Just found out I have ILC

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Deamo1
Deamo1 Member Posts: 193
edited June 2018 in Just Diagnosed

Hello, I just found out I have ILC. You'll have to excuse me for not knowing terms and meanings. I'm still in a fog. It's grade 2, stage 2. HER2 is negative, ER 93, PR 98, Ki67 34, 4cm on right breast and many small tumors on left. They want to do a double mastectomy in 1.5 weeks. They did an ultrasound of lymph nodes and only see 1 that is "thickened/suspicious" They tried to do a biopsy on it and missed because it was too deep. Anyways, that's all the info I have so far. So far they said I need a mastectomy and hormone therapy for sure. Chemo/radiation depends on the final biopsy. I'm frightened. Any advice or words of hope needed. Thank you

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  • Meow13
    Meow13 Member Posts: 4,859
    edited June 2018

    well, one ray of sunshine you are both er and pr positive. Hormone therapy should work for you. My oncologist doesn't consider ki-67 but others still do. Good luck to you.

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  • Deamo1
    Deamo1 Member Posts: 193
    edited June 2018

    I think so too. I have told my Dr's for years that my hormones are not right. No one would listen to me even after I went to an outside lab for testing. Thank you for your response.

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  • beach2beach
    beach2beach Member Posts: 996
    edited June 2018

    Sorry you joined the club but welcome. Great that it is HER2-, and being ER/PR like Meow said, gives you the recommendation to use hormonal therapy. I can't comment on the KI67, my dr's did not do that one. I had the OncotypeDx after surgery. Not sure if the KI67 is done routinely or specifically asked for. Your Dr. may do the OncotypeDX also. I'd ask. That's what I waited for to see if chemo was a benefit or not. My nodes were clean.

    It is a whirlwind when it happens so fast but you are one the path and getting it done. I found out myself last 7/29 and had surgery by 8/7...Think I'm still in the fog almost a year later. You will get through this. Personally, the mastectomy wasn't bad for me. I was out next day and moving around and stretching my arms. I wish for you the same and hope the node turns out negative. Please keep us posted


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  • Meow13
    Meow13 Member Posts: 4,859
    edited June 2018

    Mastectomy and the thought of it made me physically sick. It was a horrific multilation to me. But I wish I knew how good plastic surgery could be. I suffered so much not knowing I could look good again. There are many here that can look past losing all your hair, suffering permanent side effects from chemo, loss of nails, teeth and losing your breasts. But, most can be dealt with. Side effects can be mitigated, cold caps to save hair, plastic surgery to restore breasts. Most severe side effects are rare.

    There are people rallying others to go bald, go flat. It is psychological, some fight back like a badge of honor. It gives them strength I wish I had, everyone should do what they need. But for me, I don't want any physical reminders. I am happy with what I have received it was enough to make me feel good again.

    Seven years ago I was in the worse place ever. If only I could have looked ahead and seen it would be ok.

    It is going to be ok, you are freightened but your prognosis is good. There is no reason to believe it will come back. You do what you can. Good luck.

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  • Deamo1
    Deamo1 Member Posts: 193
    edited June 2018

    Thank you for your kind words Beach2beach, it means a lot to me. I will definitely ask about the OncotypeDX test. Good news about your recovery time. My surgeon said the same. She mentioned sending me home the next day with Tylenol. Is that true?

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  • Meow13
    Meow13 Member Posts: 4,859
    edited June 2018

    Yes, all my pain was emotional. The physical pain I had was managed with extra strength tylenol and advil.

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  • Deamo1
    Deamo1 Member Posts: 193
    edited June 2018

    Thank you Meow13. I'm ok with this. I've got it--I hope! Wow about the Tylenol!

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  • Icietla
    Icietla Member Posts: 1,265
    edited June 2018

    Welcome, Deamo1.  I am so sorry about your diagnosis.  It is always a terrible shock.

    Have you a responsible adult caregiver to assist you and watch out for you through the first several days and nights after you have left the Hospital?

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  • Icietla
    Icietla Member Posts: 1,265
    edited June 2018

    It takes several weeks for these free lymphedema risk alert bands to arrive by mail__

    http://lymphedema.com/alertband.htm

    Here is an article with links to information about reducing your lymphedema risk __

    http://www.breastcancer.org/treatment/lymphedema/reduce_risk

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  • beach2beach
    beach2beach Member Posts: 996
    edited June 2018

    Yup, Tylenol. No pain killers given in hospital. My Bs and Ps said they don't like to give it. So it was Ketorolac IV (heavy duty tylenlol according to nurse) and sent home with some in pill form. Never took one once I was out of hospital and I was comfortable enough in the hospital so I guess it did the trick.

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  • Deamo1
    Deamo1 Member Posts: 193
    edited June 2018

    That is really awesome Beach2beach. Thank you for this info. God bless!

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  • Lula73
    Lula73 Member Posts: 1,824
    edited June 2018

    so sorry you’re joining our club, but welcome! There is a lot of support here. Ditto to what the ladies before me have said about hormone status, etc. one of the things about cancer that you’ll learn is that you’ve always got to be looking 2-3 steps ahead. This includes surgery. No one has asked, so i will. You mentioned mastectomy(mx), but not reconstruction? Do you plan to have reconstruction? If so, have you investigated all your options including natural tissue recon (which is one of the ones that can be done at time of mx)?

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  • Deamo1
    Deamo1 Member Posts: 193
    edited June 2018

    @Lula73 No, I don't want reconstrution. I will do just fine with mastectomy bras.

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