagination. And we aren’t all 60. But that’s what it felt like sitting in those waiting rooms and that’s all I knew during my diagnosis and early treatment. You feel totally alone. You feel totally isolated. I was mad at the world and everyone that was healthy. Yes, that sounds totally irrational, but it’s how I felt. I desperately needed community. I desperately needed to know if there were any other young women dealing with all of these losses that could relate to me.
There are so few of us that I couldn't let her go. I needed her in my life.
I remember one day at the cancer center I was waiting in line to check in for an appointment. I noticed another young woman in line in front of me. It was like I saw a celebrity. I got so excited and nervous. I was desperate to meet her. I watched for a few minutes, confirming she was the patient, not the daughter or granddaughter. I noticed her looking at me, too. She actually ended up speaking to me first. We became friends instantly, asking each other questions about treatment plans and reconstruction types. We parted ways and I regretted not finding a way to connect with her. I ran back over to her and asked for her number. There are so few of us that I couldn't let her go. I needed her in my life.
Young women need a voice in the breast cancer community. We need each other. I have so much life I want to live after cancer. I'm not preparing for death. I'm just getting my life started. I have so much I want to see and do and experience. Hell, I have eggs in the freezer I hope to thaw one day. But for now, I'm going to keep trying to live as a young woman, one that is not too young to have had breast cancer.