Women with metastatic breast cancer clamor for a different awareness level this month

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 OBrien.jpgKatherine 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 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?” ”

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Nancy Stordahl

October 4, 2011 at 10:47 am

In my opinion, it is simply appalling the lack of attention/funding given to metastatic breast cancer even during the month of October. Metastatic breast cancer is the cancer that kills. It’s doesn’t fit in quite so nicely with all the “pinkness.”
Thank you to you and Katherine for doing your part to change things.

Katherine OBrien

October 4, 2011 at 1:29 pm

Hi Gary,
Thank you so much for helping us help people understand what metastatic breast cancer is and why it is different from early stage disease.
Just a reminder:
2011 Natl Metastatic Breast cancer conf is Oct 28-29 at Johns Hopkins.
All MBCN events are free and open to family, friends and health care professionals.
Speakers include: Stephen Baylin, MD ; Leisha Ann Emens, MD, PhD ); Carolyn Hendricks, MD; Robert S. Miller, MD (; Tanya Michelle Prowell, MD ; and Richard Cedric Zellars, MD.
Breakout sessions will include:
>Caregivers’ Roles
>A Patient’s Perspective on Navigating Social Security Disability
>Living with Uncertainty: An MBC Panel Discussion
>Role of Surgery in Soft Tissue Mets
>Managing Side Effects
>Nutrition and Wellness
For information on hotels, scholarship availability, parking, and directions see: http://mbcn.org/special-events/category/hotel-transportation-and-scholarship-information/.


October 4, 2011 at 2:36 pm

Gary congratulations to you and to Katherine O’Brien for reminding the “cheering”crowds about the realities of breast cancer. Breast cancer is not at all pink, it’s red …For the thousands of women with the MBC or IBC, it’s only red..
I also believe that women have enough awareness about breast cancer, now they need to know the facts, understand how to read statistics, become health literate to participate in their care, connect with other patients to share experiences and practical information that only patients have.

Ginny K

October 4, 2011 at 5:12 pm

thanks for spreading the message about metastatic breast cancer. Pinktober is a tough month for many of us–frustration at the overemphasis on selling pink items and glamorizing breast cancer, when 40,000 people still die annually from breast cancer. As my niece commented to me recently: I never realized how bittersweet that pink ribbon is to you and many, many women.
Equally frustrating that more dollars are not going to research, particularly research on what causes metastases, which is, after all, what kills.


October 4, 2011 at 7:03 pm

Thank you very much for highlighting the plight of metastatic breast cancer patients like myself. It is refreshing to know that we have advocates, such as you and Katherine, who recognize that there is no cure for breast cancer — people continue to die of the disease. Early detection is helpful but the emphasis on this masks the seriousness of the disease and the appalling lack of funding devoted to ending metastases, the cause of death. Thank you.


October 6, 2011 at 1:31 pm

First of all, I want to thank you for raising awareness about breast cancer/metastatic breast cancer. I was diagnosed February 22, 2010 with Stage IV MBC that had spread to my liver. I had two tumors in my liver. I was told that we would not be able to cure my cancer and that I would die from this disease. The doctor tried to encourage me by saying that I could live a long productive life with treatment. My first thought was that my God is bigger than cancer and I refused to accept my prognosis. I knew God could heal me if he chose to. My husband, family, friends, strangers all over the world and myself began praying specifically for God to heal me. I stayed strong in my faith and turned to God everyday for strength, comfort and understanding. Six months into treatment, August 2010, I received a clean scan. BOTH tumors in my liver were gone. God healed me! I celebrate over a year of remission and being cancer free and I thank God EVERYDAY. I share my story in hopes of reminding every person who has been diagnosed with breast cancer or metastatic breast cancer not to give up and not to lose hope. I believe our attitudes and staying positive play a big part in how our bodies react to treatment. Through my faith I stayed positive knowing that God could heal me and He can heal you to.

Debbie Penn

October 7, 2011 at 5:12 pm

Thank you for spreading the message of Stage IV BC!! We need to be heard. God bless.


October 9, 2011 at 7:01 am

I have to agree.Metastatic breast cancer needs to be looked at differently.We are becoming a group of women living beyond what was expected of someone with this stage of cancer. We need real information that will guide us into living a good quality of life and many more years.Yes,October is a month of breast cancer awareness,but for some with metastatic breast cancer we want tools to survive the next months of our lives.New targeted drugs are now becoming the next line of treatment and we all need to be educated about these options. I hope we can hear more about these options and hear from those that are surviving years with MBC.Then October can truly become the month of breast cancer awareness and include the voices of those with MBC.Hope is there for all, who have to live with this illness.

Susan Rustad

October 14, 2011 at 10:24 am

I must thank Musa Mayer for making me aware of your blog. While we are making so little progress, it does seem that mbc is in the spotlight. I’m probably deluding myself; it’s just that I’ve become more aware. My husband will be appreciative of your affiliation with his U of M.