You’re Too Young for Cancer: The Unintentional Advocate

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September/October 2011

By Kat Werner

It was Friday, June 9, 2006 at 3:32 pm in the afternoon. I will remember it for as long as I live. “You have breast cancer, a very aggressive type,” the voice on the other end of the phone line informed me: “This needs to be dealt with immediately.” 

The story started a few weeks earlier during a routine physical. I had asked what I call a “doorknob question”, the kind of question you ask the healthcare provider right as she’s getting ready to leave and has her hand on the doorknob. “Oh, by the way, one last thing: I have had this pain in my breast that just won’t go away. I’m sure I’m just wearing cheap bras, but I thought I should mention it since my mom has all these sisters with breast cancer. Neither my mom or grandma have ever had it, and I’m only 31, but I wanted to bring it up, since the pain just won’t go away.” The insightful nurse decided to send me for a series of routine tests, if only to establish a baseline. At the time, I had four aunts who had been diagnosed with breast cancer, all before menopause — and two had died from the disease.

Each person in the process assured me I was too young to get breast cancer, but they had to rule everything out. In hindsight I should have asked, “If I am too young, why would you need to ‘rule anything out?’” — but hindsight is 20/20. The testing process started with a mammogram, but mammograms are often useless for younger women, because our breast tissue is too dense to see any problems. Like many young women, my mammogram was unclear. The next step is usually an ultrasound, which can better navigate dense breast tissue and allow doctors to see tissue from various angles. My ultrasound revealed a small “shadow” on the screen in the area where I had pain. Since I finished breast-feeding my son less than a year earlier, the shadow could have been caused by inflammation of my milk ducts. Unfortunately for some young women, potential alternate causes for pain — such as inflamed milk ducts — can lead to delayed cancer diagnoses. I was blessed to have a doctor who was vigilant in making sure a needle biopsy was performed immediately.

I was told that nothing about this “shadow” looked alarming or cancerous — and then I got the call telling me I had cancer. The night of my diagnosis was a blur. I was a sponge for information. What I didn’t realize then, was that I became my own first advocate that night.

Of course it was a Friday night, and I had no access to libraries, doctors’ advice, or traditional resources; so, like millions of women do each day, I hit the Internet. That night, a simple search led me to the Young Survival Coalition (YSC), a non-profit organization founded by a group of courageous young breast cancer survivors who knew that their voice and needs were not being heard by the broader breast cancer community. YSC exists to help women under 40 who have been diagnosed with breast cancer. Women from all over the world gather at YSC to share their experiences, treatments, questions, concerns, and fears. Women like me, with young child-ren, just starting careers, who were concerned that all the information they received was geared towards their older sisters in this fight. YSC’s community message boards became my lifeline for emotional, logistical, spiritual, and medical support.

I learned that, each year in the U.S., approximately 70,000 men and women aged 15 to 39 are diagnosed with cancer and that breast cancer accounts for roughly 15% of these cancers.1  Women between the ages of 15 and 54 die more frequently from breast cancer than from any other type of cancer.2 Breast cancer in young women under age 40 is very rare; only 5 percent of breast cancer cases occur in women this age.3  African American women under age 35 have rates of breast cancer two times higher than White women in that age group.1 These young, African American women are also more likely to have aggressive forms of breast cancer than other women are, and African American women of all ages are more likely to die after being diagnosed with breast cancer than are White women.4 Researchers believe that access to, and quality of, health care might explain these disparities, but we don’t know for certain yet.

Compared to older women, young women generally face more aggressive cancers and lower survival rates, and the evidence indicates that breast cancer that occurs before age 40 differs biologically from cancer faced by older women. Sadly, there is currently no effective breast cancer screening tool for younger women, whose dense breast tissue complicates the process.

While a breast cancer diagnosis is incredibly difficult at any age, it is particularly hard for a woman under age 40, and has worse outcomes. Young breast cancer patients, like me, have concerns that either don’t exist, or are less severe, for older breast cancer patients, including surgically induced early menopause, loss of fertility, possible ovary removal, and long-term survival issues. And, since breast cancer occurs at a much lower rate among young women, we remain under-represented in many research studies, thereby compounding the problems of poor treatment options and outcomes.6

By Monday, I had equipped myself with the latest medical research about my cancer type. Since two aunts had lost their fight with this disease, I wasn’t going to look back and wish I had been more aggressive. Despite an early cancer diagnosis, I wanted a double mastectomy and all the drugs, therapies, and treatments I could handle. I wanted to be alive to see my kids grow up.

My first few appointments were with local doctors, starting with the breast cancer specialists listed in my health insurer’s book of providers. These doctors’ advice was terrible, and consisted of out-dated recommendations geared towards older, post-menopausal women who didn’t want either more kids or reconstruction. My YSC sisters helped me develop questions, locate good evidence-based studies on my specific cancer type, and equip myself to find better doctors. With their help, I found an amazing doctor who was both current and intelligent. I brought my stack of studies, prepared to defend my treatment choices and, with each one I mentioned, my new doctor cited the author. I had found my kindred spirit! 

Just two weeks after my diagnosis, I had a double mastectomy with tissue expanders put in place to begin the process of reconstruction. Six weeks later, I started 16 weeks of intense chemotherapy, often referred to as A/C and Taxol. (I was warned I would lose my hair and that the “A/C” part of chemotherapy was often referred to as the “Red Devil” because of its bright red color and nasty side effects.) After that, reconstruction — which was a much harder battle than I expected. Despite all the research I did about treatment, reconstruction seemed like after-thought in terms of importance; I did no research and chose the most convenient doctor. After three surgeries, my reconstruction wasn’t going so well and my once C-cup breasts were misshapen A-cup lumps. A dismissive plastic surgeon made me realize that I could find better care, and deserved it. Thankfully, my YSC sisters helped me research reconstruction with the same fervor I had applied to treatment options. With their help, I found a great plastic surgeon and, after more two surgeries, was thrilled with the results. In fact, I can actually look at my evolved chest with some sense of joy and pride.

I now counsel women who are newly diagnosed on the importance of taking the time to get the right opinions and understanding their options. I often say, “Your breast is not on fire, take time to make the right choices.”

It saddens me that women often have to settle for inadequate doctors because of their location, income, or health insurance situation. These issues are particularly important for low-income women and women of color, who may not be able to get the best treatment. My concerns about these problems lead me to become an advocate so my daughters do not have to face this fight. After finishing treatment, I started to get phone calls from friends and acquaintances, saying: “I have a friend who has been diagnosed, can you help her navigate this minefield?” I started attending breast cancer conferences and met clinicians, researchers, government and cancer non-profits that needed survivors to provide their input on research. I realized I had an affinity for breaking down this information for other laypeople. I learned that younger women are not well-represented in breast cancer advocacy circles, so I set out to change that.

Now I am privileged to do full-time breast cancer advocacy with several national organizations. I work on the four cornerstone issues of breast cancer advocacy: political, community, individual patient concerns, and research. I meet with researchers to help them figure out how to encourage young women to participate in clinical trials and encourage them to analyze data by different age groups and to explore cancer in under-served populations. I review grants to make sure young women’s voices are addressed in research questions and that research looks at young women’s unique issues — like the longer use of endocrine therapies, treatments that maintain fertility, and the effects of premature menopause on other body systems.
 
YSC is leading the charge to ensure these issues are actively addressed, by putting advocates like myself on government and private committees to ensure we have a voice with decision-makers.  In 2012, YSC plans to hold a research symposium to create a research agenda for the future to make sure these concerns are being properly addressed.

There are many amazing advocacy groups raising money, reaching individual patients, lobbying Congress, engaging the research community, making sure survivors’ voices are heard. I have been able to travel to 26 states in the last 5 years to meet with some of these stakeholders with the intent of affecting real change for all breast cancer survivors and their loved ones. In the end, I would love to work myself out of a job and have my daughters know a world without breast cancer. I work to that end and celebrate the privilege of my survivorship each day. 
 

To get involved in advocacy, or for more information on breast cancer, see the YSC website: www.youngsurvival.org. Another great resource is the American Cancer Society (www.cancer.org). My personal advocacy blog is: http://cancerresearchadvocate.blogspot.com. You can also follow me on Twitter under the user name: javabuz.
 
References

1. Adolescent and Young Adult Oncology Progress Review Group, Closing the Gap: Research and Care Imperatives for Adolescents and Young Adults with Cancer (NIH publication # 06-6067). Bethesda, MD: National Institutes of Health, National Cancer Institute and the LIVESTRONG Young Adult Alliance, August 2006. Available at:  http://planning.cancer.gov/library/AYAO_PRG_Report_2006_FINAL.pdf
2, National Cancer Institute, 2006 Fact Book. Bethesda, MD: US Department of Health and Human Services, 2006. Available at: http://obf.cancer.gov/financial/attachments/06Factbk.pdf
3. Dr. Susan Love Research Foundation, “Populations of Interest: Young Women”, online fact sheet, available at: http://www.dslrf.org/mwh/content.asp?L2=6&L3=2&SID=215
4. American Cancer Society, Breast Cancer Facts and Figures 2009-10. Atlanta, GA: American Cancer Society, Inc, 2009. Available at: http://www.cancer.org/Research/CancerFactsFigures/BreastCancerFactsFigures/breast-cancer-facts--figures-2009-2010.
5. Partridge, A.H. et al., “Breast Cancer in Younger Women”, in J. Harris (Ed.), Diseases of the Breast, Philadelphia, PA: Lippincott Williams & Wilkins, 2009, pp. 1073-1083.

Kat Werner is five-year breast cancer survivor who was diagnosed at 31. She lives in Blacksburg, VA with her husband of 12 years and her three children. She travels as a full-time breast cancer research advocate and does political, community, and research advocacy work for several national organizations.