Young Women Can and Do Get Breast Cancer
Stacy’s story Age at Diagnosis: 29
I was 29, not even 30, but there was a lump. At 29, you wouldn’t think it was something to be alarmed about. After all, it was closer to my armpit, not in the area we commonly think of as our breast. But I knew it could be something because both my maternal great grandmother and my maternal grandmother had breast cancer as young women.
My great grandmother died at 40, and my grandmother, who had breast cancer at 33 and then again at 37, passed away in her 60s from lung cancer. Cancer runs in my family. Knowing my family history, after I found the lump, my mother and I were both tested for the BRCA genes. We are both negative.
Going to the doctor was scary, but I knew I couldn’t just ignore my lump. Afterwards, my doctor (who was fully aware of my family history) and I agreed to check it again in a month. There was a less than 1% chance that is was anything serious, but one month later, I had an ultrasound and was referred to a surgeon for a biopsy.
That biopsy led to a diagnosis of Invasive Ductal Carcinoma. Both estrogen and progesterone positive and Her2 negative. That’s a lot to take in all at once. On top of figuring out what my treatment options were, the doctor suggested I speak with a fertility specialist. At the time, I thought, “I’m gay; I’m not going to have children, and if I do, they will not be biological.” It was one more thing added to an already overwhelming situation. I wasn’t thinking of future possibilities or what science could make possible. I was in survival mode.
After meeting with my surgeon and better understanding the location of the tumor and the surgery I would undergo, I was less concerned about having a drastic change to my breast. As it turned out, my breast doesn’t look much different post surgery. What I was worried about was losing my hair. Though I wasn’t a “girly girl,” I had long hair and saw it as part of my personal identity. On top of being sick, I felt that being bald would scream to the world that I had cancer; I thought it would make me feel like I was sick. It was a tough decision, but I decided to buzz my hair off. I still saw my hair fall out in little tuffs of fuzz but couldn’t imagine seeing the long strands come out in clumps. I never wore a wig, just hats, creating a true collection. And now, I wear my hair short … and I like it.
Looking back, I wish I had given more attention to my fertility-preservation options. I’d just started dating a wonderful woman, whom I’m now engaged to, and look forward to spending the rest of my life with her. As I think about what the future might hold for me and my partner, Suzanne, I think about how medicine is changing everyday and wonder about the possibilities for biological children that might have existed for me if I had explored fertility preservation and the possibility or freezing eggs. I’m not certain of what my fertility status is, but given the opportunity again, I don’t think I would have left it to chance. I think I would have chosen to participate in fertility and had my eggs harvested.
As a gay woman, I struggled with speaking with doctors about my sexuality and having to almost out myself when the topic of fertility came up. I felt like it was assumed I was straight and my partner would be a man. It wasn’t until I went to Boston for treatment that my physician, Ann Partridge, who happens to be the head of YSC’s Medical Advisory Board, addressed my treatment within the context of sexual orientation. She actually asked me the questions “What’s your dating status? Are you dating anyone now?” “Do you date men, women or both?” She didn’t make any assumptions; it was part of her normal exam. Dr. Partridge even considered my relationship status and needs when planning my treatment and how certain drugs, such as Tamoxifen, would affect by body.
With all of these factors playing a role, I needed to find support outside my circle of amazing family and friends. I wasn’t really given any information about connecting with peers when I was diagnosed, so I hunted for it. I found the National Breast Cancer Coalition (NBCC) and learned it was an advocacy organization that takes a proactive role in training advocates to make a difference and be heard. I knew this was a good first step. I attended the yearly Advocate Summit, and later that year, I was accepted into Project LEAD, a weeklong intensive advocate education and training program. While there, I met some wonderful women who worked for YSC, as well as several young women who were YSC constituents (YSC is a member organization of NBCC) and were also attending Project LEAD and striving to become stronger, better educated advocates. One of the young women I met was Jennifer Merschdorf, the CEO of YSC and a young survivor herself. I instantly felt a connection to these young women — they were facing a lot of the same issues I was. They saw breast cancer through my eyes.
The opportunity to connect with other young breast cancer survivors changed my life and my perspective, and it gave me hope. I have since become involved with several organizations that offer support and resources to young cancer survivors, joining LIVESTRONG on a First Descents adventure and attending the Stupid Cancer OMG! Cancer Summit. Both experiences gave me a chance to meet young adults affected by cancer across the country.