Here is the real DX!

Cammychris
Cammychris Member Posts: 99
edited June 2014 in Just Diagnosed

yesterday I received a phone call from a "doctor" that told me I had intraductal in situ. To my surprise I met with a surgeon today who said that although I did have mostly DCIS I also have 7mm invasive duct carcinoma. She reassured me that it was a good prognosis but told me that a lumpectomy was not a option due to microcalcification being on a large area she also said that the IDC was so close to the surface it very easily could have been mistaken for cyst. She felt hard my armpits and said that she did not feel anything. She suggested due to my age and with genetic testing positive that bilateral mastectomy would be recommended. She said this is a long road but it's a good prognosis she was not sure if chemo is going to be recommended but again will see. Does this make sense to anyone and is it crazy to have 2 different types the DCIS is majority of it scattered.?

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  • Infobabe
    Infobabe Member Posts: 1,083
    edited April 2014

    Cammy, it is common to have two types of cancer and DCIS is often associated with invasive.  The DCIS you can disregard as the invasive will take preeminence over the DCIS as far as treatment is concerned.

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  • lintrollerderby
    lintrollerderby Member Posts: 483
    edited April 2014

    Cammy, I'm sorry that you're here with more than DCIS. I was also diagnosed at age 34 (in 2011) and I am positive for a BRCA1 mutation as well. Are you also a BRCA mutation carrier? I assume so by the wording of your post. Do you know the hormone receptor and Her2 status of the invasive component yet? The overwhelming majority of invasive cancers in BRCA1 mutation carriers are Triple Negative. If your tumor is Triple Negative, I suspect your medical oncologist will recommend chemo. If you are positive for a BRCA mutation, then bilateral mastectomy is certainly an option that you should strongly consider, as well as bilateral salpingo-oophorectomy (current recommendations for BRCA1 women is removal by age 35). 

    As for your questions, yes, it all makes a lot of sense. It's also very common to have more than one type of cancer. You have IDC and DCIS, not two types of DCIS. The IDC trumps the DCIS, so all treatment recommendations and staging will be as a result of the IDC that is present. 

    I've been where you are and I know the level of shock you're experiencing. I understand the feeling of being 34 and being blind-sided by this beast. Do you have any questions that you'd like to ask? 

    Best wishes. 

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  • Cammychris
    Cammychris Member Posts: 99
    edited April 2014

    I have not been tested for the BCRA but am doing that. The HER2 test came back pending? She said it need further testing. I honestly feel like I got sucker punched. The IDC was 7mm in size and my surgeon told me that the way it looked most people would have past it of as something that was not this serious. The doctor prescribed me medication for my nerves thank god! I have found that this group has giving me such strength to hear these stories and to see the positive vibes. I believe you all are angels! My life has changed. I was told by my doctor to "have faith not fear" I keep playing it over and over in my head. So what if HER2 is negative what will that mean. Thank you again 

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  • lintrollerderby
    lintrollerderby Member Posts: 483
    edited April 2014

    Wait, I'm confused. You said: "She suggested due to my age and with genetic testing positive" I took that to mean that you had tested positive for a mutation. If you haven't had testing yet, then disregard all the info about BRCA until/unless you have a positive, confirmed mutation. As for the Her2, it could mean that it's equivocal on one test (IHC or immunohistochemistry) and has to be tested again by FISH (florescence in situ hybridization) to know for sure whether Her2 levels are amplified. Have you been told about estrogen receptor or progesterone receptor presence or absence in your biopsy? To answer your question, if Her2 is negative, it would mean that you would not be a candidate for a drug called Herceptin. Do you have a copy of your pathology report? Without having info from the pathology report, it's a little more difficult for us to give you specific answers because there are quite a few variables that need to be taken into account. 

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  • Kicks
    Kicks Member Posts: 4,131
    edited April 2014

    I know were little about IDC and DCIS other than  what little I've seen many women write here (I'm IBC) but it does seem that it is not unual for both to be present.

    Have you had genetic testing done yet or  not?  The results can make a difference in the TX plan.

    Was anything said about how extensive/spread it is?  Was neoadjuvant chemo mentioned?  While it is SOP for some typesof  BC, it is becoming more common with others to shrink the area.  Have you seen the chemo or rad Drs yet for their input?  TX plans are not just surgery.

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  • Cammychris
    Cammychris Member Posts: 99
    edited April 2014

    Not she said I have to get genetic testing .  I also know that the HER2 test is being tested by FISH at this time the it is ER+pr-?  The microcalcifactions are scattered through out the right breast (dcis) and rated a grade 3.  The IDC was very small(as told to me) 7mm.  She said that taking my age that bilateral would be the best option even if genetic test was negative.  This all began on 4/4/14 I feel like it is taking forever, I just received phone call to meet with plastic surgeon on Wednesday then I should have a surgery date no more then two weeks after that at most.  Is this all safe or should it be faster I thought it was going kinda slow but I have no clue.

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  • lintrollerderby
    lintrollerderby Member Posts: 483
    edited April 2014

    I don't quite understand your question: "I also know that the HER2 test is being tested by FISH at this time the it is ER+pr-?" 

    Have you been told what your ER and PR status is?

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