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Today is Metastatic Breast Cancer Awareness Day – 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.

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.

19 Comments on “Today is Metastatic Breast Cancer Awareness Day – October 13”

  1. Facing Cancer Together October 13, 2013 at 5:52 pm #

    A cure for mets would be a very good step in pushing back cancer. It would be a huge step, actually. Well worth wishing for and working for, I think! ~Catherine

    • Susan October 13, 2013 at 5:58 pm #

      Yes a cure for mets would be a great step in pushing back cancer. Thanks Catherine!

  2. info@speakersponsor.com October 13, 2013 at 6:30 pm #

    Wow, I didn’t know all of these statistics, especially about the men who have it. Thanks for keeping Li’s memory alive and fighting on in her name.

    • Susan October 13, 2013 at 6:39 pm #

      It’s amazing how with all this “awareness” these true statistics get left out in October. We are all trying to change that. I’m glad you knew Li too! Thank you Julie for all that you are doing too.

  3. kymlucas October 14, 2013 at 12:01 am #

    Thanks very much for a thoughtful post on this important subject.

  4. bethgainer October 14, 2013 at 1:39 am #

    Beautiful and true post, Susan. I’m so sorry about Li’s death; as you know, I also lost a good friend to MBC, and I feel that loss each day. I’m so glad you and Shelby have each other.

    • Susan October 14, 2013 at 4:06 pm #

      I am so sorry about the loss of your good friend too Beth. There are so many deaths from MBC and each one is so heartbreaking, especially to family and friends. The numbers of deaths are staggering. I know that you are blessed with your beautiful daughter Ari.

  5. Ann Fonfa October 14, 2013 at 2:27 pm #

    Thanks for writing this story. It is very important that people understand HOW LITTLE progress has been made. I am particularly struck with
    ” 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”.

    And treatment is painful and leaves many short and long-term adverse effects (usually and MISTAKENLY called ‘side’ effects. See Annie Appleseed Project’s Handout to help Reduce Toxicities http://annieappleseedproject.org/images/HANDOUTNatural_Strategies_to_Reduce_Toxicities.pdf

  6. Miracle Survivors October 14, 2013 at 5:20 pm #

    Thanks again for your tireless advocacy for us metastatic breast cancer survivors. So sorry about your friend. I have lost so many friends to this disease that I think I can relate to how soldiers feel on the battlefield. Yet I do see hope on the horizon with each new drug that comes out. I’ve been on a targeted drug, Afinitor, which has been working almost a year. Every day counts and I am grateful for each of them.

    • Susan October 14, 2013 at 7:50 pm #

      Tami, even though I focused my attention to the loss of my friend Li, I also can relate to how soldiers feel on the battlefield because of the death of so many other fearless friends. I am so glad that the drug Afintor is working for you. You remind me of how much each day counts and with you I keep hope alive! I love your book, From Incurable to Incredible, and I look forward to your next book Miracle Survivors. I look forward to hearing more about people beating the odds of advanced cancer. I’m glad you didn’t listen to the Dr. who was recently indicted!

  7. vtashman October 15, 2013 at 1:02 am #

    Just saw this Susan. Great article as always. You really tell it like it is! We need to do something about it!

    • Susan October 15, 2013 at 3:05 pm #

      I really appreciate your positive feedback Vicki. Thank you!

  8. Heather Swift October 15, 2013 at 7:03 am #

    Reblogged this on takeawareness2action.

    • Susan October 15, 2013 at 3:08 pm #

      Thank you so much Heather for reblogging this. I am so grateful for you support!

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