CHEMOBRAIN.....In The Fog: PARTICIPATORY RESEARCH @DrSusanLove NEEDS OUR HELP #BCSM

Please circulate this widely to anyone and everyone you know who was ever treated for breast cancer. Help the Dr Susan Love Research Foundation develop a questionnaire which will become part of the Health Of Women Study. This is our chance to make sure all the right questions are asked. When enough of us share our experiences, meaningful research can be developed based upon what's really happening, and not just what others may think is happening.

Read the instructions. Simply submit the question. No need for (this is primarily a note for myself) long winded elaboration. Do share. And, if you have not joined the HOW study, now might be a great time to do that, too!

Thanks to my buddy, Christine doing exactly what is instructed in the message. She forwarded me the email. I cut and pasted the whole thing...

Here you go and let the questions fly!

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. If you haven't already, we need you to sign up for the Health of Women Study so that we can document your health, breast cancer diagnosis, and breast cancer treatment. We also 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.

Join us!