Four years ago after the birth of my youngest son, I went for my first mammogram. I was 29 years old, but because of a familial history of breast cancer, (my grandmother was diagnosed in her early 30s) my doctor and I decided to begin yearly mammograms earlier than most women.
I remember the nurse telling me how I would receive my results. I can remember her assuring me that most likely I would be receiving a letter three weeks after my appointment stating that everything was fine and that I should return in three to five years for a follow up. She said, “You’re young and you shouldn’t stress yourself.”
The next day while on the phone with my best friend, who, coincidentally, also just had her first mammogram for similar reasons, I received a call from the radiologist. They had found calcifications on my X-ray and needed me to return as soon as possible for a needle biopsy. The phone call came on a Friday, so I had to wait an entire weekend before returning for the procedure. I had no clue what calcifications were, and the only things I could find on the Internet related to women over the age of 45. There was virtually no information for women my age. That’s when I came across the Young Survival Coalition. Luckily, my calcifications turned out to be benign dermal calcifications and an excisional biopsy for another finding during the mammogram also came back non-cancerous. Had I not come across the Young Survival Coalition, however, I would have gone into my surgery completely unprepared and thinking I was alone in a diagnosis generally reserved for an older generation.
The Young Survival Coalition was formed in 1998 by three women who had all faced the diagnosis of breast cancer while under the age of 35. Facing the same issues that I faced when trying to find information about breast cancer in women their age, they decided to be the voice for this under-represented group. According to the Young Survival Coalition brochure, it is estimated that more than 250,000 women diagnosed with breast cancer at the age of 40 or younger are living in the U.S. today.
The Young Survival Coalition was the first organization to focus exclusively on the issues young women with breast cancer face. Today, they not only provide comprehensive resources, support and education to address every phase of a young woman’s breast cancer experience, but they also work with doctors, researchers and legislators to educate them about the unique issues young women face. They continually advocate for more research on breast cancer in young women, and they raise awareness that young women can and do get breast cancer.
Recently the Young Survival Coalition has been highlighted in publications including Vogue, O! Magazine, Glamour, Allure and Self. I had the opportunity to speak with Suzanne Beckmann, Director of Communications for Young Survivors Coalition, about a week-and-a-half ago about some of the unique and exciting programs that the Coalition is currently implementing and she also shared with me some ways in which each of us, those living as survivors and those who have never been diagnosed with breast cancer, can partner with them and share their mission.
Most recently, the Young Survival Coalition has partnered with the Dr. Susan Love Research Foundation on the Health of Women (HOW) Study to examine the collateral damage of breast cancer. The How Study is the first-ever international online study for breast cancer. They are in search of volunteers who are currently living with the disease, to identify factors that are linked to long-term survival and the impact of treatments on their lives. Even if you’re not living with the disease and have never been diagnosed with cancer, you can still participate. The goal is to make sure ALL women are well represented in this study. You can find more information here.
Another very exciting event takes place October 23, in Los Angeles, California at the Hollywood Bowl. Katy Perry will be headlining a benefit concert in which all proceeds will go towards supporting the Young Survivors Coalition. Sara Bareilles, Ellie Goulding, Tegan & Sara and Kacey Musgraves will also be taking the stage during this special concert campaign to bring attention to, and share information on, the disease.
This year, the Young Survival Coalition is celebrating their 15 year anniversary of being the first organization to address the needs of young breast cancer awareness. When I asked Ms. Beckmann if there was one thing that she could communicate about the Young Survivors Coalition she simply said, “We want young women living with the diagnosis of breast cancer to know that they are not alone. There are people out there to support them.”
I am a testament to that unwavering dedication and support and because of that and so many more reasons, the Young Survival Coalition’s mission must be shared. If you know of someone under the age of 40 that has been diagnosed with breast cancer, or you yourself have been, please share this valuable resource. You’ll be so glad that you did. For ways in which you can get involved with Young Survival Coalition, visit their website at www.youngsurvival.org.