We May Be Numbers, But We’re Also So Much More

Hello Mermaids! It’s been a while since I’ve written a post, but it’s been a busy time for me. I have been doing interviews with different media outlets about my blog and living with metastatic breast cancer. You can read some of these interviews in the section of my blog,  ‘Featured In’. There will be more posted by the end of this month!

One of the main reasons I chose to blog about Metastatic Breast Cancer was to educate and give hope to others with MBC. Therefore, I also believe it is my responsibility to educate myself on the latest in the field of metastic breast cancer. Dana Farber Cancer Institute, where I am treated, hosts an annual Metastatic Breast Cancer in conjunction with EMBRACE.

EMBRACE (ending metastatic breast cancer for everyone), is a clinical program launched in August 2016. Doctors and researches collaborate to better understand MBC, “with the hope of improving treatment options now and in the future.” Over the years, I have donated blood work and tissue samples from previous biopsies; all with the hope of improving treatments. 

This year I was asked to speak on the patient panel of the forum with three other women with MBC. In this post I would like to share with you some of what Mark, Michaela, and I absorbed during the day. 

Dr. Eric  Winer, (Director, Breast Oncology Center, Susan F. Smith Center for Women’s Cancers), began the day with opening remarks. He spoke to both the hope and the reality myself and others with MBC face. The hope: There has been more progress in the last five years in the field of MBC than the previous 20 years; doctors and researchers are moving closer to the day where  stage IV breast cancer is treated like a chronic illness, like diabetes or high blood pressure. The reality: We aren’t there yet and we might not reach the ultimate goal in our lifetimes. The quality of life we have on treatments and the efficacy of treatments still have a long way to go.

Dr. Winer also talked about how those of us with MBC have a unique emotional side to the illness. We have family and friends who want to talk about our disease and others who don’t. We all want to live our lives as much as we lived them before our disease. We are numbers and statistics, but we are also so much more. We talked a lot about what it’s like living with MBC on the patient panel. I talked about how metastatic breast cancer does not define my life; I talked about how I cope with living with MBC; I talked about how I don’t worry about things I can’t change or control. The other women and myself echoed one another’s thoughts; the common theme: we do not let MBC define us. It was so great to speak to so many inspiring women!

Dr. Erica Mayer, my oncologist, spoke about new research and treatments in Estrogen Receptor Positive MBC. (I am ER+, there is also HER2+ MBC, and Triple Negative MBC). It was uplifting to see how far we have gone in the “toolkit” of treatments. It was disheartening to see how many treatments in the toolkit I’ve had already gone through; I mentally checked off quite a few on the list. At the same time it was uplifting to see how far research has come. Many of the treatments that gave me extra months have only been approved in the last three years. It’s because of the women with MBC who came before me and others with MBC that we have reached the point we are at in treatments for MBC.

Now, it’s time to take another peek into the toolkit for another new treatment. I met with Dr. Mayer two weeks ago to discuss recent scan results. My bones and lungs look great, but my brain has a new spot, and lesions on my liver continue to grow.  Because of these results I need to stop the chemotherapy I have been on for the last eight months. Eight months was a very long stretch on any treatment for me and I’m glad it worked for as long as it did! The treatment I recently started is a hormone therapy, rather than a chemo, and consists of two pills daily. My toolkit of treatments is running low and I hope this new treatment will work in stopping progression. Soon, I will need to look into clinical trials once my options of hormone therapy and chemotherapy run out. (For MBC, the hope is for hormone therapy to work, chemo is an option for when hormone therapy doesn’t work or more aggressive measurures need to be taken, and clinical trials come into play when those other treatments types run out.)

Lastly, here is a link to an interview I recently did with Reader’s Digest about living with Metastatic Breast Cancer. This is very special to me because I got to be a mermaid and worked with such wonderful people in putting this article together.

LINK: https://www.rd.com/health/conditions/breast-cancer-mermaid/

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8 thoughts on “We May Be Numbers, But We’re Also So Much More

  1. I read the RD article. Your willingness to share your story has helped so many. Your courage, strength and beauty (both inside and out) are an inspiration. Loved the mermaid pics – those were absolutely stunning!

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  2. We may have met previously at Temple Etz Chaim. We have mutual friends. I too have a daughter at GW. I am also a breast cancer patient, I see Dr. Winer at DFCI. I’m very inspired by your work and enjoy reading your blog. I hope the hormone therapy works for you. Thank you for all you do for MBC. I’m early stage but do have IDC so well aware MBC patients need more options. Be as well as you can!

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  3. Hi Susan,
    You are doing such important work educating others about metastatic breast cancer by sharing what it’s like for you and your family to deal with it. I’m sorry you had to switch things up recently, but so glad there’s still a thing or two in that toolbox. Hoping the new hormone treatment goes well and keeps things stable. And you’re right, of course, we all are so much more than just numbers. Your photo shoot must have been quite the experience. Amazing photos!

    Liked by 1 person

    • Thank you, Nancy. I feel it is my purpose to educate and give hope to others. The items in the toolbox are running low, but I try not think about it all the time, and have hope new treatments are around the corner. The Mermaid photo shoot was a blast, thanks.

      Liked by 1 person

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