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Guest Blog: Women with Metastatic Breast Cancer Clamor for a Different Awareness Level
| October 4, 2011
Some breast cancer voices raise questions about simply raising "awareness" about breast cancer in October.' Some of them believe that raising awareness about screening, for example, should not be the only message or even the main message of the month.
Katherine O'Brien, who has metastatic breast cancer (MBC), and who publishes the ihatebreastcancer blog refers to being caught in "October's pink undertow."' Plunked down in the middle of breast cancer awareness month is National Metastatic Breast Cancer Awareness Day on October 13.' O'Brien says that people like her with MBC have different concerns from those with early stage cancer.' She wrote to me: "The day is not about general cancer awareness; it's about acknowledging the distinct needs of people who have the advanced, incurable form of breast cancer."
She quotes Ellen Moskowitz, past president of the Metastatic Breast Cancer Network (MBCN):
"We don't fit in with all the cheering about 'beating the disease'. We have to learn how to live with the ever-present anxiety of knowing it is a matter of time till the present treatment stops working. We are left trying to explain to friends and family why we are still on chemo. The world likes closure and we have no closure."
The MBCN posted this YouTube video, and they post these "13 Facts Everyone Should Know about Metastatic Breast Cancer":
- 1. No one dies from breast cancer that remains in the breast. The lump itself is not what kills. The metastasis of cancerous cells to a vital organ is what kills.
- 2. Metastasis refers to the spread of cancer to different parts of the body, typically the bones, liver, lungs and brain.
- 3. An estimated 155,000 Americans are currently living with metastatic breast cancer. Metastatic breast cancer accounts for approximately 40,000 deaths annually in the U.S.
- 4. Treatment for metastatic breast cancer is lifelong and focuses on control and quality of life vs. curative intent ("treatable but unbeatable").
- 5. About 6% to 10% of people are Stage IV from their initial diagnosis.
- 6. Early detection is not a cure. Metastatic breast cancer can occur ANY time after a person's original diagnosis, EVEN if the patient was initially Stage 0, I, II or III and DESPITE getting annual checkups and annual mammograms.
- 7. Between 20% to 30% of people initially diagnosed with regional stage disease WILL develop metastatic breast cancer.
- 8. Young people DO get metastatic breast cancer.
- 9. There are many different kinds of metastatic breast cancer.
- 10. Treatment choices for MBC are guided by hormone (ER/PR) and HER2 receptor status, location and extent of metastasis (visceral vs. nonvisceral), previous treatment and other factors.
- 11. Metastatic breast cancer isn't an automatic death sentence. Although most people will ultimately die of their disease, some can live long and productive lives.
- 12. There are no hard and fast prognostic statistics for metastatic breast cancer. Everyone's situation is unique, but according to the American Cancer Society, the 5 year survival rate for stage IV is around 20%.
- 13. October 13th is National Metastatic Breast Cancer Awareness Day. To learn more about it as well as resources specifically for people with metastatic breast cancer see www.mbcn.org.
News coverage of breast cancer awareness month topics had barely begun before O'Brien already found problems.' She criticizes a Los Angeles Times story which, while it included a Stage IV woman among six profiles, repeatedly used the term "cancer-free."' O'Brien argues that while these women may be "cancer-free" the Stage IV woman will always have cancer - even if it can't be seen today.' And she was bothered by an accompanying LA Times piece that stated:
"Even better...aggressive breast cancers that are fueled by HER2 are on their way to being wiped out in the developed world."
It's the "wiped out" that caught her eye and that of Forbes reporter Matthew Herper, who, in response to this article, asked on Twitter, "How is an 8% recurrence rate being 'wiped out?'"
More Blog Posts by Gary Schwitzer
Gary Schwitzer has spent more than 30 years in journalism on radio, television, interactive multimedia and the Internet. He is the publisher of HealthNewsReview.org, a website aimed at improving the accuracy, balance and completeness of health news reporting and helping consumers evaluate the evidence for and against new ideas in health care. Want to know more? Follow him on Twitter at @garyschwitzer.
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July 23, 2013 at 2:33 AM
Great blog! I truly love how it’s easy on my eyes and the details are well written. I am wondering how I could be notified whenever a new post has been made. I have subscribed to your rss feed which ought to do the trick! Have a nice day!
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