DCIS with strong family history

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aces
aces Member Posts: 38
edited June 2014 in DCIS (Ductal Carcinoma In Situ)

I am 35 years old and I was diagnosed with DCIS on Dec. 23.  It is high grade.  Here is the interesting part...my mom is a BC survivor. She had lobuar carcinoma in her 50's.  She had brac testing and it was negative/  My grandmother died of ovarian/BC in her 80's.  Her ovarian cancer was so bad that they did not even treat ther BC so I don't even know what type she had.  Today will be my first visit to the surgeon.  It will be interesting to see what he says.  I am assuming  that am very high risk with my strong family history and my age.  I am going to request a MRI of the other breast before I decide on anything.  I have scheduled an appt with my mom's onc and anther surgeon next week.  I have also called MD anderson to get an appy.  I want to make sure I get several opinions before I decide on a treatment plan.  Any other suggestions...

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  • VinRobMom
    VinRobMom Member Posts: 101
    edited December 2009

    Although I don't have any suggestions since I have no family history and since I don't know how significant it is that your mother was brac negative, I just want to say good for you for seeking out several opinions and for requesting an MRI of the other breast.  This will be so helpful to you in choosing a treatment plan.  Please keep us posted if you can - I'm curious to see what the various docs say.    

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited December 2009

    Is there any history of bc on your father's side? Good you are going for an MRI, that's what I was going to suggest. Hopefully that will help give you more info that you need to make treatment decisions along with your medical team. (I'm assuming that you already have an oncologist-if not, I would encourage you to see one)

    anne

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  • lvtwoqlt
    lvtwoqlt Member Posts: 6,162
    edited December 2009

    Aces, I too had a strong family history, my aunt had ovarian cancer at age 37 (didn't find out what cancer she had until after she died) and my mother had lobular in her 60's. She too tested negative for the BRCA genes. I started having problems in my mid 40's with microcalcifications in both breasts which were tested for ADH (pre-cancer). I opted for bilat after dx with DCIS in 2007 because of the family history and my personal history of precancer two times in 18 months.  It appears that you have your bases covered by scheduling appointments with an oncologist, a second surgeon and getting an MRI to help you in your decision making.

    Sheila

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  • sweatyspice
    sweatyspice Member Posts: 922
    edited December 2009

    In addition to the BRCA test, there's a test called, I think, BART - same company, tests for other genes - I don't really know all the details but the BART is sometimes recommended for women in a situation like yours.  They know BRCA isn't the whole picture, and neither is BART for that matter. 

    Know that usually you need to see a genetic counselor and/or an MD with a genetics specialty for the test; and it takes 2-3 weeks to get the results back.

    If you want to do genetic testing, schedule it early in the process.  When I realized I wanted those answers it took forever (2 weeks for the app't w/geneticist who only saw patients on Mondays, 3 weeks for the results b/c insurance nonsense held things up for a week). 

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  • TNLady
    TNLady Member Posts: 233
    edited December 2009

    aces,  I was diagnosed with DCIS in Nov. 09.  I too have a family history of BC.  I was given the option of lumpectomy with radiation or a nipple sparing mastectomy.  My doctor encouraged me to have the lumpectomy, but I was more comfortable doing the mastectomy with my family history.  I had a nipple sparing bilateral mastectomy with immediate reconstruction on December 15th.  My PS was able to go ahead and put the implants in at the same time, which meant one less surgery for me.  Usually, they have to have use tissue expanders until the muscle and skin can be stretched enough for the implant.   I know this will be a big decision for you and you are doing the right thing by looking at all your options.  I started a thread on the nipple sparing procedure if you want to check it out, it is under breast reconstruction.  So far, I am very happy with my decision.  I wish you the best of luck and if you have any questions, please feel free to ask.

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  • aces
    aces Member Posts: 38
    edited January 2010

    After visits with two surgeons, an oncologists, and one plastic surgeon I have decided on a BMX with tissue expanders.  The DCIS is very close to the chest wall and I have small breast.  Everyone says it won't leave much behine and the best cosmetic results would be to do a mast.  For peace of mind and cosmetic results I am going to go ahead and do a BMX.  The onc says if all of the pathology comes back okay then I will not have to do tamoxofin.  I feel better now that I have decided on my treatment.  I will feel even better when we set a date.  I am waiting on the PS and the surgeon to get a date.  My only other concern is the whatif factor.  What if they find an invasive component when they do the final biopsy......

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  • sunnyhou
    sunnyhou Member Posts: 169
    edited January 2010

    I was where you were.. the what if's. I obsessed about the possibility of an invasive component.. This is what I know.. The likelihood is low.. very low.. and even if you did it would prob be so small you prob would be treated like you just had pure DCIS. In the end, all those nights I spent on the computer away from my family obsessing, none of it came true.. I just had DCIS and it was smaller than they mammo and mri thought.. so.. I will quote my sister..

    "do not borrow trouble"

    if you waste all this time worrying and none of it comes true.. it is just time wasted..

    wishing you luck.. ask away if you need mental or emotional support.. we are here for you!!!

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  • aces
    aces Member Posts: 38
    edited January 2010

    thank you!!!!  I needed that!

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  • themorsefamily
    themorsefamily Member Posts: 4
    edited January 2010

    hi, i had dcis, which was removed with biopsy, followed by lumpectomey last week.  pathology came back, margins are clear. It was stage 0, grade 1-2.  My question is, when i went for follow up with surgeon, she highly recommended getting the BRAC test done before I met with radiologist for radiation.  I can't seem to get a feeling of if this is something everyone does or not.  it seems that a lot of people choose not to have this testing done.?

    thanks for any response!

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  • bonnie1jean
    bonnie1jean Member Posts: 40
    edited January 2010

    Hi:

    I had a wide excision in December which showed DCIS and LCIS and my BS had me do the BRAC1 and BRAC2 tests due to strong family history (mom had breast cancer premenopause and her sister died of ovarian cancer at 64, her father died of colon cancer at 59 and one of my brothers had surgery for prostate cancer five years ago).  Miraculously my results were negative.  My BS said she wanted me to do the tests because if they came back positive she would recommend that I have my ovaries removed.

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  • lisamcknito
    lisamcknito Member Posts: 9
    edited January 2010

    I have DCIS, my first lump the margins were not cleared.  I am awaiting a 2nd surg this Thurs. I don't know what I will do if it doen't work out this time.  Awaiting and afraid...

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