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Topic: MBC Connect patient registry. Important. Check it out.

Forum: Stage IV/Metastatic Breast Cancer ONLY —

Please respect that this forum is for members with stage IV/metastatic breast cancer only. There is a separate forum for caregivers and friends: Caring for Someone with Stage 4 or Mets.

Metastatic breast cancer (MBC; also called stage IV) is breast cancer that has spread to other parts of the body, most commonly the bones, liver, brain, or lungs. Metastatic breast cancer can be treated but not cured. Metastatic disease is NOT hopeless. There are a wide variety of treatment options for metastatic breast cancer, and new medicines are being tested every day. More and more people are living life to the fullest while being treated for metastatic breast cancer.

Note: Please contact your doctor for any specific concerns about symptoms you are experiencing or your course of treatment.

Learn more about living with MBC.

Intro medically reviewed by: Brian Wojciechowski, M.D.
Last review date: November 22, 2020

Posted on: Oct 16, 2018 12:56PM - edited Dec 19, 2018 10:05AM by Moderators

Moderators wrote:

logo2

Let's accelerate metastatic breast cancer research together.

MBC Connect is an interactive, web and mobile-friendly patient registry, where you can share information about your MBC disease history, experiences, and quality of life. Learn more and Join the Registry here: MBC Connect

Note: Available in English and Spanish


MBC Connect is an initiative led by the MBC Alliance. The MBC Alliance was formed in 2013 and is the largest coalition in the U.S. focused on metastatic breast cancer. The membership comprises nonprofit organizations, pharmaceutical and biotech companies, and individual patient advocates or patients living with MBC.

info@mbcconnect.org or call (646) 497-2695

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Oct 27, 2018 12:14PM GG27 wrote:

US only, Canadians need not apply. :(

Dx 10/2008, IDC, Both breasts, 3cm, Stage IIB, Grade 2, 3/9 nodes, mets, ER+/PR+, HER2- Surgery 1/8/2009 Lymph node removal; Mastectomy: Left, Right Chemotherapy 2/1/2009 Other Radiation Therapy 7/5/2009 Whole-breast: Breast, Lymph nodes Dx 5/14/2014, IDC, Both breasts, Stage IV, metastasized to bone, 9/20 nodes, mets, ER+/PR+, HER2- Chemotherapy Doxil (doxorubicin)
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Dec 18, 2018 10:15PM Chemokaze wrote:

I cannot find someone to contact on the MBC Connect page, but maybe I’m missing something, but the survey only asks when your primary breast cancer was diagnosed. They don’t ask for the date when MBC was diagnosed, so when you look atthe pie charts/data analysis at the end of all the surveys, the length of time known for MBC is incorrect!

10/2018: NEAD; 7/2018: Onward to Verzenio, Zometa, Faslodex, & CyberKnife to single met to L4 spine. Dx 9/1996, IDC, Left, Stage IB, Grade 3, 0/21 nodes, ER+/PR+ Dx 5/2016, IDC, Right, Stage IIIC, Grade 2, 14/21 nodes, ER+/PR+, HER2- Dx 6/2018, Stage IV, metastasized to bone
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Dec 19, 2018 10:00AM Moderators wrote:

Thanks, Chemokaze, It was designed by the MBC Alliance, to which Breastcancer.org is a member. Either we can pass that along, or you can reach out to them directly: info@mbcconnect.org or call (646) 497-2695

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