Komen campaign for MBC: Commitment?

Here is the latest Komen ad : “Komen’s Commitment to Women Living with Metastatic Breast Cancer.” We at MBCN are happy that Komen is continuing its first formal effort to acknowledge people living with metastatic breast cancer and featuring people like us in their ads. (Ironically, few people realize that Susan G. Komen died from metastatic breast cancer.)

We all have a story to tell and we can be inspired in writing the story and in reading others’ stories. Our organization actively solicits stories such as those of Cindy and Bridget, the two people  featured in this Komen ad.  Some stories are inspiring, as those of Cindy and Bridget; however, many stories are of perseverance in the face of uncertainty and discomfort.

Like Cindy, I love to read stories by people who are  living with metastatic disease for a long time–MBCN even has a special section showcasing the stories of those living with mets for 10 or more years. (See http://mbcn.org/get-involved/category/10-years/) But it is an awfully small section– living with MBC for 20 years or even 10 years is rare. While I applaud these uplifting stories, I am a realist at heart. We can’t exaggerate the progress that’s been made in metastatic disease. Despite these outliers and despite our own advocacy efforts, metastatic breast cancer continues to claim 40,000 lives annually in the U.S.; a figure that remains largely unchanged for the past two decades.

Moreover, Cindy’s doctor who said metastatic disease is a marathon vs. a sprint is absolutely correct. But, the Komen ad makes a confusing connection between Cindy’s three clinical trials and being on treatment for life. ALL patients with metastatic disease are on treatment for life; some are good candidates for clinical trials and some aren’t. But they will all get some kind of lifelong treatment. Also, men do get metastatic breast cancer–so the “estimated 155,000 women living with MBC in the U.S.”  should actually read “women and men.”

And then there’s Komen’s commitment to research. Komen proudly announces that they spent $35 million in funding metastatic research over the last six years. That’s great! Millions! Well, wait a minute. This is $35 milllion vs. the $2 billion of the total Komen pie for the last six years. (That’s not a typo: “Billion” is correct.)  Therefore, Komen is spending 1.7% ( round it up to 2%) of the total funds raised for the purpose of metastatic research.

So for every $10,000 raised by Komen, about $200 goes to research to help Cindy and Bridget and all of us with metastatic disease.

In other words, if breast cancer funding were a giant Monopoly board, we are the “Go” square. Everytime Komen passes our corner with $10,000, MBC research collects $200. Well, $200 is nothing to sneeze at, but we’ll never win if we don’t get some real property. Please don’t keep passing us by. Stay awhile–make some real MBC investments. Imagine what we could do if we had the research equivalent of three hotels on Illinois Avenue!

So thank you, Komen, for including our stories and  acknowledging October 13 as Metastatic Breast Cancer Awareness Day. It’s a good start, but we hope it’s just the first step in a plan to really commit to stopping metastases. The best way to honor all of us with MBC and those who are no longer with us, is to seize the day–October 13– as an opportunity to commit to a substantial increase in metastatic research funding. Komen, are you listening? We look forward to your October 13 press release.

Ginny Knackmuhs and Katherine O’Brien

Beyond Pink

reprinted by permission of the author from http://occupyhealthcare.net/2012/09/beyond-pink/

By Laura Wells, Stage IV Metastatic Breast Cancer Fighter, written  in honor of the women who are fighting and the women we are losing.

When I was first diagnosed with breast cancer, I found it hard to embrace the “Pink Ribbon” and all it stood for. I was not happy to be joining the club, but I was also uncomfortable with becoming an instant advocate for a cause, simply because I would now benefit from it. It seemed selfish and hypocritical.

I began to truly identify with “Pink,” when I recurred at stage IV, for I would have breast cancer forever, be in treatment for life. I finally, fully embraced “pink.”

Ironically, with advanced, metastatic disease, all the great things “pink” stood for, no longer applied to me. I was beyond “prevention,” beyond “cure,” beyond “survivorship,” beyond “pink.”

I learned that many women feel left out, each October, during National Breast Cancer Awareness Month, knowing our stories will not be told. No one will hear of the stage IV women who had died that year, except perhaps, the rare celebrity, or as a matter of statistics.

But, the average metastatic woman will be nowhere. There will be no article about her in the newspaper, no story on the news. There will be no TV special, introducing the world to a lifetime patient, who gets up every day, facing constant tests and treatment forever. We will not hear of the fear that an aching back means bone involvement, which causes a woman to start literally breaking, or the worry that a headache may be caused by brain involvement, and not merely stress. There will be no speakers, at the numerous awareness walks, to tell about conversations with their children, which begin with, “Will you still be here when…?”

The stories will be of “survivors”, women diagnosed “early”, and “cured”. We will hear about famous women who fought the earliest stage cancers and SURVIVED. And the speakers at the walks will promote awareness, and prevention, and survivorship.

I understand the need for this cheerfulness, and these stories of survivorship. I know how important, how necessary it is to be told that, especially in your case, there is hope for a cure.

But, I am beyond that definition of hope. My hope is for clean scans, and new treatments that work so well, I am still alive to attend my daughters’ weddings and meet my grandchildren. I hope to put off as long as possible, leaving behind a husband, who is grieving the loss of his wife.

My breast cancer is no longer just pink. It now, includes gray, the color of nothing – the nowhere land where I live, no longer a survivor, but a fighter, never giving in, never giving up. And, black, the color of death, for surely, one day, my fight will end.

And the problem with “pink” is simply that, with all the awareness it generates, no one is aware of stage IV cancer, the cancer that kills. And no one is prepared to join this club, which is beyond pink, because it will not be spoken of, for yet another year.

Laura Wells lives in Costa Mesa, CA, with her husband and two of her three daughters. She is writing a book about her experiences with metastatic disease and working to raise awareness of the unique needs of metastatic breast cancer patients. She blogs at http://www.Mystage4life.blogspot.com.

Houston, we have a problem: One woman’s mission for MBCAwareness Day

Theresa Tee Palomares is a bundle of energy, a woman on a mission to raise awareness of metastatic breast cancer. She looked at her own community of Houston and noticed there was a problem. Most people do not know about metastatic breast cancer (also called Stage IV) or about October 13 being designated as Metastatic Breast Cancer Awareness Day.  She immediately took action,  found the mayor’s address on the City of Houston website and sent her this letter:
Dear Mayor Annise Parker:

In supporting the month of September with the Teal colors for Ovarian Cancer Awareness and you will probably follow suit with Pink in
October for Breast Cancer Awareness, were you aware that there is one day which is given for Stage IV Breast Cancer women and men-yes, only one day!

Can you please change the lights on that day for us? Maybe Pink and Black or just Black because society has swept us under the rug-you see, less than 3% of Komen funds are given for Stage 4 Metastatic Breast Cancer, the rest is earmarked for awareness, prevention and “PINK” advocacy, but what about us? Please follow this link http://mbcn.org/developing-awareness/category/house-resolution-senate-resolution/#senate  to the MBCN.org website. This is the Senate Resolution enacted in 2009, designating October 13, as National Metastatic Breast Cancer Awareness Day!

Please take the time to support this as 40,000 women and men are dying each year with no cure in sight-no cure at least for the Stage 4 community.

Thank you for your support.

The mayor’s team was very responsive and things moved quickly and smoothly, with only a few small glitches. The City of Houston would only consider a request from a non-profit group and not an individual.  They wanted to know what colors to use. Theresa wasn’t sure that turning off the lights completely would get enough attention, so she worked with our sister organization, Metavivor, and decided to light up Houston with the Metavivor colors of teal, green and pink. October 13 was not available, but the 14th and 15th were open. (Apparently there are many, many organizations that request lighting to symbolize their causes.)

Theresa was not deterred and is now planning on being at City Hall on October 13, 14 and 15, camcorder in hand, discussing metastatic disease with passers-by and distributing MBCN pamphlets and copies of the 2009 Senate Resolution for October 13. “I’ll just tell everyone we’re so pushed into the shadows that we couldn’t even get recognition on our one day – October 13,” she quipped.

Theresa invites all Houston area metastatic patients and supporters to come out and join her at City Hall each evening the weekend of October 13-14-15. You can email her at: theresa.palomares@facebook.com

When asked what she would advise others who want to follow her lead, Theresa said to start in your own community or state.

“If Houston— a large metropolis of over 2 million citywide, 4 million county wide with one of the largest medical centers in the United States —was not aware of October 13th, how many more cities and towns are not aware? ONE PERSON can make a difference, so please be that one person to light the fire.”

Email your mayor, suggest changing the lighting if they use it or suggest passing a resolution to honor October 13 as Metastatic Breast Cancer Awareness Day. If the community has a program on breast cancer, ask to participate in it, and use your voice to educate people about metastatic disease. Email us at mbcn@mbcn.org and we can answer your questions and supply pamphlets, t shirts and information. For other suggestions see our MBCA advocacy kit.

Thanks, Theresa!

A husband’s eloquent letter to the editor for Metastatic Breast Cancer Awareness Day

Judith Christensen and her husband William travelled to Washington DC in 2009 with the MBCN team to lobby Congress for the first National Metastatic Breast Cancer Awareness Day. And, they continue to advocate for greater awareness and understanding of metastatic disease. Judith shared this letter that her husband just sent to their local newspaper–a heartfelt statement of the reality and needs of the metastatic community from a concerned husband. (Doesn’t get any better than that!)

Dear Editor:

I read your column about featuring stories dealing with breast cancer in your newspapers during the upcoming breast cancer awareness month. As you noted most people know someone who has been affected by breast cancer. They certainly are already aware of breast cancer. One in eight women (and a not an insignificant number of men) will be diagnosed with breast cancer. 30% of that group at some point will have to deal with breast cancer that has metastasized. That is the real killer. Cancer in the breast is not lethal; it is when it works its way to other parts of the body (liver, brain, bones), that it becomes fatal.

My wife, Judith, has lived with metastatic breast cancer since her initial diagnosis almost 8 years ago. She is being treated at Dana Farber, participating in a clinical trial for almost 7 years. She is fortunately a statistical outlier since life expectancy averages about two and a half years post metastatic diagnosis. She, like all those with metastatic disease, will be on one form of treatment or another for the rest of her life. There is no time free from treatment. There is no cure.

In 2009 we worked with others in the metastatic breast cancer community to raise awareness about this dark corner of the larger breast cancer community. Working with members of congress we were able to have October 13 designated as National Metastatic Breast Cancer Awareness Day. I have attached a copy of the Resolution as passed by the United States Senate for your information and use. Many state and local governments (including here in Plymouth) passed similar resolutions.

It is so important that this group of people dealing with metastatic disease not be isolated or ignored. Additional research funding and funding for treatment should be focused on the needs of this group. A lot has been done to raise awareness of breast cancer in the broadest sense. More needs to be done to deal with the deadly and fatal side of the disease. I would urge you to focus some of your efforts on raising awareness about metastatic breast cancer during the month of October. It is a job that needs doing.

Thank you for focusing on the issue of breast cancer. Please take it a step further and deal with this critically important issue as well.

William Christensen

26 Forest Edge

Plymouth, MA 02360

(508) 209-1011

thechristensens26@comcast.net

Stage IV Ad from Komen – Is this a crack in the pink wall?

I was absolutely shocked to see this ad in the October issue of Prevention magazine:

This has to be the first time that Komen has publicly acknowledged Stage IV as part of their marketing campaign. Hopefully, Komen will have more ads about Stage IV in October.

Organizations are slow to change and whether this is partly due to the Komen organizational shakeup or the Metastatic Roundtable Komen hosted last February to seek information from 10 metastatic breast cancer patients, it is a welcome, small step forward and one that many of us would never have anticipated.

The ad, of course, is certainly not perfect, as it seems to imply that Bridget would not be surviving 7 years without her active, hopeful personality or her doctor’s ‘fighting’ for her.  Does that mean that those who died sooner had the wrong medical team or the wrong personal attitude? Certainly not.

Call me crazy, but maybe some day we’ll actually see a Komen ad that says this:

“The true source of HOPE for metastatic disease is research. That’s why we at Komen are dramatically increasing funding for research into the cause of metastases (the spread of cancer) to stop it in its tracks and save the lives of the estimated 155,000 women and men living with metastatic or stage IV breast cancer in the US, as well as the lives of 30% of early stage survivors who will have metastatic recurrences in the future.”

What should be our reaction now? I think we should be open and supportive of the change at Komen. Contact your local Komen organization and let them know you are metastatic (or Stage IV) and appreciate the metastatic support cited in the ads and hope Komen will be increasing funds for research into the causes and process of metastasis.

I know this will be particularly difficult for many of us who have deep feelings of estrangement and resentment toward Komen and the pink ribbon culture. But some within the Komen organization are trying to change things and that needs to be encouraged and supported.

“A journey of a thousand miles begins with a single step.”

(Lao-tzu, Chinese philosopher)

Ginny Knackmuhs

MBCN Board member