A daughter’s story

In 1999 my mother Hong was diagnosed with Stage II Her 2 positive breast cancer. In 2001  it returned and in 2009 after a long battle, my mother passed away. I am thankful I had such a courageous mother and of the many good moments we had in those years. However, as an immigrant family and as the caretakers of a patient who did not speak English fluently, we had difficulty navigating the labyrinth of metastatic breast cancer treatment and at times were incredibly confused and isolated.

I can only imagine now how incredibly scared my mother must have felt when she learned her cancer had returned at age 40, less than 2 years from when she was diagnosed. None of us knew that breast cancer could return or that when it did, it would no longer be curable. I can only imagine how she felt as my father reluctantly translated what her oncologist said: you now have mets to the spine, you are Stage IV and there is no cure for you. I was 11 and my brother was just 2.

In the years following we tried to do our best to obtain the best care for my mom. It was a challenge translating the types of pain she described to doctors and nurses. Reading scan reports often led to dictionary searches and my father or I were always required to accompany my mother to appointments to translate. Additionally, culturally speaking, patients in China are less aggressive in patient-physician interactions than those in the US where patient self-advocacy is encouraged and we were uncomfortable questioning oncologists, at least initially.

The most challenging areas were obtaining accurate information on treatment and clinical trials for metastatic breast cancer and finding support. Despite the Pink movement and the focus on breast cancer in hospitals, we just could not find complete information on metastatic breast cancer treatment specific to Her2. The language barrier did not help. We knew of Herceptin and we would hear of certain options such as taxanes and platinums but we didn’t have an understanding of all the treatment options.

Finally, during the duration of my mother’s battle with metastatic breast cancer, we weren’t able to find other Stage IV folks to connect with and did not feel like we had a voice. After neither the Chinese language support group nor the hospital support groups my mother found had any Stage IV members, it dawned on me that metastatic breast cancer is still in the shadows. This past month I found MBCN. I am glad that I am now able to share my story and I hope that collaborative efforts will bring more attention and research funding to this disease.

Sue (Shuyang) Yao

MBCN volunteer

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9 Responses to A daughter’s story

  1. Colleen Hofmeister says:

    Sue,
    I was so very sorry to read your family’s experience and can’t imagine how scarey and frustrating the whole situation must have been for you. To hear that you are now a volunteer for MCBN is extraordinary; you are truly making your mother VERY proud. I, too, am living with metastatic breast cancer and had two young children when I was diagnosed. I can tell you firsthand that seeing my children grow into happy, productive adults is the ONLY thing that is important to me and I will do anything I can do to be here for that event. However, if my time comes before then, I hope and pray that they have the strength and fortitude that you have demonstrated. Know that there are many of us who are living with metastatic breast cancer who are here for you and know what you have been through. You’ve just found thousands of adoptive mothers! Be well, my dear, and thank you so very much for sharing your story.
    All my love,
    Colleen

  2. katherinembc says:

    Reblogged this on ihatebreastcancer and commented:
    Sue Yao was 11 years old when her mom was diagnosed with metastatic breast cancer. Her mother, Hong, did not speak English, Sue and her father had to translate each appointment and scan. Sue’s family struggled to find information on HER2 positive breast cancer. If you are HER2 positive, please see this support group: http://her2support.org/vbulletin/. Sue, I hope your family is doing well–thank your volunteering with MBCN!

  3. Sue, you are an awesome daughter and spokesperson, thank you for sharing your story and helping to shed light on the shadow of MBC. I found you via Katherine’s blog (thank you Katherine)! I agree, your mother would be so very proud of you and the work you are doing!
    Blessings,
    Renn

  4. Thank you for sharing your experience – your mother’s legacy lives on through you. I am so sorry for your loss. My children may also face a loss (of me) when they are teenagers. Your ability to move forward despite a traumatic loss is a wonderful reminder that no matter how profound the loss, life can continue to be rewarding and fulfilling to those still living. Welcome to MBCN. Best, Joani

    • Sue Yao says:

      Joani, thank you for allowing me to be part of MBCN. I look forward to the day no children have mothers battling this disease. I’m excited to continue volunteering.
      -Sue

  5. Joan says:

    Sue,

    You are a brave, young woman and went through a lot in supporting your mom and family during her illness. Thank you for sharing your story of the challenges metastatic women face in dealing with stage 4 breast cancer and for becoming involved in our cause.

    Joan M

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