Metastatic Breast Cancer Awareness: Let’s Create Some

Now with 10% More Awareness! Photo courtesy of Peter O'Brien

Do you feel yourself getting caught in October’s pink undertow? Now it’s easier than ever to share your sentiments. Just review these MBC  bits and pieces and copy and paste to your favorite  social media vehicle, email signature block or newspaper opinion page.

Got a note or quote to add? Please share in the comments!

Facebook:

Breast Cancer in General:

“Having breast cancer is massive amounts of no fun. First they mutilate you;
then they poison you; then they burn you. I have been on blind dates better
than that.”
–Molly Ivins 1944 – 2007, columnist, political commentator and humorist

http://www.time.com/time/magazine/article/0,9171,1001832,00.html

“Cancer is not a ribbon, a screening test, or a leisure activity. It is not a sassy t-shirt, a proclamation of survivorship, or a gift worth giving. It is a disease.

For 65 percent of those who are diagnosed, it will be the eventual cause of death.

When we ignore reality in exchange for feel-good fund-raising activities, we alienate and forsake those for whom cancer is a major cause of suffering.”

–Gayle Sulik, author, “Pink Ribbon Blues”
http://www.facebook.com/pages/Pink-Ribbon-Blues/113230458731603

Iowan Sally Drees is determined to raise $41,000 before October ends (“41k in 31 Days”). $20,500 will go to The Pink Daisy Project, a nonprofit that provides support to breast cancer patients under age 45. The remaining $20,500 will go to METAvivor, a nonprofit, volunteer-run group that funds metastatic breast cancer research.

Why $41,000? “Each dollar represents one person in the U.S. who will die of breast cancer this year,” Drees explains. “I believe less pink and more green will make a world of difference this October.”

http://www.causes.com/causes/632480-the-31-day-project-moving-beyond-awareness

More Facebook

 Metastatic Breast Cancer Related:

“All too often, when people think about breast cancer, they think about it as a problem, it’s solved, and you lead a long and normal life; it’s a blip on the curve. While that’s true for many people, each year approximately 40,000 people die of breast cancer — and they all die of metastatic disease. You can see why patients with metastatic disease may feel invisible within the advocacy community.”

–Dr. Eric P. Winer, director of the breast oncology center at the Dana-Farber Cancer Institute in Boston.

http://www.heraldtribune.com/article/20110118/znyt04/101183004?p=2&tc=pg

Metastatic breast cancer claims 40,000 lives annually in the U.S. As one of 155,000 U.S. people living with MBC, I have a vested interest in educating people about this incurable disease and urging them to support research that helps people with advanced breast cancer live longer.

See www.metavivor.org.

It is critical to the thousands suffering from Stage 4 illness and to the general public that the voices of metastatic breast cancer patients be heard.

Danny Welch, an expert on metastasis, says only a few hundred scientists in the world are trying to understand the process: “It’s responsible for 90 percent of the morbidity and mortality, but gets less than 5 percent of the budget.”

http://www.heraldtribune.com/article/20110118/znyt04/101183004?p=2&tc=pg

The late Jane Soyer and Nina Schulman founded the Metastatic Breast Cancer Network  (MBCN) in 2004. MBCN is a national, independent, patient-led, nonprofit advocacy group that provides education and information on treatments and coping with the disease. See www.mbcn.org.

“The breast cancer community had become a place for ‘survivors’, not for people living with breast cancer every day of their lives. We were not being seen or heard. No one was trying to meet our needs. No one was listening.”

–Nina Shulman, co-founder of MBCN ( www.mbcn.org)

“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.”

Ellen Moskowitz, past president of  MBCN (www.mbcn.org)

National Metastatic Breast Cancer Awareness Day: Oct. 13

National Metastatic Breast Cancer Awareness Day is Oct. 13. It highlights the needs of the metastatic breast cancer community. Treatment is ongoing and unrelenting for the 155,000 women and men living with metastatic disease.

http://mbcn.org/developing-awareness/category/mbca-day/

In October, 2009, the U.S. Senate and House voted to support the designation of October 13 as a National Metastatic Breast Cancer Awareness Day.

http://mbcn.org/developing-awareness/category/mbca-day/

Please share 13 Facts Everyone Should Know About Metastatic Breast Cancer (http://mbcn.org/developing-awareness/category/13-things-everyone-should-know-about-metastatic-breast-cancer/).

National MBC Awareness Day: In Memorium

This October I will remember playwright and actress Oni Faida Lampley (1959-2008).

“Perhaps the hardest part was my fear that those who loved me would be disappointed if I ceased to be the do-it-all survivor…Over time, I let that go, too. I prayed, slept, cried and (don’t tell anybody) felt sorry for myself, and—lo and behold, the roof didn’t fall in!”

http://www.theonifund.com/biography.html#self

National Metastatic Breast Cancer Awareness Day is Oct. 13. Who will you remember?

This October, I will remember NC State basketball coach Kay Yow (1942-2009).

Yow had surgery for breast cancer in the summer of 1987, but the cancer returned in November 2004. In 2006 after being dx’d with liver mets she took a 16-game leave of absence, but returned to take the Wolfpack to the Round of 16 of the 2007 N.C.A.A. tournament.

http://www.alumni.ncsu.edu/s/1209/index.aspx?sid=1209&gid=1&pgid=546

National Metastatic Breast Cancer Awareness Day is Oct. 13. Who will you remember?

This Ocotber, I wll remember RivkA Matitya, an NY native who immigrated to Israel 21 years ago. She was diagnosed with DCIS in 2005. Two years later her cancer metastasized. From New York to Jerusalem and all points in between RivkA With a Capital “A” touched people. She always signed her posts “with love and optimism.”
A thousand people attended her funeral.
http://coffeeandchemo.blogspot.com/

National Metastatic Breast Cancer Awareness Day is Oct. 13. Who will you remember?

Tweets:

U Can’t Spell Metastatic Breast Cancer Without “Me”….But We Can’t Spell “Cure” Without “U”… Our Day is Oct 13:

http://mbcn.org/developing-awareness/category/13-things-everyone-should-know-about-metastatic-breast-cancer/

What do Roxie Roker, Eliz Edwards, Molly Ivins, Kay Yow & me have in common? Our Day is Oct 13:

http://mbcn.org/developing-awareness/category/13-things-everyone-should-know-about-metastatic-breast-cancer/

Is it over yet? (Photo courtesy of POB)

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19 thoughts on “Metastatic Breast Cancer Awareness: Let’s Create Some

  1. katherinembc says:

    http://www.breastcancerdeadline2020.org/act/deadline-toolkit/ByTheNumbers.html

    Breast Cancer Deadline 2020®
    By the Numbers: The Facts and figures
    Looking at Breast Cancer By the Numbers
    Breast cancer incidence/mortality

    * 2010 U.S. incidence of invasive and in situ breast cancer: women: 261,100; men: 1,970
    * U.S. incidence of DCIS is now 20 percent of all diagnosed breast cancers – a 7-fold increase from (1980) 4.8/100,000 to (2007) 34.6/100,000
    * U.S. incidence rate: 122.9/100,000
    * 2010 U.S. breast cancer deaths: 40,230 or 1 death every 14 minutes
    * 2008 global breast cancer incidence: 1.4 million women
    * 2008 global breast cancer deaths: 458,503

    In summary: Incidence has risen during the past 20 years from 1 in 11 to 1 in 8, now leveling off; mortality has declined slightly

    but a key point is incidence of stage IV breast cancer—the cancer that is lethal—has stayed the same; screening and improved treatment has not changed this.

    Why numbers make it seem like we’ve made more progress than we have:
    Mortality vs. Survival

    Mortality numbers tell the story more precisely than survival numbers, and screening skews the survival numbers. The more we screen, the more we diagnose and treat women with breast cancers that would not have been a threat to their lives (some DCIS, other slow growing invasive breast cancers, and others that are dormant or regressive); so it looks like survival for early stage breast cancer is 98 percent. This is only a 5-year survival number—and includes the 20-30 percent of women who will have recurrence and may die of the disease later. For Stage II and III, one-half to two-thirds will develop metastatic disease within five years and they are included in the 5-year survival statistic. Women die of metastatic disease, not primary breast cancer.

  2. nancyspoint says:

    Thank you for your voice, Katherine. We will raise awareness about metastatic breast cancer. We have to.

  3. Thank you for an excellent post! More needs to be done for metastatic breast cancer. I know about the Oct. 13 date, but I feel that only one day should not be devoted to people living with metastatic breast cancer. That’s why I kicked off October with my post about the loss of a good friend to mets (I just didn’t want to wait until Oct. 13). Here is the link: http://bethlgainer.blogspot.com/2011/10/faun-and-me.html

  4. Suzanne says:

    Hi Katherine and all the others following her blog-
    I have been following your blog for some time and have been a friend for years. As you know, I was diagnosed with BC in 2009 – stage 2B but I have many friends with Mets. You among them. I have a particular interest in getting more attention and funding to this issue of Mets. I would like women to understand that this is what our next step will be, if BC returns. In that light, I am on a live web cast this Thursday from 2-4:00 PM Central Standard Time. I will be talking about my book, answering questions which are called or emailed in and during the show I want to get on the subject of Mets. Will you help me by calling in with your expertise? You can log in to see it live at http://www.watch312.com and send in emails or questions at drsandylive@gmail.com or call in with a question or comment at 312-564-7375
    Keep writing. Help me to get the correct word out!
    Suzanne Zaccone
    suzez@aol.com
    http://www.arandominterruption.com

  5. katherinembc says:

    Fran Visco, NBCC’s national president, wrote recently: “When will we get serious about ending breast cancer? How about now? … It is time for a new approach and a refocus on our goal: not the goal of a new drug or a new way to find cancer. That is just not good enough. The goal needs to be the end of breast cancer. At the current rate of progress it could be 500 years before that happens. And that makes me very angry.”

    “This is the 25th breast-cancer awareness month,” Visco added. “We are being asked to celebrate that fact — which is symptomatic of the problem. Why do we try so hard to make breast cancer palatable, comfortable, pink? I really don’t feel like celebrating.”

    [thanks to POB]

  6. Kathi says:

    Love you, Katherine. That’s all I really have to say. My heart is so full of grief this year, I feel like we should be wearing black armbands, not pink ribbons.

  7. katherinembc says:

    …Which gets to the ugly, ugly truth that no one wants to talk about. There is no certainty with breast cancer. Once you have it, there is always a chance of recurrence. There is nothing a woman can do today —not even cut off her breasts — to completely eliminate her chance of dying of breast cancer. Despite the headlines in those women’s magazines, there are no foods that “fight” breast cancer. Exercise, a healthy diet, limiting your alcohol consumption might reduce your risk, but only a little. Breast self-exams do not reduce breast cancer deaths, no matter how well you do them.

    A woman does not get cancer because she did something wrong or wasn’t vigilant enough about screening. Nor does a woman survive breast cancer because she’s a “fighter” or has a positive attitude. If she survives it, it’s because she was fortunate enough in her misfortune to get a type that responded to treatment.
    –Christie Aschwanden

    http://www.lastwordonnothing.com/2011/10/06/breast-cancer%E2%80%99s-false-narrative/

  8. lago says:

    Katherine great post. I also feel Pinktober is about “saving the Ta Tas” What ever happened to saving lives. Some of us don’t have “Ta Ta’s” any more.

  9. [...] But there (are) plenty of coupons for pink products and lists of stockists.” (Check out ihatebreastcancer for more on metastatic breast cancer awareness [...]

  10. [...] Katherine’s blog she has listed a number of metastatic ‘bits and pieces’ that she is encouraging you to [...]

  11. katherinembc says:

    “October 13 is Metastatic Breast Cancer Awareness Day, and I can’t tell you how important it is that there is at least one day in October that is dedicated to acknowledging that not everyone is cured and not every cancer is found early. We need to stop congratulating ourselves on our progress and start focusing on figuring out why these women have not benefited from all the money we have raised. Reach out today to someone you know that represents the other side of breast cancer, the one that is not so pink. We will not have accomplished this goal as long as one woman dies of this disease!”
    Dr Susan Love

    http://blog.armyofwomen.org/2011/10/metastatic-breast-cancer-telling-the-whole-story/

  12. katherinembc says:

    “As I pass my 20-year anniversary as a breast cancer clinician and researcher, it is clear that the basic science and clinical trial output is at an all-time high. Whether or not this is due to increased awareness or to fundamental breakthroughs in science cannot be clear discerned, but in the last two decades, breast cancer specific journals and general journals have increased their publication quantity and quality exponentially. The impact of these findings on earlier detection, less invasive options for surgery, better assays to make medical decisions and newer life-saving treatments are very tangible.

    However, we are stuck in some areas without progress:

    > Advanced metastatic disease is no more curable than it was 20 years ago. Although these patients are living longer and better lives, the improvements are not very dramatic.

    > Disparities in outcome based on ethnicity and income continue, while narrowed in some areas.

    > We are still overtreating some patients and undertreating others – new assays are just starting to get implemented, but we have a long way to go in our quest to “personalize” medicine. ”
    —Debu Tripathy

    http://www.curetoday.com/index.cfm/fuseaction/blog.showIndex/debutripathy

  13. Donna Peach says:

    Wonderful entry on a tough and overwhelming topic that keeps returning. Always enjoy reading your site.
    Love and hugs,
    donna peach

  14. [...] And we want you to know about us. We are: Catriona Rachel Katie Jeanne Deanna Judy Susan Katherine Eileen Delaney Kristina Dirty Pink Underbelly Susannah And we remember: Sarah Emily Rebecca RivkA [...]

  15. [...] — she has a wonderful link to a Huffington Post article — which also lead me to this site where I found the video I posted above. Share [...]

  16. [...] to what is killing mothers, sisters, aunts, grandmothers and daughters—breast cancer metastases.http://ihatebreastcancer.wordpress.com/2011/10/01/metastatic-breast-cancer-awareness-lets-create-som… As you know, every year, 40,000 women die of metastatic breast cancer.  That number has not [...]

  17. [...] So, no matter what your diagnosed stage, you can (and many, many do) die of breast cancer because of metastases. Less than 5 % of the money going into research actually goes to what is killing mothers, sisters, aunts, grandmothers and daughters—breast cancer metastases.  http://ihatebreastcancer.wordpress.com/2011/10/01/metastatic-breast-cancer-awareness-lets-create-som… [...]

  18. [...] So, no matter what your diagnosed stage, you can (and many, many do) die of breast cancer because of metastases. Less than 5 % of the money going into research actually goes to what is killing mothers, sisters, aunts, grandmothers and daughters—breast cancer metastases. http://ihatebreastcancer.wordpress.com/2011/10/01/metastatic-breast-cancer-awareness-lets-create-som… [...]

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