many questions

kimberlyribin
kimberlyribin Member Posts: 2
edited March 2018 in ILC (Invasive Lobular Carcinoma)

I am new this this site, and I really need some input. In February I had the lump removed along with 6 lymph nodes. Went in for post surgery check up and was told the tumor was larger than thought from what MRI showed and the was cancer found in one of the nodes. Doctor told me I have two options. Go back in and remove more of the margins and have an MRI every year for the rest of my life, or two, remove the right breast now. I really would like to know if there are others out there facing, or have faced similar situations...

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  • Runrcrb
    Runrcrb Member Posts: 577
    edited March 2018

    Kimberlyribin,

    There is more information you should ask for - onco type testing (I think that’s the right phrase) can tell you about the likelihood of recurrence based on your specific tumor characteristics.

    Quiz your breast surgeon about more lumpectomy vs mastectomy and don’t stop till you understand his or her thoughts. And if dr won’t answer your concerns find a new surgeon.

    Talk to a medical oncologist re chemo or AI treatments

    Talk to a radiation oncologist re radiation.

    Talk to a plastic surgeon about reconstruction options.

    I know it’s a pain to see all these people but you need information before you can make decisions

    I was diagnosed in late June and knew by mid July that i needed a mastectomy. It was another 3 weeks before I’d decided my surgical plan.

    Good luck



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  • Moderators
    Moderators Member Posts: 25,912
    edited March 2018

    Hi kimberly and welcome to Breastcancer.org,

    We're so sorry to hear of your diagnosis, but we're really glad you found us. As you can already see, our Community is an incredible resource full of members always willing to help, offer advice, and support you through your diagnosis and treatment.

    Runrcrb is correct -- you need more information about your diagnosis so you can make decisions along with your treatment team. Can you let us know what type of cancer, stage, grade, etc. you're dealing with? There's some good information on the pathology of your cancer on the main Breastcancer.org site's pages on Your Diagnosis, as well as a page on Questions to Ask Your Doctor About Your Diagnosis that can help!

    Also, as Runrcrb mentioned, there's good information on the Oncotype DX test to determine recurrence risk based on your pathology.

    We look forward to hearing more from you soon!

    --The Mods


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  • Momine
    Momine Member Posts: 7,859
    edited March 2018

    Unfortunately, this is all too common with ILC. They can't image the stuff properly half the time. In my case, I was spared having to make the decision you are facing, because the tumor was too large for a lumpectomy. In your shoes, I would probably just get the breast removed, but I tend to be a bit hardcore that way.

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  • beach2beach
    beach2beach Member Posts: 996
    edited March 2018

    They havent given you all the information? Hormonal status, need for chemo etc. As one of the OP said, OncotypeDX gives some much needed info. I had a 9 mm area, node negative but I chose to have a mastectomy right away, on both. That's my nature to go all the way like that. I just couldnt see putting myself through alternating mri and 6mths later mammo/sono.


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  • gkbuser
    gkbuser Member Posts: 348
    edited March 2018

    Fairly new to the group so I am sorry if I am posting something I shouldn't. I am 1 year out from classic ILC multi focal (10 the largest was 1cm) but all right in the same area. I had lumpectomy with SNB - 2 sentinel nodes removed both negative. Completed radiation now on zoladex and an AI. grade was 1. onc DX was 9. highly ER + , PR+ and HER2 negative. I am treated at a large university cancer center. I was very confident with my choice of treatment at the time, but I have to admit after seeing some of the experiences here I am starting to wonder if I was aggressive enough. My breast surgeon who seemed knowledgeable about lobular. She said that lobular if caught early (and I know that is the caveat here) had as good a prognosis - if not better than IDC. So, what are the facts on early stage ILC compared to early stage IDC? Does anyone know?

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  • Georgia1
    Georgia1 Member Posts: 1,321
    edited March 2018

    Hi GK. While IDC and ILC are different in some ways, there is no difference in mortality rates or recurrence according to my BS, MO, RO and others. So like you I chose lumpectomy + radiation and feel just fine about it after consults with Georgetown, Johns Hopkins and MD Anderson. Happy to chat more if you want to PM me but I think we are basically in the same boat as our ER+ IDC sisters, taking anti-hormone pills and hoping for the best.

    Kimberlyribin, choosing lumpectomy vs masectomy is a very personal choice depending on a number of factors that others have laid out. Please let us know how we can help.

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