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cathyhh
cathyhh Member Posts: 1
edited March 2014 in Breast Cancer #1
I was diagnosed with DCIS on December 22 after a core needle biopsy. I had an excisional biopsy in January but the margins weren't clear and pathology indicated a grade III so I had a mastectomy 3 weeks ago.

The delay was because I got additional opinions before going for the mastectetomy. Some people were very dismissive - saying DCIS is not really even cancer yet.

Well, the pathology from the mastectomy came back and there was another focus of invasive. My surgeon did not take out any lymph nodes at the time of surgery because then they thought is was only DCIS. I also got a tissue expander put in place at the time, too. My surgeon says it is now too complicated to do a sentinal node biopsy. My arm went numb after the surgery - I could barely move it to eat or brush my teeth. It has gotten much better now but still remains weak.

They are saying now that it will make my arm worse to go after the lymph node not to mention the tissue expander is already in place. My oncologist sent my results off to California for an oncotype test to determine if I should have chemo. Seems like they should be looking at the lymph nodes - they all are waiting for the results of this test which I won't know for 2 more weeks. It looks like it is really about statistics and not finding out whether or not the cancer has spread. No other tests have been suggested. I am 37 years old and have 2 children. I am also the main income of my family and need to keep working to provide the financial support.

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  • SusanAnne
    SusanAnne Member Posts: 245
    #2
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    Hi there. I'm sorry for your diagnosis and the way you've been treated. Don't you just love these doctors who think they know it all before they even open you up! When my cousin decided to do prophylactic mastectomies (LCIS) I thought it was a little overboard that they also did sentinal node biopsies. I now see the method to their madness. Lucky for her things turned out fine, but it could have gone the other way just as easily.

    Sounds to me like it's time for more opinions. You are obviously not comfortable with the status quo and rightly so. You deserve answers. I think you are going to have to go elsewhere to find them. Remember that the doctors are working for you. If you are not satisfied with their explanations, fire them! Find a compassionate doctor who won't mind working thru the complications to do what needs to be done.

    I hope you have a supportive family and friends around you to help relieve some of your other burdens during this time. Take advantage of all the help offered. Call your local breast coalition and let them help as well. You can't have the weight of the world on your shoulders as you go thru all of this. I wish you well. You will certainly have all of our support here on the board.

    Take care,
    Susan
  • Roxi1
    Roxi1 Member Posts: 39
    #3
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    SusanAnne said:

    Hi there. I'm sorry for your diagnosis and the way you've been treated. Don't you just love these doctors who think they know it all before they even open you up! When my cousin decided to do prophylactic mastectomies (LCIS) I thought it was a little overboard that they also did sentinal node biopsies. I now see the method to their madness. Lucky for her things turned out fine, but it could have gone the other way just as easily.

    Sounds to me like it's time for more opinions. You are obviously not comfortable with the status quo and rightly so. You deserve answers. I think you are going to have to go elsewhere to find them. Remember that the doctors are working for you. If you are not satisfied with their explanations, fire them! Find a compassionate doctor who won't mind working thru the complications to do what needs to be done.

    I hope you have a supportive family and friends around you to help relieve some of your other burdens during this time. Take advantage of all the help offered. Call your local breast coalition and let them help as well. You can't have the weight of the world on your shoulders as you go thru all of this. I wish you well. You will certainly have all of our support here on the board.

    Take care,
    Susan

    Gosh, it sure gets confusing doesn't it. Both the blue dye and the radioactive tracer are injected into and around the tumor bed. In your case, you now have the expander which prevents this from occurring.
    Whether the tumor is in the lymph node or not, affects treatment, not survival. The oncotype test will also inform you about treatment.
    I don't know how much having a complete axillary node dissection (which would be your only option for the nodal status) would benefit you (and there are many risks associated with this also).
    IMHO, I feel oncotype tests once fully accepted by insurance companies will negate the reason for node surgery to determine treatment/prognosis.
    I am sorry you went through so much; sure doesn't sound like very much fun. How is your arm now doing? Do you have complete ROM again?
    Let us know what happens. Much love and hugs.
    Roxanne

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