By Gary Schwitzer
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 versus 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 versus
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 13 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?’ "