YSC Responds to JAMA Article on Breast Cancer Incidence

JAMAAn article published in the Journal of the American Medical Association (JAMA) on February 26, 2013, discusses the incidence of breast cancer in the United States and concludes that the number of young women presenting with metastatic disease at initial diagnosis has been increasing over time.  Given the subject matter of this article, YSC believes it is important to share with our constituents what this article says and what it means for young women diagnosed with breast cancer.

In “Incidence of Breast Cancer with Distant Involvement Among Women in the United States, 1976 to 2009,“ [hereinafter “JAMA article”] the authors examined data from the U.S. National Cancer Institute Surveillance, Epidemiology, and End Results (SEER) database to find trends among breast cancer diagnoses.  The authors observed a “small but statistically significant increase in incidence of breast cancer with distant involvement [metastasis to distant location such as bone, brain, lung, etc.] for women aged 25 to 39 years” of age. (JAMA article, at 805).  This increase accounted for the women who presented with metastatic (Stage IV) disease at time of initial diagnosis.  According to the SEER 9 database, the incidence of women in the U.S. aged 25 to 39 who presented with metastatic disease at initial diagnosis went from 1.53 per 100,000 women in 1976 to 2.9 per 100,000 women in 2009. The authors do not know the cause of these results and admit that further studies to corroborate their findings are necessary.

So what does this study mean to YSC, to young women diagnosed with breast cancer, and to healthy young women?  First, there is no cause for alarm or panic.  As the authors of this article state, their observations need to be corroborated and if that can be done, then further research is needed to ascertain why these numbers appear to be rising.  The JAMA article is a retrospective observational study, and as such, gives us very limited information.  This study does not and cannot explain why the distant diagnoses may be rising in young women.  As the authors admit, those diagnosed with distant disease at the time of their initial diagnosis is “relatively small.”  We also need to bear in mind the limitations of retrospective surveillance data.  SEER 9 data only captures 10% of the U.S. population from nine specific areas that may or may not be representative of the whole country.

How does this study affect young women already diagnosed with breast cancer?  It doesn’t.  This article does not address the risk of recurrence or metastasis for a young woman previously diagnosed with breast cancer.  Its findings applied to metastatic disease at initial diagnosis and not recurrence or spread of disease.

How does this study affect healthy young women?  The study does not warrant any change to YSC’s position that all young women should be familiar with their breasts, know what is normal for their body, and go to their healthcare provider if they find something that is not typical.  As the JAMA study revealed, the incidence of localized and regional disease in 25 to 39 year olds has not changed since the 1970s. From 2005-2009, the median age at diagnosis for cancer of the breast was 61 years of age. Approximately 0.0% were diagnosed under age 20; 1.8% between 20 and 34; and 9.9% between 35 and 44.  See http://seer.cancer.gov/statfacts/html/breast.html#incidence-mortality

Does this article show a need for breast cancer screening in women aged 25 to 39?  No.  Current screening methods are not effective in young women.  Recent research calls into question the benefits of screening mammography for women under 50.  Just last December, a paper by one of the JAMA article authors and Dr. Gilbert Welch showed the harms that mammography screening has caused over the last three decades.  See http://blog.youngsurvival.org/?p=2046.

Last, but certainly not least, this study shows the need for young women to be informed about science, statistics and critical review of study reports and media summaries of those reports.  If you are interested in learning more, we encourage you to consider attending Project LEAD, a training course offered by the National Breast Cancer Coalition, which is now accepting applications for its annual Institute.  http://www.breastcancerdeadline2020.org/get-involved/training/project-lead/

Regardless of the exact number of young women diagnosed with metastatic disease at initial diagnosis, it is too many.  There is an urgent need to study metastatic disease, especially in young women who are generally understudied and excluded from metastatic clinical trials. YSC has always emphasized the importance of researching breast cancer in young women and this article supports that need.

A comprehensive summary of the article, explanation and commentary can be found in YSC’s detailed statement.

YSC would like to thank Joy Simha for her input and assistance with developing this statement.

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Comments (5)
Categories: Guest Bloggers

5 Responses to YSC Responds to JAMA Article on Breast Cancer Incidence

  1. Jen says:

    I was diagnosed at 30 (ER+ PR+ HER2-), had a lumpectomy (clean margins, NO nodes involved, Stage IIA) and 6 months of chemo (AC followed by Taxol) then 7 weeks of daily radiation. Then I started Tamoxifen and thought I was ready for the “new normal” that everyone talked about. At my first 3 month check up, there was a recurrence found in the breast. This led to a PET scan showing multiple lesions throughout my bones.
    While I understand this study is retrospective, I think YSC does a disservice to the many young women living with mets by “toning down” the severity of the findings. The number of young women diagnosed Stage IV had DOUBLED in our lifetime.
    I agree, mammography is not the answer. I think your statement: Regardless of the exact number of young women diagnosed with metastatic disease at initial diagnosis, IT IS TOO MANY. There is an URGENT need to study metastatic disease, especially in young women who are generally understudied and excluded from metastatic clinical trials. YSC has always emphasized the importance of researching breast cancer in young women and this article supports that need. ”
    If this article supports “that need” then please don’t play down the importance of this finding. Lead the way in helping discover new ideas and create new trials for young women living with mets. Metavivor and MBCN are out there, but YSC needs to step up and advocate more for young women with mets.

    • admin says:

      Thanks so much for taking the time to provide feedback. YSC deeply respects and values each and every woman we serve. YSC has focused its resources for the last 15 years on bringing the face of young women to the breast cancer decision-making tables. The organization’s decision to respond to the study the way we have is based upon the fact that the research gives us limited data that needs to be corroborated. YSC focuses its resources and programs on stressing the need to uncover what causes breast cancer and its metastasis, such as our collaboration with world-renowned researchers and clinicians at YSC’s Research Think Tank earlier this month.

  2. Csilla says:

    Thank you for sharing!

    Very interesting! I lost my best friend to Patty to TNBC, Invasive Ductile Carcinoma In Situ this past Thanksgiving, 2012.

    To increase awareness, I have a TNBC Presentation scheduled for tomorrow: Wed, 2/27/13 @ 11:00 am – 12:30 pm in Dearborn, MI which can be attended online via WebEx & Call-in as well as in person 1 block from The Henry Ford Museum along Village Road!

    Any questions, please email cgutay@ford.com prior to 10:00 am so that I can get you the details/and or register you.

    Take care,
    Csilla

  3. Pamela Bayer says:

    My daughter was diagnosed at age 21 with invasive ductile carcinoma. She was lucky cause her boyfriend was feeling her up and he felt a lump. ( can’t believe I thanked him for this ) They did no Pet scans nor check any other part of her body other than her breasts. There is no family history. Since her diagnosis, last year, she has been contacted by at least 2 other 20 yr old women in our area, ROchester NY. with breast cancer. 3 years ago, our best friends daughter died at the age of 24 of metastasized BC, was not discovered until very advanced. She was from New Orleans. I don’t know how they are keeping these statistics, but I am very confident that there is a sharp rise in young women and this needs to be taken very seriously because the diagnosis, testing treatment, etc has NO connection to this age group. What is very important is the recent study released by the NIH on the findings regarding enviromental influence on BC and the recent world health organization study on endrocrine disruptors – young women with BC are on the rise and if it is not detected until 25 – 30 it may be very advanced. NOT to be alarming BUT it is shocking to see my baby with a mastectomy. Thank you.

  4. Many thanks for taking the time to leave your comments. We appreciate it … and please know we hear you. We thought you might be interested in these articles where YSC’s Stephanie Carson discusses with NBC News & the Associated Press her experiences as a young woman living with metastatic breast cancer and the need for more research: http://nbcnews.to/XeQNlL and http://bit.ly/XmHqjP

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