Terry Arnold: Why I Joined a Registry Study

December 9, 2014 at 4:41 am 5 comments

terry.arnoldTerry Arnold is participating in the Inflammatory Breast Cancer Registry at the M. D. Anderson Cancer Center, in Houston. This registry is collecting blood and tissue samples and treatment information from patients with inflammatory breast cancer (IBC). The samples are banked at the
M. D. Anderson Cancer Center for use in future research studies. BCT spoke with Arnold about her experience.

Q: When were you diagnosed with IBC?
A: I was diagnosed in the summer of 2007, at age 49. My breast became red and swollen and puffed up. My doctor thought I had an infection and put me on antibiotics. I was misdiagnosed five times over a period of four months. I live in Houston and ultimately I ended up at M. D. Anderson, where I was diagnosed with triple negative IBC in that breast and a triple negative tumor in the other breast.

Q: How did you learn about the IBC registry?
A: The researchers told me about the registry and I enrolled because I wanted to do anything I could to help researchers learn more about IBC. I had no history of breast cancer in my family, I had breastfed five children and I was not overweight. That was something I had hoped would reduce my risk of breast cancer. I was careful about my weight because we have a history of diabetes in my family. I didn’t think breast cancer was in my future and I wanted my doctors to figure out why this had happened to me so it would not happen to anyone else.

Q: What was involved?
A: The registry requires a blood sample, so they did double withdrawals of blood. It was no big deal. Then I completed a lot of surveys that asked about alcohol, food, where I lived, my lifestyle—all kinds of questions. There was never any pressure. They were almost apologetic about how many questions there were.

Q: Have you encouraged other women to get involved in clinical trials?
A:  All the time. Women often put their families first and worry about extra time or travel required for a trial, but they need to put themselves at the head of the line. Some of us are standing on the shoulders of giants, of others who took part in trials that helped us, and taking part is a way we can pay it forward.

Entry filed under: Breast Cancer Treatment, Personal Stories, Vaccines. Tags: , , , .

New Breast Cancer Trials for Week of 7/14/14 and 7/21/14 Q&A With Dr. Stanley Rockson, Founder of the National Breast Cancer Lymphedema Registry

5 Comments Add your own

  • 1. terrylynnarnold  |  December 17, 2014 at 6:47 pm

    Thank you for sharing a bit of my story. My hope is that more women will get involve and that sooner rather than later, we can stop cancer forever.

    Hope always,

    Terry Lynn Arnold

  • 2. breastcancertrials  |  December 17, 2014 at 7:30 pm

    Terry: Thank you so much for sharing your story with us and all of our readers. It’s so important and helpful.

  • 3. Jennifer Womack  |  January 30, 2018 at 10:50 am

    How can a women get expedited treatment without coverage.

    • 4. Jennifer Womack  |  January 30, 2018 at 10:56 am

      I wish you a speedy recovery and think you are a very special person. This message was not sent at 10: 50 am. When you can send info for getting in the trial and what is required to participate. How often a week etc…

  • 5. breastcancertrials  |  January 31, 2018 at 6:35 pm

    Hi Jennifer: Here is a link to the Inflammatory Breast Cancer Registry trial on BreastCancerTrials.org: http://bit.ly/2DOVE7G
    Also, here is some information about financial assistance for breast cancer treatment: https://ww5.komen.org/BreastCancer/FinancialResources.html
    Please feel free to call us to talk further about any of this information: 415-476-5777


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