Just received call from Johns Hopkins

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CRink
CRink Member Posts: 1
edited June 2014 in High Risk for Breast Cancer

Last July I participated in a Breast Study at Johns Hopkins University - they took hundreds of tissue samples from each breast.  I got a call from the Dr. at JH last night explaining that I have Atypical cells in each breast. I'm awaiting a letter from them that will explain more and I have to make an appt with the Breast Cancer Center at JH to discuss my options.  I have a HUGE family history....grandmother, mother and Aunt all had BC - my mom is a survivor.  I'm nervous but also relieved - i feel lucky to have found the study which diagnosed this pre-cancerous condition.  I feel like I have the opportunity to see the future and that I won't have to go thru having BC.  I'm seriously considering a bilateral mastectomy as i've heard about terrible side affects from the drugs they put post menopausal women on.  What have you experienced?  Thanks!

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  • anonymice
    anonymice Member Posts: 532
    edited January 2011

    CR, I can't speak to the side effects of the drugs that you might take.  Your tumor cells, when they would have developed, may or may not be affected by hormones.

    I would just speak right up here and say, if having a bilateral mastectomy is something that you feel you can do and handle the emotional and sexual issues of it, then GO FOR IT.  You know exactly how hard BC is - avoid it, don't join the club!  

    I'm so glad you have the benefit of this testing now! 

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  • SarahsMom
    SarahsMom Member Posts: 1,779
    edited January 2011

    I am so happy that you were part of the study - I am sorry for asking this question, but I wonder why, if the cells were taken in July, that you are just now getting a phone call? I don't know anything about medical studies, so I am sorry if that question sounds naive of me! In any case, it is great that  you know something is "cooking" and can be proactive.  That is a dream for this disease - to be on the offensive, not always the defensive!

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  • HelloFromCT
    HelloFromCT Member Posts: 280
    edited January 2011

    I agree with Pam.  Considering your family history, PBM makes total sense.  I had ADH and family history and had NS PBM with immediate DIEP recon and I am so happy that I did. 

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  • Fighter_34
    Fighter_34 Member Posts: 834
    edited January 2011

    So glad you are given this opportunity to be proactive. Research and research!

    Maybe nipple sparring MX might work, working w/ a holistic doctor might work too, but the bottom line is your are lucky to have so many options.

    Also the BMX isn't that bad and my SEX life is great!

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  • vmudrow
    vmudrow Member Posts: 846
    edited January 2011

    I agree with HelloFromCt - I had ALH and family history and had NS PBM with tissue expanders -I am so pleased with the results.  I was diagnoised last January, oncologist wanted me to take Tamoxifen, I didn't want the side effects so I had surgery in May, the doctors said I didn't need to rush, but not to let it go on too long either.  May I ask your age?  I just turned 50 and was tired of biopsies etc.  Also I think now that you have atypical cells you will need to have MRIs which show everything - but it would need to be biopsied just to be safe.  Good luck.  Let me know if you have any questions - I'm on the picture forum also if you are interested.  Hugs, Valerie

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