Mixed messages-diagnosed yesterday

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DCIS stage 0, (nuclear grade 3) in left breast. I will have MRI of left breast next week and had the genetic testing done today. (1) why didn't the dr give me script for MRI in right breast too. (2) if i have dcis stage 0, why do I have to worry about whether it is invasive and spread. (3) I feel like the dr is giving me mixed messages and if we are concerned why should I wait a month for surgery. Why not get mastectomy now and then coordinate with reconstructive surgeon. (4) how do I know I will be able to live a long life after this?

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  • Jodycat
    Jodycat Member Posts: 123
    edited February 2012

    Others may correct, and I hope they will if I am wrong. Most of us, whatever stage we are assigned to, live with the possibility of reoccurence in one way or another. My understanding is that dcis stage zero is an exception and can really be made to go away forever. If that's so, then the additional tests are to make sure you are indeed stage zero.

  • lisagwa
    lisagwa Member Posts: 232
    edited February 2012

    Thanks. I am scared because this is a whole other world of uncertainty.

  • cinnamonsmiles
    cinnamonsmiles Member Posts: 779
    edited February 2012

    Only your dr. can answer as to why he didn't schedule an MRI of the other breast.Pure DCIS only occurs within the milk ducts. It can escape into the surrounding breast tissue. No one can predict when or if it will. Your grade three means that  your cancer cells are the furthest away from a normal cell, as opposed to grade one. That also means it's more aggressive than grade one and possibly more likely to invade other tisses than grade one.

    If you don't want to wait, then don't. Your surgeon works for you. If you are ready to do the surgeries, then tell your surgeon you don't want to wait.

    DCIS is a very good prognosis for no evidence of disease. My surgeon told me not to worry, that I will not die from it (I was grade one, though).

    No one is guaranteed to live a long life, cancer or no cancer. But having DCIS,  you have a very good prognosis not to die of cancer.

    There is a lady named Beesie on here. Look up her past posts on DCIS. You will find a lot of good information from her.

  • lisagwa
    lisagwa Member Posts: 232
    edited February 2012

    Thanks. I am new to this and have not figured out how to navigate through this forum. How do I find Beesie's posts?

  • Kadia
    Kadia Member Posts: 314
    edited February 2012

    Go to "Search" in the upper right corner, then search by Member Name.

  • SelenaWolf
    SelenaWolf Member Posts: 1,724
    edited March 2012
    DCIS is non-invasive cancer, which has the potential to become invasive.  Nobody can predict when it will happen or to whom.  Some DCIS never becomes invasive, just continues to bumble along and do nothing.

    As a result, women deal with it very differently; some women don't like the idea of a "ticking time bomb" in their body and opt to have mastectomies rather than take the risk that it may become invasive.  Other women are comfortable with regular screening and a "wait-and-see" attitude.  It's a deeply personal choice.

    If you have DCIS, then it's not invasive at this point in time.  Waiting a month for surgery should not put you in danger, but - if you are concerned - push your doctor for answers.
  • Dianarose
    Dianarose Member Posts: 2,407
    edited March 2012

    When I went for my MRI it said on the paper work that it was for the right breast but they always do both.

  • Wren44
    Wren44 Member Posts: 8,585
    edited March 2012

    Considering how the MRI is done (with boobs hanging down) it probably isn't possible to just do an MRI of one breast. Mine said for left breast but the report covered both. Best wishes for good reports on all tests.

  • TheLadyGrey
    TheLadyGrey Member Posts: 231
    edited March 2012

    I suggest you start a thread in the DCIS forum -- scroll down the Forum Index page or cut and paste this link:  http://community.breastcancer.org/forum/68.  Beesie has several posts there.  I need to bookmark them so I can find them more easily next time.  

    I don't want to panic you but the biopsy diagnosis may turn out to be incorrect or incomplete which is another reason to do the surgery -- you must have good information to make good decisions.  

    I was told I had DCIS but after the mastectormy the pathology report was .6 mm invasive which calls for a very different treatment protocol than pure DCIS.  

    I would insist on an MRI for both breasts -- what possible difference can it make?  There is another poster here named BlairK whose wife was in a similar situation.  They argued for an MRI for both breasts and the results led to a bi-lateral mastectomy.   

    It is SO hard when you are so shell shocked and ignorant to stand up for yourself but you have to do it.  Come here and post often -- I cannot imagine how I would have gotten through this without this group.   

  • lisagwa
    lisagwa Member Posts: 232
    edited March 2012

    Thank you for all your input. I truly appreciate it. I read the MRI script incorrectly. After posting here, I called the doctor's office and it was explained that I would be getting a bilateral MRI. The results in the DCIS breast showed more of the same calcifications. My other breast didn't show anything suspicious. I am still making decisions - mastectomy vs double mastectomy and reconstructive decisions. In the interim I have had 2nd consults.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited March 2012

    Good to look at all the options. I had two biopsies that only showed lcis tissue or nothing. The mri showed some additional calcifications, and the third biopsy finally found the invasive component.

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