Stress out over Doctor.

Lucybell
Lucybell Member Posts: 20
edited June 2014 in ILC (Invasive Lobular Carcinoma)

Hi Everyone,

This is my first post. I was diagnosied with LCIS and DCIS in both breasts and ILC in the right. I have had a bi-lateral mastectomy and a oopherectomy. I have been on 20mg Tamoxifen for 3 years. Everything is good. Thank goodness. It's my doctor. He did not do a Onco type test. He told me he didn't think I needed it. It seems like everyone I talk to with a similar diagnosis has had that test. Some  even had chemo because of that test. Even though the diagnosis was Insitu.

Anyone not have that test?

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Comments

  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited June 2013

    Hi Lucy, here is some info from the American Cancer Socirty Website about small Stage 1 tumors:



    If the tumor is smaller than 1 cm (about 1/2 inch) across, adjuvant chemo is not usually offered. Some doctors may suggest chemo if a cancer smaller than 1 cm has any unfavorable features (such as being high-grade, hormone receptor–negative, HER2-positive, or having a high score on one of the gene panels like Oncotype Dx). Adjuvant chemo is usually recommended for larger tumors.

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  • Lucybell
    Lucybell Member Posts: 20
    edited June 2013

    Thank you MelissaDall for your response. Sense my doctor didn't do an Oncotype DX do you know of another test that he could have used for him to come to this conclusion.

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  • MelissaDallas
    MelissaDallas Member Posts: 7,268
    edited June 2013

    They are probably going by guidelines that small tumor , lower grade, clear nodes means no chemo so no point in doing the test.

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  • Lucybell
    Lucybell Member Posts: 20
    edited June 2013

    Thank you MelissaDallas for responding to my question. Your answer is sensible. I just don't know why my doctor couldn't say that to me. My biggest concern for myself right now is that I am going to be living the rest of my life paranoid. (If you can call that living).

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  • proudtospin
    proudtospin Member Posts: 5,972
    edited June 2013

    if you are still worried, take your reports and see a second opinion (suggest a dif hospital)

    good luck

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  • Lucybell
    Lucybell Member Posts: 20
    edited June 2013

    Thank you proudtospin. Your response is sensable too. I will do that.

    I am so glad I came to this web site. I just might come out of this fog after all.

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  • wallycat
    wallycat Member Posts: 3,227
    edited June 2013

    Besides the oncotypeDX test, there is a newer test, Mammoprint.

    You are 3 years out now and not sure what the protocol would be on chemo even if you tested such that it would have been indicated.  The odds are in your favor that you are low or intermediate.

    The saying around here is to focus forward and not think back or have regrets.

    If you like and trust your onco, can you ask him what he thinks?  If not, can you get a second opinion for peace of mind?  My score was intermediate and my then (I fired him) onco was *sure* I would score low...so in the end I was still forced to make a decision.

    What age are you? I am curious why you did the oopherectomy (BRCA testing or ??) Without ovaries, you can take aromatase inhibitors, which are supposed to work better for ILC; that may help give you peace of mind.

    Best to you.

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  • Lucybell
    Lucybell Member Posts: 20
    edited July 2013

    Thank you wallycat. (The picture is precious). I kinda trust my onco. I feel he doesn't tell me everything.

    For example. When I go to see him, and after our hello's, he'll say something like "have you been told anything new"?  Or, "What do you know"? Or. "What have they told you"?  What???? He's supposed to be taking care of that for me. I haven't gone to anyone else.  Yet.

    I chose to do the oopherectomy just because I thought it would be a good thing to do at that time. They wanted to remove my uterus because it closed up and they could not get a biopsy. I was just so rattled at the time. I'm not so sure I would choose to do the same  today. Focus forward, right? The plan is, I am to remain on Tamoxifen for 5 years and then switch to a aromatase inhibitor. I've lost 1 aunt on my mom's side to breast cancer at age 40 and another aunt, also on mom side is a survivor with a re-occurance 5 years later. However, she only had a mastectomy and refused all other forms of treatment. She hasn't shared why she made that choice. My mother died from matast cancer. I don't know where her cancer had orginated from. She wouldn't share any information with anyone. I'm not even sure she knew herself. It took her quickly. I was 47 at diagnosis and I'm 50 today.

    Many blessings.

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