There are more than 250,000 women 40 and under in the U.S. living with breast cancer, and over 11,100 young women will be diagnosed in the next year. Breast cancer is the leading cause of cancer death in women ages 15 to 54 . These young survivors have their own conferences. Their own internet message boards. Heck, they even have whole organizations advocating on their behalf. So, what is so different about breast cancer in younger women?

Unaware of risk
Perhaps the most important difference is that some younger women, and their doctors, are not even aware that they are at risk for breast cancer. The average age of a woman when diagnosed with breast cancer is 63. Even though many women know that the key to a good outcome is early diagnosis, they may not take immediate action in the face of a breast lump because they simply do not think they could get cancer at a young age.

Sadly, many young women experience a delay in diagnosis because their concerns are ignored by their doctor. It’s an alarming set of events, but not unique. A young woman discovers a mass in her breast and becomes concerned. She decides to discuss it with her OB/GYN doctor. Her doctor feels the mass, but tells her not to worry about it; that she does not fit the profile for cancer. She is under 40 years old, and has no family history of breast cancer. Her doctor tells her it is a cyst and to wait and see if it goes away in a few months. The woman is later found to not only have breast cancer, but to have metastatic breast cancer due to the delay in diagnosis. Many young women go undiagnosed while their cancers continue to grow because their doctors think they are too young to get breast cancer, or choose to roll the dice and not order necessary diagnostic tests in an effort to reduce costs.

Stagnant survival rates
While the five-year survival rate for childhood and older adult cancers has climbed to about 80%, the survival rate for young adults (those diagnosed between ages 15 and 39) remains around 60%, and has not changed in decades . Why? There are multiple reasons, again, centering around delays in diagnosis not only as a consequence of the scenario outlined above, but also because this age group has the highest uninsured rate. Due to the lower incidence of breast cancer in the younger population, premenopausal women with breast cancer are underrepresented in research studies . Add to this the fact that younger women often have more aggressive cancers that don’t respond to the available treatments, and it is easy to see why survival statistics have not increased.

Lack of age-appropriate educational resources and support

Many young women feel a sense of isolation when diagnosed with breast cancer, or any cancer for that matter, because it is rare that their peers can relate to what they are going through. A breast cancer diagnosis can be devastating at a time when a woman is launching her career, dating or getting married, or starting a family. When their friends don’t understand, there is no one close to their age in the local support group, and the educational materials given them by their doctors have pictures of women who look more like their grandmothers, the sense of separation can be overwhelming. Many of these resources don’t address issues of concern to many younger women, like cancer during pregnancy, fertility, careers, early menopause, sex, dating, and managing young children during treatment.

So, is breast cancer more devastating for a woman of 33 than for a woman of 73? No. It is devastating for any woman. We all worry about losing time with loved ones. We all feel the pain associated with the many stages of breast cancer treatment. We all fear our cancer will recur or progress. These are things we can all relate to, regardless of age. Young and old, we are all in this together as we fight for a cure.

Resources for Young Women Facing Breast Cancer

I’m Too Young For This! Cancer Foundation: www.i2y.org
i[2]y is the nation’s fastest growing advocacy, support and research organization working exclusively on behalf of survivors and care providers under the age of forty.

Fertile Hope: www.fertilehope.org
Fertile Hope is a national, nonprofit organization dedicated to providing reproductive information, support, and hope to cancer patients and survivors whose medical treatments present the risk of infertility.

LiveStrong Young Adult Alliance: www.livestrong.org
The LiveStrong Young Adult Alliance is a coalition of organizations with the goal to improve the survival rates and quality of life for young adults with cancer between the ages of fifteen and forty. The Alliance is committed to promoting research and the investigation of the problem, serving as the voice for the issue and promoting effective solutions.

The Young Survival Coalition: www.youngsurvival.org
The YSC is the premier international, nonprofit network of breast cancer survivors and supporters dedicated to the concerns and issues that are unique to young women and breast cancer. Through action, advocacy, and awareness, the YSC seeks to educate the medical, research, breast cancer and legislative communities and to persuade them to address breast cancer in women forty and under. The YSC also serves as a point of contact for young women living with breast cancer.

Recommended Age-Appropriate Educational Resources and Support
1,3 Young Survival Coalition. Available at: www.youngsurvival.org. Accessed 11/7/08.
Closing the Gap: Research and Care Imperatives for Adolescents and Young Adults with Cancer. Available at http://planning.cancer.gov/disease/AYAO_PRG_Report_2006_FINAL.pdf. Accessed 11/7/08.

About the author: Tina Koral is a freelance writer and a five-year cancer survivor. Her memoir, If I Just Breathe (ISBN: 1440419922), is available for $14.95 on Amazon.com. More information is available at www.tinakoral.com