Tackling the growing burden of breast cancer in young women

Oct 27, 2016
Tackling the growing burden of breast cancer in young women

Breast cancer is an increasing concern for young American women, affecting approximately 12,150 of those aged under 40 in 2015.1 Since 2007 mortality rates have been level among women under the age of 501; however, the incidence of advanced breast cancer in women between 25 and 39 years of age is increasing.2

One organization that focuses specifically on this growing concern is the Young Survival Coalition (YSC). Here, the YSC’s senior director of mission marketing and communications Jennifer Johnson – herself diagnosed with breast cancer at 27 – discusses the organization’s efforts to raise awareness of breast cancer in young women.

Can you tell us about your experience with breast cancer?

I was diagnosed with breast cancer in 1999 after noticing a lump in my breast. After an ultrasound, a mammogram and a biopsy, it was confirmed I had breast cancer.

My treatment consisted of a mastectomy followed by chemotherapy, which I had to undergo while pregnant with my first child because of the aggressiveness of the cancer.

How different do you think the standard of information is for young women with breast cancer now compared to what it was like when you were diagnosed?

There’s much more information available than was offered to me. YSC, for example, has a plethora of resources to help young women with breast cancer, including navigators that focus on helping young women through their journey from diagnosis, to treatment, to managing side effects.

We also have more than 150 face-to-face local networking groups nationwide and an active online and Facebook community. In addition, we host Regional Symposiums and established the YSC Summit, which is the only national conference dedicated to young women with breast cancer

Why do you think it’s important to advocate for breast cancer in young women?

Most people are aware that breast cancer is still a prominent disease in 2016, but not the extent it affects young women. In addition, when it does occur in younger women, it tends to be far more aggressive2 and it’s tragic that there are increasing numbers of people dying from this disease at such a young age.

At YSC, we believe there should be more research into breast cancer in young women – and particularly among those with advanced disease. We still don’t know what causes breast cancer or how to cure it when it spreads, so there’s still so much to do.

How will the Young Survival Coalition be involved in Breast Cancer Awareness Month?

Our major initiative for 2016 is the #12ktoomany petition campaign focusing on driving change for the more than 12,000 women under 40 who will be diagnosed with breast cancer in the U.S. this year.1 The petition will go to the new President to ensure enough research is focused on young women and that at least half of that research is dedicated to metastatic breast cancer.

What message would you give to young women with breast cancer?

You’re not alone. There’s a whole community of people here to offer help and support. The key thing to remember is that you’re not a statistic and everyone is different – you have to figure out what’s best for you and advocate for yourself. Humor and positivity is important and will go a long way to helping you navigate the care pathway, but it’s also ok to have a down day. Although it’s a cliché, the best advice I was given was to take every day at a time.

Please note that this article describes the personal story of Jennifer and her breast cancer patient experience. This article is not intended as medical advice or to replace advice offered by medical professionals.


References

  1. American Cancer Society. Breast Cancer Facts & Figures 2015-2016. Available from: http://www.cancer.org/acs/groups/content/@research/documents/document/acspc-pdf (accessed October 2016).
  1. American Cancer Society. Study: More Young Women Being Diagnosed with Advanced Breast Cancer. Available from: http://www.cancer.org/cancer/news/study-more-young-women-being-diagnosed-with-advanced-breast-cancer (accessed October 2016).
Tackling the growing burden of breast cancer in young women

Jennifer was diagnosed with breast cancer in 1999 at the age of 27, while five months pregnant with her first child. For the past 16 years, she has dedicated herself to helping other young women facing breast cancer. She is a graduate of Project LEAD®, has served as a consumer reviewer for the DOD Breast Cancer Research Program and enjoys lobbying for important breast cancer issues. She has been honored nationally for her advocacy efforts as a Lifetime Television Breast Cancer Hero and a Yoplait Champion for the Cure. Jennifer is also a co-author of the highly acclaimed book, Nordie’s at Noon: The Personal Stories of Four Women “Too Young” For Breast Cancer and has traveled extensively as a speaker.

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