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krista87
krista87 Member Posts: 10
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

I was just diagnosed with DCIS breast cancer on May 10th, and had a bilateral mastectomy on May 20th. I'm young and thought I could meet other women who have the same sort of history as me, as well as other women. I have lots of questions still. Thank you!

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  • in_cognito
    in_cognito Member Posts: 429
    edited June 2010

    Hi Krista!  Welcome to the boards.  You will find lots of helpful women here who are very supportive.  Have you heard about Young Survival Coalition?  http://www.youngsurvival.org/

    They have a discussion board there as well. 

    Ask whatever questions you need to - although I do not have the same diagnosis as you, others can help you!

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  • BulldogluvrBeck
    BulldogluvrBeck Member Posts: 41
    edited June 2010

    Hi!

    Wow you moved fast from dx to surgery. Good for you! This is a place to come with questions, concerns, and to let it all out! I had a BMX on March 1. I feel great, no recon, just going breast free as they say. Spend time here and ask any questions, nothing is off limits, you will get answers.

    Hang in there kid!

    Beck 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2010

    Huh? You were diagnosed with DCIS on May 10th, and 10 days later you had both of your breasts removed?? No additional testing? No thinking it over for a while? And in NY you got hospitals and surgeons to move that quickly?  

    You gotta be kidding. What am I missing?

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  • sweatyspice
    sweatyspice Member Posts: 922
    edited June 2010

    Zachsmom, seems to me that Krista knew what she wanted.  If you're sure you want to have a bilateral mastectomy, there's no other presurgical testing necessary (as far as I know).  If you wanted to do a BRCA test, you could always do that later.

    Depending on Krista's recon choices, the timeframe seems quite possible.  I'd only be surprised it happened that quickly if she had an immediate autologous flap recon procedure, those seemed harder to schedule quickly.  But a straight mast or a mast with TE's... those shouldn't be scheduling nightmares.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2010

    She's 23 years old. And she knew she wanted to just lop off both breasts? For DCIS? This is either BS or there's way more to this story.

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  • sweatyspice
    sweatyspice Member Posts: 922
    edited June 2010

    If she's 23 years old she's legally an adult, and she can direct her medical team as she chooses.  You may not agree with her choices, or approve of the parenting you believe she received, or be comfortable with the general trend for young women with DCIS to have bilateral mastectomies - but I'm not prepared to call her out as BSing.  She came here asking for support, and I'm willing to give it to the extent I can.  

    I'm sure there's way more to the story, because there's way more to all our stories. 

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2010

    Is there such a trend?

    And it doesn't matter if I approve or not. What I said is either I think it's untrue, or there's more to it.

    If she came on and said her mother, sisters, aunts, etc. all had BC, that she knew early on if this was the case she would opt for a bi-lat, I'd say....oh, that makes sense.

    But still. She's in LI? And the docs moved so quickly? No scheduling issues? It sure didn't work so quickly with me...... 

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  • Beanius
    Beanius Member Posts: 1,697
    edited June 2010
    krista - Mine is not exactly like yours but I wanted to say hello. There is a web site I've seen posted by another BCO member, www.breastfree.org that may be of interest. Wishing you all the very best!!!
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  • krista87
    krista87 Member Posts: 10
    edited June 2010

    No, this is not a lie. Yes the scheduling went very quickly. Yes I'm BRCA2 positive and so is my uncle, my mom, who also had breast cancer, and my grandmother died from pancreatic cancer. I wish I was making it up but I'm not. Double mastectomy just made sense because I'm so young and with the BRCA2 gene I didn't want to risk anything. Makes no sense to come onto a breast cancer forum and lie...

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  • speech529
    speech529 Member Posts: 337
    edited June 2010

    Krista87

    I wish you all the best in your recovery.  I am sorry you are experiencing this at all, and at such a young age.  I am still in process of treatment, but my decisions about my treatment are very clear to me based on my own health history and my family cancer history.  These types of treatment decisions are never easy.  Be well!

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  • CandDsMom
    CandDsMom Member Posts: 387
    edited June 2010

    Krista-

    Welcome.  So sorry you have reason to be here too.  I was dx 3/31/10 and had BMX with free TRAM reconstruction exactly 2 weeks later - 4/14/10.  So yes, it can happen that quickly, even in major metropolitan areas (I am in Chicago).  And yes, I also chose BMX for DCIS, and I can't speak for Krista but for me it was due to my age (and not as young as her granted), the multifocality (path ended up showing it in 6 separate spots), receptor status, family history (my paternal aunt dx at 28, paternal great aunts dx x 3) as well as my desire to do everything I could to ensure that I would be around for my 2 small children (11 months and 3 years).  It is a big decision, but a personal one, and I don't really think it is for anyone else to question - I certainly don't question other people's decisions that may have been different than mine because, hey, I'm not in their shoes.  I happen to be BRCA negative however my oncologist thinks I probably do have something genetic that is either not commonly tested for/ or we just don't have the genetic locus yet. 

    Anyways, back to Krista, I hope you are doing ok with your recovery, it is a big step, and I have to imagine especially difficult for someone so young as yourself.  You may also want to consider checking out YSC as someone suggested above or contacting Imerman Angels or Your Shoes to see if you can find someone local who has been through your experience.

    take care...

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  • sbmolee
    sbmolee Member Posts: 1,085
    edited June 2010

    Krista - Sorry you are here but glad you are on your way to recovery.  Lots of great information from the ladies on this site.  You did not say whether you are having or considering reconstruction but that is so less important than ridding your body of the cancer!  Best Wishes and ask any questions you have.

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  • krista87
    krista87 Member Posts: 10
    edited June 2010

    Thank you ladies for the support! CandD'sMom, that's crazy that you're BRCA negative, wow. My sisters were tested negative, but of course because of me my mom still wants them tested young. So glad you're all doing well, really encouraging to hear. It's what I need right now! And yes, I'm getting reconstruction. I was very unsure about it at first but I chose it in the end; I don't think I'm strong enough to not have it done. KUDOS to the amazing women who can, for real.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2010

    Got it. That does make total sense. Sorry to have doubted you. I just thought there had to be another part of the story and that is it. Welcome (tho I'm sure this is a place you'd rather not be).

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2010

    krista87- I think it was incredibly brave for you to choose BMX at your age.  Given your family history I think you made the right decision.  Another good decision was coming on here.  I think I have been on every breast cancer site there is and I can tell you this one is the best.  I think every single topic related to BC has been addressed on here at some time or another.  Whatever questions you have I guarantee someone on here will have the answer and you will "meet" some truly amazing women.  And the best part is you can "pay it forward" by helping other "newbies" when you no longer are one! 

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  • CrunchyPoodleMama
    CrunchyPoodleMama Member Posts: 1,220
    edited June 2010

    Hi, Krista - I'm sorry to have to welcome you here, but you're in great company (this is an amazing group of women!). Best wishes to you!

    (P.S. Kate33, your signature is AWESOME!! Cracks me up every time I read it!)

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2010

    CrunchyPoodleMama- Thanks!  I saw it on a t-shirt online at CafePress.com.  I'm going to order it and wear it to my "coming out" party. :)

    I love your screen name.  Cracks ME up every time!  

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  • krista87
    krista87 Member Posts: 10
    edited June 2010

    Kate33 I love your signature too! It's too funny!

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  • lymphtherapist
    lymphtherapist Member Posts: 57
    edited June 2010

    I was dx dcis two weeks ago.  In one week, obtained by BRCA results, MRI of breasts, sterotactic biopsy report, bloodwork and EKG.  I have a priviledged perspective for I am a lymphedema therapist with by speciality is Breast Cancer Rehab.  I initially decided on bilateral mastectomy without reconstruction because I didn't want radiation therapy, node biopsy, multiple surgeries, or tamoxifen.  The side effects of the interventions were not what I was willing to deal with.   After much discussion with oncologist, breast surgeon, and plastic surgeon, I decided on wide excision removal of 5mm dcis in right breast only.  I will take tamoxifen with vigorous monitoring.  If I cannot get clear margins, I will undergo bilateral mastectomies,

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2010

    krista87- Thanks!  

    lymphtherapist- So glad you became a member on here.  You can give a great perspective as an LE therapist.  I think the scariest thing I have learned on here is how much LE is downplayed by our BS when we've only had SNB (mine included).   I am constantly reading posts from women who developed it and were never told of the risks or what precautions to take.   

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  • lymphtherapist
    lymphtherapist Member Posts: 57
    edited June 2010

    don't even want tamoxifen but literature supports its benefit outweighs the side effects.

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  • krista87
    krista87 Member Posts: 10
    edited June 2010

    lymphtherapist - i was told to take tamoxifen as well, i haven't started it yet though. it's mainly as a preventative for ovarian cancer. i don't really want to take it either, but they're giving me no other option. oh well.

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