Writing an article on IBC

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emilyagarber31
emilyagarber31 Member Posts: 3
edited June 2014 in IBC (Inflammatory Breast Cancer)

Hello, everyone. I live in Pensacola, Fla. and am writing a feature article on Inflammatory Breast Cancer.
IBC awareness is my passion because my mother died from it on July 31, 2003, four months before her 50th birthday. I was 17 when she died, and her tragedy shut me down emotionally for a very long time. The anniversary of her birthday is coming up on Nov. 29.
So far, my article is six pages, written in a "Past, Present, Future" view of people in their diagnosis stages.
"Past" is an IBC victim story, "Present" is the story of an IBC survivor, and "Future" is the story of one who has recently been diagnosed with IBC.
I was wondering if anyone would agree to be the "Future" perspective, or who knows anyone who would correspond with me over email and tell me their story so far?
I think education is invaluable when it comes to IBC. Nobody should have to waste precious time with a misdiagnosis just because their doctor does not know about this type of cancer.
My email is emilyagarber31@gmail.com if anyone would like to answer my questions through email. I would greatly appreciate the participation of anyone recently diagnosed who does not mind sharing their story.

Thank you.

Emily

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  • leisaparis
    leisaparis Member Posts: 587
    edited November 2009

    Hello Emily,

    My name is Leisa Paris. I was just reciently diagnosed with IBC. Am going through chemo right now. Would be willing to tell you anything I can, if you think it will help you.

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  • leisaparis
    leisaparis Member Posts: 587
    edited November 2009

    i know under my diagnosis it says IDC, but when the doctor first told me what I had he called it IBC. I asked for my complete diagnosis and they are now calling it. IDC/Inflamitory.

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  • emilyagarber31
    emilyagarber31 Member Posts: 3
    edited November 2009
    Thank you so much for helping. Here are the questions. Since I am writing a feature story, feel free to add as much detail as possible. If you would like, email me your answers at emilyagarber31@gmail.com. I can also email you what I have of the article so far.
    1. Age?
    2. Occupation?
    3. When did you first notice problems and what specific problems were you having?
    4. Did you hesitate at all to see a doctor? If so, what were your reasons?
    5. What medical steps have been taken from the time you first got checked out, until the time you were diagnosed? (please be as detailed as possible, including dates)
    6. What went through your mind after you were diagnosed?
    7. Had you heard about IBC before you were diagnosed?
    8. How did your friends/family react when they heard your diagnosis?
    9. How many treatment steps have you gone through so far?
    10. What type of chemotherapy is it?
    11. How many more treatment steps do anticipate going through?
    12. How has your overall outlook changed since you were diagnosed?
    13. How have your friends/family been supportive?
    14. This past June, scientists from The Cancer Institute at New York University Langone Medical Center identified the gene eIF4G1 as overexposed in the majority of IBC cases, as the gene responsible for the cancerous cell clusters spreading so rapidly in IBC. The discovery is considered a major step that will lead to new approaches, therapies and classes of drugs to target and treat IBC. Did you know about this news? If not, how do you feel about it?

    Thank you,
    Emily Garber

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  • emilyagarber31
    emilyagarber31 Member Posts: 3
    edited November 2009

    Thank you so much for helping.  I will email you my questions.

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  • lorieg
    lorieg Member Posts: 802
    edited November 2009

    Hi Emily.   Iam 33 years old and was diagnosed with IBC in August of this year. Feel free to send me a PM if you have any questions. 

    I am so sorry about your mom.  I have a ten month old daughter and a four year old son.

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  • Chaparrita
    Chaparrita Member Posts: 35
    edited November 2009

    Emily,

    I was diagnosed with IBC which then became Metastatic on 7-21-08.  I have been in total remission for 4 or 5 mos.  No breast removal, no radiation, no lymph node removal only  chemo and Herceptin and remission. I would gladly help you with any info you would like. 

    May God Always wrap his loving arms around you and comfort you. Chaparrita

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