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Are You or Someone You Know Living with Metastatic Breast Cancer? We Need Your Input!

Posted By Jean Rowe, LCSW, OSW-C Program Manager On September 9, 2013 @ 1:20 pm In The Business of Breast Cancer,YSC SYNC - Survivors | No Comments

Voice-Megaphone [1]Have you ever been told by a fellow breast cancer survivor: “You went from stage I to stage IV? I don’t want to hear that!” Are you tired of the question: “How long will you be in treatment?” Do you feel isolated or ignored by researchers? Are your family and friends desperate for guidance on how to help you?

All the feelings and problems above were expressed to me by just ONE of the young women with metastatic breast cancer (MBC) that YSC serves. Feedback like this (read more below [2]) and from the first YSC Research Think Tank [3] meeting earlier this year is the driving force behind YSC’s new survey, It’s About You: Getting Insights From Young Women with Metastatic Breast Cancer [4].

YSC wants to know what YOU think you need, so we are asking detailed questions about your current situation and what has and has not worked for you. We want to get at the roots of the problems young women with MBC face and provide the breast cancer medical, research and support communities with in-depth information to help them identify and create impactful interventions to significantly improve your quality of life and fulfill your emotional needs.

 

If you are a young women living with metastatic breast cancer, please take our survey here [4].

http://www.surveymonkey.com/s/MyMBCYSC [4]

If you know a young woman with metastatic breast cancer, please share this survey with her. Use the Facebook or Twitter buttons above or email her the URL.

 

We will be sharing the results from this survey in public forums and scientific meetings, including ABC2 – Advanced Breast Cancer Second International Consensus Conference [5] being held this November in Lisbon, Portugal. Make sure your voice and needs are heard at this conference by responding soon.

If you have any problems with or accessing this survey, please contact Jean Rowe by email [6]or phone at 317.417.9188.

Thank you!

P.S. YSC appreciates your input and will provide a thank-you gift to all young women with MBC who complete this survey.

 

Why is this important?

The following is from Kim, a young woman with MBC who is a YSC constituent and volunteer.

I am one of many young women living with metastatic disease. It’s an uncomfortable place to be. Sadly, we all know that very little research dollars go towards metastatic research, so that leaves a lot of us wondering if they (big researchers) even care about us. I try to navigate day-to-day life with this disease. As a single woman with no kids, I try to find my place in this world despite a big dark cloud over my head.

I realize that other than my fellow metastatic friends, no one can fully understand what it feels like. I sought out a support group only to be told by a woman with early stage breast cancer “you went from stage I to IV? I don’t want to hear that?” Neither did I, and I don’t want to live it. When I meet people and they learn of my disease they respond “but you look great” or “but you have hair.” Then there is “how long will you be in treatment?” Or my favorite “at least it’s just breast cancer, that’s curable, right?” No, sadly, it is not. No one understands.

I hope that by giving young women living with mets a voice, a place to fully express their experiences with honest and sincerity, YSC can shed light on what it is like for us every day. I also hope that the results can provide guidance to our friends, family, doctors and researches on how to help us find our way through this disease and a level of understanding for the burden that we bear.

 

 


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URL to article: http://blog.youngsurvival.org/are-you-or-someone-you-know-living-with-metastatic-breast-cancer-we-need-your-input/

URLs in this post:

[1] Image: http://blog.youngsurvival.org/wp-content/uploads/2013/09/Voice-Megaphone.jpg

[2] read more below: #story

[3] YSC Research Think Tank: http://blog.youngsurvival.org/?p=2624

[4] It’s About You: Getting Insights From Young Women with Metastatic Breast Cancer: http://www.surveymonkey.com/s/MyMBCYSC

[5] Advanced Breast Cancer Second International Consensus Conference: http://www.abc-lisbon.org/

[6] email : mailto:jrowe@youngsurvival.org

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