science of us

My Life After Getting Breast Cancer in My 20s

I was diagnosed with breast cancer in the summer of 2015, right after I turned 28. I had a place with some of my best friends, and was partying a lot, and trying to date, and just kind of living a standard, 20-something person in a city’s life. I was enjoying myself! But I’d been feeling pain on the right side of my abdomen for three weeks or so, and it wasn’t going away. I got an endoscopy and an ultrasound and both looked fine, so nobody could really figure out what was going on — until one day, when I woke up and my left armpit was hurting, which I knew was a warning sign of something bad, breast-wise. So for the first time since probably high school, I did a self-exam, and found a pretty big lump.

I’ve always been kind of a hypochondriac, so it wasn’t unusual for me to be anxious about whether something was going on with my health. But weirdly enough, at that point, I was pretty calm. I thought maybe I had some sort of blockage, like mastitis, so I wasn’t actually too worried about it; I just didn’t think the worst was possible. I remember saying to one of my co-workers the next day, “I’m going home because I found a lump, but it’s not a big deal.” I really did believe it! And my co-worker was like, “I’m sure it’s nothing. You’re fine; I’ll see you this weekend.”

I went to my parents’ house in Connecticut, and my mom took me to see a breast specialist. The doctor didn’t have much of a bedside manner; she pretty immediately was like, “This is not okay, and I’m sending you to Norwalk Hospital to get it checked out.” So we went, and I really started freaking out during the ultrasound, because the tech who was doing it got really quiet and left the room. That was when I fully realized that something bad was happening. By the time the tech came back in with a doctor, I was in full-on panic mode, crying.

The tech and the doctor looked at the ultrasound together, then felt around and ordered a biopsy, which I think ended up happening the next day (this time is sort of a blur for me; there was a lot of Xanax involved). At that point, my boob was so swollen that it was painful to even have anything touching it, and it’s not like they put you under for the procedure — they tried to numb me a bit, but it didn’t work very well. I had a towel to bite down on, which felt very medieval. Afterwards, my mom and I tried to distract ourselves by going to the aquarium.

At the hospital, they said they’d be in touch the next week with my results. But that night, the breast specialist I’d seen originally called and said, “Look, there’s no easy way to say this, but we think you have cancer.” It wasn’t 100 percent confirmed; she said we’d get the official diagnosis soon, and go from there. I think she was trying to prepare me, but it was kind of a misguided attempt. I got sick, and started screaming, and called my therapist to tell her I was going to die, and sort of blacked out for several hours; Valium ended up being the only way to stave off this huge, overwhelming panic attack.

All weekend, my parents were trying to do these soothing, normal-person activities with me — go to a farm, walk in the woods — but I was so out of it. At the beginning of the next week I said to my mom, “I wonder when they’ll call me to give me the final results.” And she told me they already had called; that it, for sure, was cancer.

That was the last week of August. I went back to my apartment and packed a couple of suitcases, and then moved back in with my parents while we figured things out; thankfully, my job was really understanding. I’d started going back to the hospital where I’d had the biopsy, but then my insurance recommended Dr. Chau Dang at Sloan-Kettering, who specialized in my exact kind of cancer — HER2-positive. At first I was told, “We’ll do surgery, and then we’ll see if you need to do radiation, and we can talk about implants or whatever you want to do. It will be fine; you’re only at Stage I.” So I was like, Okay, Robin, calm down. It’s nothing! I remember making some joke about getting a new pair of boobs.

But then I had my full-body PET scan, so they could see everything that was affected, and the cancer had spread to my liver and spine. The liver was what had been hurting on my right side. So there was a jump from this idea that I had Stage I to understanding that I had Stage IV, though that wasn’t immediately clear to me. At some point I offhandedly mentioned to Dr. Dang being at Stage I, and she explained that because the cancer had metastasized, I was actually at a much more advanced stage. So it was decided that I shouldn’t have surgery; instead I’d get a kind of chemo called Taxol and also Herceptin, which was a new medicine that she had helped create.

The treatment was done in several rounds over three, three and a half months — first Herceptin and then the chemo drugs, then just chemo the next week, and then chemo the third week. Leading up to treatment, I was feeling horrible, like my body was falling apart. Everything hurt. (Did you know your liver has nerve endings? I didn’t until my liver biopsy!) But then the first day of my treatment they gave me this megadose, which took nine or ten hours. The day after, I felt amazing; everything that had been hurting, stopped hurting. I think it was the steroids.

After that, it became less enjoyable. The side effects were everything you’d imagine; I got a lot of rashes, I was nauseous, the list goes on. Within two weeks my hair started falling out, and then it was so painful that I had to buzz it. But the worst part for me was probably my skin’s reaction; that stuff is so poisonous, it gave me boils all over. I was also losing a lot of weight, and while I felt like I was dying, I’d get a lot of weird compliments from other people about it. People who knew what was going on! They’d be like, “Oh, I know being sick sucks, but you look great!” Um, thank you? My body is failing? That was so gross to me.

From the day I got my diagnosis until the end of treatment, I didn’t really cry; I was in this state of permanent of disassociation, this prolonged out-of-body experience. I probably didn’t go longer than a minute for the first month without asking someone in the vicinity if I was going to die. They sent someone into my hospital room one day to help me draft up my will; I picked out what I wanted on my grave; I had to think about potential palliative care. And I was so reluctant to do any of it, because there was no part of me that was at peace with dying so young; I was really angry. I made my mom promise she’d tell me if she knew I was going to die, and she was like, “I probably wouldn’t just say it to you; maybe I’d ask you to pick your three favorite vacation spots, and then we’d go there.” Way to ruin the surprise!

But then, at a point, I became really reluctant to even talk much about death; I’d decided continuing to talk about it would make it real. I went to a few support groups, but they were so uncomfortable. I was always the youngest person by far, and it seemed like everyone else was in a totally different headspace. I needed a distraction, but I’d go to these meetings and people were indignant about death, really sad and depressed, which was totally understandable — I just couldn’t handle it. My sisters spent a lot of time at home with me, because I couldn’t be alone.

Having cancer as a young person is alienating. I ended up meeting people around my age by bumping into them at the hospital, or by one of us finding the other on the internet. I found the Leo With Cancer blog, which was super helpful, and I remember sharing an article called “Everything Doesn’t Happen for a Reason,” by Tim Lawrence of The Adversity Within, with, like, everyone. My friend who works for Amy Poehler’s Smart Girls saw me posting about my illness, and asked if I’d be interested in writing something for the site. That ended up turning into a series, which was great because a lot of people responded to it and got in touch. Writing has been a really rewarding part of this; it allowed me to relate to and connect with other people.

When I went in for my “halfway through chemo” checkup, I learned I was in remission; that the cancer cells had shrunk so small, they no longer showed up on a PET scan. Dr. Dang had always seemed more confident than I was fully able to appreciate, but it was then that she told me she wasn’t worried at all anymore, and that I shouldn’t be either. I just celebrated my two-year remission anniversary. I still go in for treatment every three weeks, but it’s not chemo; just immunotherapy. It’s usually about a four-hour day. I go get labs, and then the doctor or nurse examines me, and I get my IVs. Eventually they plan to space it out more — maybe every two or six months, and I’ll only have to get a PET scan once a year.

Things are okay right now, in theory, but still kind of terrifying. If anything, my hypochondria is worse, because I’m like, “See? I was right!” It’s hard to trust my body — what are my cells going to do while I’m not paying attention? I’ve had a few things that make me panic — I randomly throw up, or start bleeding off-schedule, or get a weird pain — but thankfully my hospital has a 24-hour support line, so I can call whenever and talk to a nurse who will tell me what to do. I like to have directions.

I still have nightmares about what happened to me physically. I struggle not to touch my hair all the time, to make sure it’s still there. And gaining weight back after chemo was exciting at first, but then less so because I had other people’s voices in my head — the ones who gave me the idea that I wasn’t going to look as good as when I was in the middle of treatment. Ultimately, I feel really lucky that I didn’t end up having to go through surgery, even though at the beginning I’d felt like, “Just get it out of me!” I’ve dealt with my share of body-image issues, but I imagine surgery would have made things so much harder.

My relationships have also changed; being sick shifts everything. I think my illness was really stressful on my parents, being caretakers for their adult child, and my sisters are obviously at elevated risk. My aunt recently passed away of leukemia, which was especially tough because when I first got diagnosed, she helped me out a lot — even though she’d lost her own daughter not long before to bone cancer, and I can’t imagine how difficult it was on her. And meeting other people around my age with cancer who I could talk to had been so great, but the flip side was that many of them ended up dying. I think constantly about why treatment works for some people, but not for others. I have a lot of guilt around it.

That said, I’ve at least started to enjoy having a drink again, and eating foods that I love, and having my hair back! I didn’t start dating until it had grown back a good amount, because I was too nervous to go out and have someone discover I was wearing a wig. (Though, I definitely still wear my wigs from time to time. Not fancy ones; like, long pink ones from cosplay websites that make me feel like Lady Gaga.) A few times, I told people on the second date about being sick, and they got scared. I even broke up with someone last year who only afterwards told me how anxious the whole thing made him. Like, I’m sorry this was so hard for you! I’ve realized my best bet is to be as up-front about it as possible — not waiting, even for a short time, and letting it become a thing.

I got so used to imagining myself as someone who was going to have a shortened life, that it can still seem like I’m on borrowed time. The further I get from having received good results, the more nervous I get; the closer I get to going in for more tests, the more nervous I get. I’ve asked my doctor a million times if I’m going to have a normal life, and she’s always like, “Yeah, you’re going to live for 30 more years minimum; you’re going to be fine.” And maybe this is wishful thinking, but I feel like she’s not allowed to lie to me.

If I could give someone going through a similar illness any advice, it would be that while it’s wise to avoid Googling symptoms and diseases as much as possible, the internet can be great for finding others who are going through what you’re going through. You’re not alone. Stay positive, find your people, ask for help. And it’s okay to take a Xanax once in a while.

My Life After Getting Breast Cancer in My 20s