Stage IV ad for Komen - Is this a crack in the pink wall?

I copied below a blog entry I wrote this week for the MBCN blog.

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

Andrea Mitchell

The cancer blogs and message boards are buzzing today with the news that Andrea Mitchell has an early stage cancer and announced it on her program.

http://news.yahoo.com/blogs/cutline/nbc-andrea-mitchell-breast-cancer-191413850.html

I'm happy for her that it was caught early--after all I was in that same place 19 years ago with a "100%" cure and am now stage IV--0% cure. I don't want to bring you down, but I need to say a few things because I don't think the general public, the media and even much of the breast cancer community understands the strong, visceral reactions that a stage IV metastatic patient feels when they hear a story like this.

1. I'M CURED:  I cringed immediately when Andrea said she "had" breast cancer. She still has it and needs to ask her doctors the definition of a breast cancer "cure".

2. EARLY DETECTION: Her positive statement that "This disease can be completely curable if you find it at the right time" is false. 20-30% of those with early stage cancer will have a recurrence, which can be metastatic.

For those of us with stage IV, we read into Andrea's statement that anyone with a more advanced diagnosis has only herself to blame. But not all cancers are detectable on mammograms and even with annual mammograms and annual checkups, people get recurrences, often metastatic.

3. BREAST CANCER FUNDING: Focusing exclusively on prevention and early detection, pink ribbons and survivors has skewed the fundraising and the public perception of this disease. Many people (including mbc'ers) are tired of Pinktober and if you were to ask the man or woman on the street what they thought of breast cancer, they might say:

Everybody seems to get it. It's completely treatable and curable if you're positive and have detected it early. It's one of the "better" cancers. It gets too much attention and too much funding.

Yet, 155,000 in the US are living with metastatic breast cancer, 40,000 a year die from it. It is the number one cancer killer of women in the 20-59 age group, the leading cause of cancer death for women worldwide and the 2nd leading cause of death by cancer in the US for women, after lung cancer.

And only an estimated 2-5% of breast cancer research funding goes to studying metastases. It's unbelievable how misguided and misdirected it's all become!

And someone like Andrea Mitchell who is a position to report and research the full story of breast cancer disappointingly resorts to the same cliches.

My 2 cents. Thanks for reading.

If you want more information, read:

www.mbcnetwork.org
plug for the home team--the organization I work with

http://www.breastcancerdeadline2020.org/know/31-myths-and-truths
National Breast Cancer Coalition myths and facts about breast cancer--you'll be surprised!

http://ihatebreastcancer.wordpress.com/
excellent, funny, perceptive blog

PS I revised this post after calming down and taking a deep breath last night!  Whew! Thanks for reading.