December 2015 Community Newsletter

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Welcome to the December 2015
Community Newsletter!

In this issue:

  • My Profile: What Are the Benefits?
  • Member Stories: Members Share Their Genetic Testing Stories
  • Spanish Community Celebrates 1,000 Members
  • Meet Wendy, Spanish Community Member
  • Inspirational Photos From the Community
  • Results of the Hormonal Therapy Survey
  • A Note From Hope Wohl, CEO

My Profile: What Are the Benefits?

You may have seen some changes to the My Profile area, including more diagnostic and treatment options for you to choose from. Based on the information you've provided in your My Diagnoses, My Treatments, and Personal Info areas, we're sending you articles, research updates, and podcasts based on your unique situation. Also, if you choose to make your diagnosis and treatments public, this information will automatically appear in the signature line of your Discussion Board posts so you can quickly meet others in a similar situation.



Don’t forget: When you learn anything new about your diagnosis or your treatments start, end, or change, be sure to update your profile so we can continue to provide you with the information that's right for you. Fill out your Profile now >>

Member Stories: Members Share Their Genetic Testing Stories

Most people who develop breast cancer have no family history of the disease. However, when a strong family history of breast and/or ovarian cancer is present, there may be reason to believe that a person has inherited an abnormal gene linked to increased risk of breast cancer. Some people choose to undergo genetic testing to find out. Members of our Community share their stories about deciding to have genetic testing done and how it has affected them.

bc31"Instead of making me scared of the possibility of developing other cancers, I left feeling empowered that now I have more people looking out for me and tools in place to monitor my health." Read Bc31's story... >>

chisandy"Do I resent having had to go through all this worry for the 2 weeks it took to get my results? Not at all. Knowledge is power, either way it turns out." Read ChiSandy's story... >>

queen-celeste"It was only after reading up on it that I learned that being Ashkenazi [Jewish] was a risk factor. No doctor, nurse, or mammogram technician had ever suggested or even mentioned genetic testing to me. I don’t think that any of them knew what 'Ashkenazi' is." Read Queen_Celeste's story... >>

Read these stories and more from other members sharing their genetic testing stories >>

Want to share your story? Email or join our Discussion Boards >>

Spanish Community Celebrates 1,000 Members

The Spanish Discussion Board Community was launched in 2012 to serve Spanish-speaking women and men all over the world who are managing a breast cancer diagnosis, treatment, and recovery. Just as in our English Discussion Board Community, the support found among the many forums and topics offers a unique perspective to those looking for answers.

We are proud to announce the Spanish Community has recently reached over 1,000 members! We look forward to increasing this number in the many years to come -- can you help? If you speak Spanish and would be willing to help answer questions and give support to our Spanish Community, please join the Discussion Boards en español! Or, feel free to share this information with family and friends who could benefit from this very valuable resource! Join Foros de discussion >>

Meet Wendy, Spanish Community Member

Wendy is a Spanish Discussion Board Community member who has graciously offered to share her inspiration. She has been very supportive of others in the Spanish Community: answering questions, offering help and suggestions, and bringing positivity to many members. We thank Wendy for sharing!

wendy“Now it's time to continue life with a new vision. Committed to enjoy every moment, to make every new minute of life worth more than the last minute. Also, regardless of our borders and language, I would like our motto to be: 'Fight for those who did not have a chance to fight.'” –Wendy

Read Wendy’s story in English >> or in Spanish >>

Inspirational Photos From Our Community

Our boards are chock-full of some really great photographers sharing their perspectives from all over the world. Here are just a few of the inspiring photos taken from our talented member, GmaFoley, of the Pacific Northwest, from the Retreat for Peaceful Contemplation thread! Enjoy!





For more inspirational photos, or to share your own, join the Retreat for Peaceful Contemplation thread >>

Results of the Hormonal Therapy Survey

Taking hormonal therapy medicines to treat hormone-receptor-positive breast cancer is a long-term commitment, which can be a real challenge.

We surveyed our Community on what hormonal therapies they are taking, what techniques they are using to help them stick to their treatment plan, what are some of the reasons they have stopped or switched hormonal therapies, and how much support they are receiving from their healthcare team and otherwise.

Attached is a PDF of the raw findings, which includes responses from 243 members. What the results show is that side effects are, not surprisingly, the primary reported reason to switch or stop hormonal therapy and that members overwhelmingly feel that they could use more overall support from their medical providers around this issue.

The question for us, however, is how can we better support our Community members to cope with these common problems during the 5- to 10-year commitment, to allow for the best possible outcomes? Would a forum called Help Me Stick With My Treatment be a good idea, for example? Take a look at the data, and please make some suggestions on this thread >>

Also, you may want to look at this section on our site called Staying on Track With Hormonal Therapy >>

Please note: We neglected to add vaginal dryness as a side effect, so it is not in the summary chart. MANY women wrote that in the comments, and we apologize. Also, all respondents answered the last question very similarly, which was asking the one thing that motivates them to stay on the hormone therapy treatment. No surprise, it was to reduce the likelihood of recurrence. Again, we look forward to hearing your thoughts! >>

A Note From Hope Wohl, CEO

Dear Community friends,

As we move deeper into the holiday season, with Thanksgiving behind us and the December and New Year holidays ahead, I reflect on the challenges that this season brings for so many of us. My holiday wish for each of you is that you be surrounded by whomever and whatever brings you joy, peace, and happiness.

I know I speak on behalf of all of my colleagues at when I say that you inspire us every day as you share knowledge, wisdom, concerns, dreams, disappointments, celebrations, and caring support in our Community. We are honored to be part of your life, and we thank you for all you are doing to help us achieve our mission -- of helping each of you.

I wish you a holiday season filled with love.

With deep gratitude and warm wishes,


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