Metastatic Breast Cancer Awareness Day – Every Day and every October 13

MetsDay13We all know that October is Breast Cancer Awareness month. There’s pink everywhere and all sorts of breast cancer awareness campaigns. In 2009 Metastatic Breast Cancer (MBC) got one day for awareness. Thanks to the efforts of 9 metastatic patients and countless others, they got congress to designate October 13th as Metastatic Breast Cancer Awareness Day.  It’s a start. “Breast Cancer Awareness” without “Mets Awareness” is not awareness at all. Now we need everyone to be aware of MBC all year-long. Every day should be Metastatic Breast Cancer Day.

Ribbon_whitelinedpinkwashingpicEspecially in October (Breast Cancer Awareness Month) there have been lots of questioning of the words, the color and what really matters. There’s frustration in the breast cancer community because breast cancer has been painted with survivors and death rates trending in a favorable direction. Sadly when it comes to MBC and death rates we haven’t come very far.

For example in the United States alone in 1991 there were about 112 deaths from breast cancer a day. This year there are about 108 deaths a day in the US. While those 4 lives a day are very important people I don’t think that in over 20 years preventing 4 deaths a day is tremendous progress in this country. There are about 155,000 people living with MBC in the US a year. There are almost 40,000 deaths a year from MBC in the US and around 400 of these deaths are men.

545527_494545153891973_631458727_aAlmost 30% of all breast cancers become metastatic. Some start out with “mets” (about 6-10% of cases) but if you get breast cancer at an earlier stage there’s up to a 30% chance that you will become metastatic. Those who have MBC know this. We still don’t know the cause of many breast cancers and we also don’t know why breast cancer patients become metastatic.

MBC_Infographic_01_v14There is no cure for MBC. There are many drugs that can extend lives for years, but treatment is life long switching from drugs that work for a period of time until a drug no longer works. Every case is different and there are different types with some types more difficult to treat than others.

What we do know is that MBC kills very special people. When it comes to breast cancer, people’s stories paint the picture of what happens with this disease. One of them was my fearless friend Li Bailey. In our world of social media very few people knew her. She didn’t have a blog, Facebook page or Twitter account. She had Triple Negative (TNBC) MBC and there were fewer options for her treatment. She knew every detail of her case, and was a very sharp ePatient.

Li and I went through our primary chemo together at the same time. We got together a lot as friends and it was a relief that I wasn’t bald alone. We learned so much about breast cancer together. I had a local recurrence. Today I am NED (no evidence of disease). She had a mets recurrence on her birthday, February 19, 2009. She danced in to the light on January 6, 2012. She went through various treatment options that were wonderful when they worked. Having to change regimens is a harsh reality for anyone with mets. While my friend did not live as long as I would have liked with mets, there are so many cases with different outcomes. I have lots of friends that respond longer to treatments who are living with mets for a very long time.

Li had a wonderful ability of living in the moment with me on a great day. I’m not saying there weren’t some bad ones but we made a pact that on great ones we would be in the moment.

IMG_3171IMG_5232One of the best days was when Li got her dog Shelby as a puppy after we finished our primary chemo. I am so grateful that she chose me to take care of her dog. I loved visiting her and Shelby so many times. Shelby helps me every day keeping memories of Li alive. She is such a wonderful gift. I know Li would be proud of how well Shelby is doing, while she is a constant source of joy in my life.

There’s not a day that goes by that I don’t think of Li and all my mets sisters living and dying from MBC. I was very lucky that Li let me in to her life with mets and accepted my help. It’s so rewarding to able to help. Li helped me a lot too. She never missed being with me for my many surgeries and I was with her for hers. Having one day for MBC awareness is a start, but we have a long way to go and there should be many more days of awareness for MBC. As patient advocates we have to make metastatic research a priority. We must stop this terrible disease and prevent it from spreading to other organs. This research will hopefully lead to helping end all cancers.

Charity Navigator

Here is a great place that rates breast cancer charities to see if they are using donations for curing and preventing breast cancer. Below is an article from Charity Navigator including some of their ratings so you can see where your donations are being used. Many of us blog about “think before we pink”, while my breast cancer social media community that meets on twitter every Monday night from 9-10 Eastern Time, calls it #redefinepink, as well as my new favorite expression, “Pink Responsively”.  This article will help you make informed decisions for where to donate your money.  You can click on this link: Charity Navigator and use their search button to check on other charities as well as click on the charities mentioned below for much more information.

Charities Working to Prevent and Cure Breast Cancer

Breast Cancer Charities Rating
Dana-Farber Cancer Institute 4 stars
Breast Cancer Research Foundation 4 stars
The Rose 4 stars
Breast Cancer Connections 4 stars
National Breast Cancer Foundation, Inc. 4 stars
Living Beyond Breast Cancer 4 stars
Breastcancer.org 4 stars
Lynn Sage Cancer Research Foundation 4 stars
American-Italian Cancer Foundation 3 stars
Young Survival Coalition 3 stars
Breast Cancer Fund 3 stars
SHARE 3 stars
National Breast Cancer Coalition Fund 3 stars
Barbara Ann Karmanos Cancer Institute 3 stars
Susan G. Komen for the Cure 3 stars
Breast Cancer Prevention Fund 2 stars
American Cancer Society 2 stars
Prevent Cancer Foundation 2 stars
The Breast Cancer Relief Foundation 1 stars
John Wayne Cancer Institute 1 stars
United Breast Cancer Foundation 0 stars
Walker Cancer Research Institute 0 stars
American Breast Cancer Foundation 0 stars
Y-Me National Breast Cancer Organization DA
Breast Cancer Society, Inc DA
Coalition Against Breast Cancer DA

Although breast cancer receives the most attention during Breast Cancer Awareness month each October, charities work all year long to raise funds for the prevention, treatment, and cure of this devastating disease. All throughout the year people have the opportunity to participate in various walks, runs, and other special events raising money to fight breast cancer. The pink ribbon has become the symbol for awareness of the disease and can be found adorning everything from soda cans to sneakers.  But how many of us stop to examine those pink ribbon charities soliciting our support?

At Charity Navigator we’ve done the work for you. We’ve reviewed the financial health of over two dozen of the largest charities working to fight and prevent breast cancer in America. Although these charities have been very successful at generating support, together raising nearly $1.7 billion annually in contributions, the disparity in their financial health is enormous.

The good news is that several of these charities efficiently utilize donations to pursue their mission of curing and preventing breast cancer. However, others will astound donors with their inefficient operations and low marks for Accountability & Transparency. For example, one charity spends less than 2% of its budget on fundraising expenses, while another spends nearly 98%! Many of these charities spend at least 80% of their budgets on programs and services, while four spend less than 50%. And while more than half of them earn high ratings for their commitment to Accountability & Transparency, three of them earn 0-stars and two earn just 1-star in this area.