Bilateral multicentric disease

kristenmesser
kristenmesser Member Posts: 5
edited April 2015 in High Risk for Breast Cancer
Bilateral multicentric disease
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  • kristenmesser
    kristenmesser Member Posts: 5
    edited April 2015


    Hello! Am new to the board and have spent the last 4 weeks in a whirlwind! I am 43 year old, mother of younger kiddos (9,10.13)I found a lump in my right breast on March 7th. Since then I feel like an eternity has passed! I had a mammogram 2 days after finding the lump, only to find out that I also had two masses in the left side as well. Both sides showed calcifications. Following that I had MRI, ultrasound, then biopsies of all three masses. Diagnosed with IDC in right, moderately differentiated. ERPR positive, HER2 neg, KI 88%. Both my sister and mother passed away from breast cancer at young ages(29 and 35), and my brother recently passed away at 42 from lung cancer.

    Awaiting results of genetic testing, but assuming I carry BRCA gene. Opted for bilateral mastectomy which was completed on 3/19. I had one of 6 nodes positive for micro mets. Diagnosis Stage 1B. Waiting for final genetic testing and oncotyping of tumor to determine my next phase of treatment. Chemo is definitely recommended by my treatment team.

    I am hating that I have to go through chemo. The thought of being bald makes me cringe(yes, I guess that makes me extremely vain). AND nausea is one ailment that is VERY difficult for met to undergo. I am dreading the next 6 months.

    It seems that my high KI proliferation, along with the spontaneous development of bilateral disease, and strong family history places me at a high risk. I can not find a lot of data which discusses the nature of bilateral disease. Anyone else out there with a similar story?

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  • Ridley
    Ridley Member Posts: 634
    edited April 2015


    Hey Kristen -- So sorry you find yourself here and your family has had such a rotten time dealing with cancer already.  I had bilat cancer and multi-centric -- multiple areas of IDC and ILC in the left (7 or 11 depending on the pathologist) and dcis in the right.  Had a bilat mast with diep recon (just had the last surgery last week.).  My family is full of cancer as well -- Mom, aunts and both grandmothers had breast cancer, dad had kidney and prostate, grandfather had colon and prostate, and on one side, I've had four first cousins pass away from different types of cancer.  I was tested for the BRCA gene and was negative -- one of my aunts was diagnosed a few months before me and she was also negative, so the thought is that there is likely another gene causing the problems, but its not yet identified. 

    With respect to how I've been treated/staged -- it has been based on the largest area of cancer found on the left side, and I also had oncotype testing to determine whether chemo would be beneficial.  My MO said that my risks because of having multi-centric disease are higher re: recurrence than someone with one area, but not as high as it would be if we assessed risk by adding all of the areas of cancer in my breast together (e.g. my largest area was 1.8 cm, but if you add all the areas together, it would be over 4 cm).  I read a few articles and that seemed to be consistent. 

    On the chemo front, I didn't go through that, but when I thought I would, did a lot of reading, and found that many women said that the nausea should be able to be controlled and if you are having trouble go back to your team and get them to try another med. This is the time to be pushy!  On the hair front, I don't think you are vain at all -- loosing your hair is an external sign that you are sick and one you can't control.  I'm hoping you are able to find a great wig and/or beautiful scarves/hats to help you through -- or if you like -- rock a beautiful bald head -- nothing wrong with that!

    This site has been so helpful for me during the past couple of years -- I hope it is for you as well.

     

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  • Moderators
    Moderators Member Posts: 25,912
    edited April 2015

    Hello Kristenmesser,

    Sorry you had to be here but we're really glad you found the Breastcancer.org Community.

    You've been through so much over the last few weeks and we hope that talking to others here will help you get through the next few months.

    Your fears about the prospect of losing your hair are totally understandable and you'll find many many others here with the same concerns.

    You might like to join the ladies over in the April Chemo: 2015 Thread to share your experience and to learn from others as you receive treatment.

    If you need any help around the boards just let us know and we'll be happy to help

    Gentle hugs,

    The Moderators.

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