Never too young: Metastatic by 29

“It’s probably just a clogged milk duct. Nothing to worry about.” Those were the words that started my cancer journey, a week before my 23rd birthday.

A month later, I was sitting in a breast surgeon’s office, next to my mother, looking at images of tumors in my left breast and going through my options. I told my surgeon “Take them both out.” Nothing to worry about had turned into something big and I didn’t want to go through cancer again. In my mind, no breasts meant no breast cancer.

Adult decisions

I met my plastic surgeon, my physical therapist, and my radiologist that same morning. I left those first appointments and I chatted about how cancer may not be the worst thing to happen to me. I didn’t need radiation, I was getting the bigger chest that I’ve always wanted, and I had a work out plan that was going to keep me in shape.

My team was pushing how this was the body I would need to live with forever and they wanted me to love it. I didn’t know how right they were in that moment but I’m forever grateful to them. I just knew that in a year I would be back to traveling, partying, and working with this amazing new body and cancer would just something that happened to me. I was naïve, young, and very vain.

After lunch, we went to the chemotherapy floor and that was when reality hit me. My oncologist reviewed his treatment plan which included 2 months of doxorubicin hydrochloride and cyclophosphamide chemotherapy every other week, followed by a year of paclitaxel and the targeted therapy trastuzumab (Herceptin and biosimilar) and 10 years of tamoxifen. We had to be very aggressive because I was so young and tests showed that I was likely stage II — we later found out I was stage III. He went through the side effects including hair loss, weakness, nausea, and fatigue. I was OK until he got to infertility and recommended freezing my eggs.

Did I want children? Maybe. I figured I would have at least a decade before making that decision. I had just graduated college with student loans. My savings account was non-existent, my checking account was still linked to my mom’s, and I borrowed from her regularly. I couldn’t think about children when I was barely an adult, living with two roommates and eating gummy bears and chips for breakfast when I was too lazy to cook.

When I got home, I contacted my insurance company and a couple of fertility clinics. It turned out that egg retrieval was going to cost around $20,000 out of pocket plus $2,000 a year in maintenance fees. I couldn’t ask my mom to go into debt for children I wasn’t sure I wanted and I definitely didn’t have the money. I made the hard decision at 23 that I would never carry children. I cried and of course, searched for infertility stories and how people cope with it.

I had a double mastectomy with expanders in December 2013, followed by chemotherapy. I went into treatment thinking my young age would make it easier on me, but I was so wrong. Mentally, emotionally and physically I was exhausted, and the finish line looked so far away. However, by August 2014, I had finished chemo and had exchange surgery for my implants. Life resumed some normalcy by my 24th birthday and I even started dating again. It was awkward at first to have the “I don’t have nipples and I can’t have children” conversation but eventually, it was just another line on my Tinder profile.

Positive

In April 2015, I started feeling sick again and I was sure my cancer was back. I was devastated since I had just finished my trastuzumab injections the month prior and was looking forward to never stepping foot in the chemo ward again. My sister joked that my symptoms resembled pregnancy but I laughed it off since I was not ovulating and knew it was a medical impossibility.

I took a pregnancy test to prove her wrong and there were two lines. We immediately went to the store and purchased two more, which also came back positive. I thought it was a joke that God was playing on me so we went to the pharmacy and purchased six tests from different brands. I took four that evening and two more in the morning and they all were positive.

I made an emergency appointment with both my OBGYN and my oncologist. There was no way. I didn’t know how pregnancy tests work but I just knew it was picking up my cancer hormones and that was causing the false positives. Fast forward 8 months and I gave birth to a healthy baby girl. My pregnancy was high risk and I was monitored weekly. At first, it felt too good to be true and I was scared to get attached or excited, but by 32 weeks, no one could explain it but my baby was viable. My oncologist stated that there is not much research about breast cancer in your early 20s. The research on fertility and young women with breast cancer was based mostly on results from women nearly twice my age.

Metastases

Fast forward to 2018, and I begin to feel pain in my chest. This time, I knew it was not another pregnancy. After a year of being misdiagnosed as heartburn, scar tissue, and a bone spur, 2 days before my 29th birthday, I was diagnosed with metastatic breast cancer that had spread to the bone, lungs, and liver.

I had 14 rounds of localized radiation to my chest bone and I started taking ribociclib and letrozole and so far, my cancer is holding steady. I’m not getting better but on the bright side, I’m not getting worse. As a preventative measure, I had my ovaries and fallopian tubes removed in June 2020. Thanks to my team when I was first diagnosed and this latest surgery, my scars are hidden, even in bathing suits, and I love what I see in the mirror.

Looking at me, you don’t see the pain or fatigue that I am fighting every day and that is how I want it to be. I believe that having this positive outlook and walking in faith is what is getting me through this time. I’ve always heard “fake it till you make it” so I will fake healthy and hopefully one day I will be. At 30, I realize that I am the case study or story younger me was hoping to find and I hope my story helps the other young women who are being diagnosed every day.

Lisandra Rodriguez-Cole, 30, lives in Baltimore with her daughter. She was diagnosed with stage III hormone receptor-positive, HER2-postive breast cancer in 2013. In 2019 she was diagnosed with metastatic breast cancer, with metastases in the bone, liver, and lungs. Liz is originally from Cuba, and she speaks fluent Spanish and once lived in Spain for four months.