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Help Design Important Research

Posted 7/31/2013

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  I have long been a supporter of Dr Susan Love and her research foundation (www.dslrf.org). As you likely know, she is one of the "mothers" of breast cancer advocacy and can take responsibility and pride for much of what has been accomplished to educate women about breast cancer and stimulate activism and research. She is famous for her book, Dr. Susan Love's Breast Book, sometimes called "The Bible of breast cancer." She is also famous for her blunt desciption of the status of breast cancer treatment: Slash, Burn, and Poison.

  For some years now, she has been organizing, through her Foundation, an Army of Women who make themselves available for a variety of projects. This is a particularly tantalizing and important one: the chance to help design research that looks at what really happens to us, to our bodies, in the years after cancer treatment. The project will look at the side effects and problems we experience: joint pain, low libido, chemobrain, cardiac issues, etc. etc. What is unique is that women, survivors, are being asked to contribute to the design of the research, not just to be subjects in the research itself.

  Dr. Love is asking that we/you write and tell her about what you are feeling and experiencing. To make it more fun, she suggests that the submissions be framed like Jeopardy--e.g. "Is it normal to not care if I ever have sex again?" Here is the email that she sent; it contains important links to participate. And I hope that you do.

Breast Cancer Survivors: Help Us Develop a Questionnaire on the Collateral Damage from Treatment

Those of you who responded to my recent blog on the collateral damage from cancer treatment will remember that I said the Health of Women (HOW) Study was going to investigate the price of the current treatments to our bodies, our minds and our souls. In order to do this we need your help. We need you to help us develop a questionnaire that we can use to collect all the varied side effects from treatment. We have several questionnaires in development, including those that focus on exercise, diet, and the environment, and hope with your help to put one together on the consequences of breast cancer treatments that we can release in January 2014.
We are soliciting your suggestions regarding side effects from your surgical, radiation, hormonal and/or chemotherapy and targeted therapy. Although physicians and researchers have developed questionnaires in the past, there has never, to my knowledge, been a questionnaire developed by those who experience the problems. We are interested to learn about any symptoms or side effects that you have experienced related to your treatment, including joint pain, chemobrain, lymphedema, numbness, pain in the chest wall, sexual problems, and anything else that you've noticed. This is our chance to document what you are experiencing rather than just what the doctors THINK you are experiencing.
If you would like to help, we ask that you email us at how@dslrf.org. It will help us if you can, as in the game show Jeopardy!, put your response in the form of a question rather than a paragraph describing what you went through. For example, "Is it normal to keep forgetting things that were so easy to remember before my breast cancer?" or "Will the numbness in my toes ever go away?" Remember we will have the information about your health and cancer treatment from previous HOW questionnaires, so you don't need to repeat it.
Once you are finished, pass this email on to your online and in-person support groups and all the survivors you know! We need lots of input! We will pull all your questions together and make a questionnaire for survivors in the HOW Study. Once we collect the data and analyze it, we will let you and the world know what we find.
As many of you pointed out, this is a topic which we rarely talk about because we are indeed happy to be alive. That being said it is important for us to let the world know that there is a big price for the cure - not only in dollars but also in our bodies! We need to remind the medical world that there is a need to find better treatments with fewer side effects. And most important, we need to find the cause of breast cancer so that no one has to pay the price of survival.

Those of you who responded to my recent blog on the collateral damage from cancer treatment will remember that I said the Health of Women (HOW) Study was going to investigate the price of the current treatments to our bodies, our minds and our souls. In order to do this we need your help. We need you to help us develop a questionnaire that we can use to collect all the varied side effects from treatment. We have several questionnaires in development, including those that focus on exercise, diet, and the environment, and hope with your help to put one together on the consequences of breast cancer treatments that we can release in January 2014. We are soliciting your suggestions regarding side effects from your surgical, radiation, hormonal and/or chemotherapy and targeted therapy. Although physicians and researchers have developed questionnaires in the past, there has never, to my knowledge, been a questionnaire developed by those who experience the problems. We are interested to learn about any symptoms or side effects that you have experienced related to your treatment, including joint pain, chemobrain, lymphedema, numbness, pain in the chest wall, sexual problems, and anything else that you've noticed. This is our chance to document what you are experiencing rather than just what the doctors THINK you are experiencing. If you would like to help, we ask that you email us at . It will help us if you can, as in the game show Jeopardy!, put your response in the form of a question rather than a paragraph describing what you went through. For example, "Is it normal to keep forgetting things that were so easy to remember before my breast cancer?" or "Will the numbness in my toes ever go away?" Remember we will have the information about your health and cancer treatment from previous HOW questionnaires, so you don't need to repeat it. Once you are finished, pass this email on to your online and in-person support groups and all the survivors you know! We need lots of input! We will pull all your questions together and make a questionnaire for survivors in the HOW Study. Once we collect the data and analyze it, we will let you and the world know what we find. As many of you pointed out, this is a topic which we rarely talk about because we are indeed happy to be alive. That being said it is important for us to let the world know that there is a big price for the cure - not only in dollars but also in our bodies! We need to remind the medical world that there is a need to find better treatments with fewer side effects. And most important, we need to find the cause of breast cancer so that no one has to pay the price of survival.

To read more about the HOW Study: https://www.healthofwomenstudy.org/
Join us!

Dr. Susan Love

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