ILC not IDC

marie111
marie111 Member Posts: 119
edited June 2014 in ILC (Invasive Lobular Carcinoma)

I was dx on may 07, 2009. After finding a lump in my breast I went to my GP who sent me for a mammogram.  The mammogram was not clear so the b/s did an ultrasound and found a 2cm tumor.  He performed a biopsy and the results came back IDC stage 1, grade 2.  I was then scheduled for a lumpectomy and SNB on May 25th.  Yesterday I saw the b/s for my results and he told me I had ILC stage 1, grade 1 also with extensive LCIS. 

I was wondering if it is common to receive one dx from the biopsy and a different one after the lumpectomy. It concerns me a little because I want to make sure I receive the proper treatment plan for my tumor.

The good news was that the margins were clear, the lymp nodes were negative and there was no signs of lymphatic or vascular involvement. I think this is all good.  Now I must however make the decision about a mastectomy. The b/s seemed to think this was not a huge rush and I had some time to think about it.  I still do not have all the hormore receptors back and I have not yet seen an oncologist. I am feeling a little unnerved about the whole situation even though the b/s did not seem to concerned.

Marie

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  • Kleenex
    Kleenex Member Posts: 764
    edited June 2009

    Hi, Marie - My diagnosis was the same in both the biopsy and the lumpectomy pathology, so I can't address the "change in cancer type" question.

    I will say that for the most part, physicians and patients seem to unfortunately lump ILC and IDC together, as far as planning treatment is concerned. They tend to be concerned about size, lymph node involvement, grade, and hormone receptor and her2neu status.

    Why are you making a decision about a mastectomy? Is someone suggesting one? You had a relatively small tumor (especially for ILC), and the surgeon got clean margins, and you have clear lymph nodes. I'm not sure why you would need to do more surgically at this time.

    You can always decide to have more surgery later, if you find that waiting for scan results drives you crazy with worry. I decided to start small last year, and so far am glad I did. Recovery from the lumpectomy and SNB wasn't too bad, and I was happy to not be dealing with too many issues from surgery (and psychological things related to losing and/or replacing a breast) as I went on to learn more about my type of cancer and began my other treatments.

    Have you had an Oncotype DX test done? It's very helpful in determining if you would benefit from chemotherapy.

    When I was going through my "surgery options" phase of this process, it was very helpful to see multiple doctors. The breast surgeon is a surgeon - they like to remove things to solve the problem, and it's easier to remove all of something than it is to take small bits of it out and keep it looking nice, especially with a cancer like ILC that's hard to feel. Plastic surgeons would rather work with a freshly removed breast, rather than an area that's been radiated. It was my oncologist who really didn't get the point of a lot of surgery for a small tumor, and I am very glad I happened to talk to him as I went through this process.

    Good luck! I'm so glad it appears they got it all out!

    Coleen

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  • trigeek
    trigeek Member Posts: 916
    edited June 2009

    I would send the slides to another lab just to make sure. I personally designed my treatment based on ILC, might have taken a different route if it was IDC. But my stage was 2b.

    Follow your heart you always will make the right decision !

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  • amlg1
    amlg1 Member Posts: 596
    edited June 2009

    I had a 2cm tumor that did not show on mammo but enlarged nodes.MRI biopsey came back ILC and ILCS in breast and nodes.My B/S gave me the 2 options mx or lumpect.I was choosing mx because I just wanted it out,but she did not think I had to be so radical.So I did go for a lumpect. all margins were clean,but I had a lot of node involvement,which is so hard to understand,small tumor but lots of nodes.Any way I am glad I did lumpect.now the treatment will start in July.

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  • hrf
    hrf Member Posts: 3,225
    edited June 2009

    My docs have always told me that results from surgery can be different from biopsy because of the amount of tissue that is examined so yours doesn't sound so unusual. I think you need a lot more information before you make decision re mx or lumpectomy. There's a lot of information on these discussion boards.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited June 2009

    Marie--just wanted to let you know that having  the LCIS  in addition to the ILC does not prevent you from having breast conserving surgery ( lumpectomy), if that is what you want to do. Some good news--my mom had ILC  with negative nodes many years ago--lumpectomy, radiation and tamoxifen--and is now a survivor of over 22 years without a recurrence. Good luck with whatever you choose.

    Anne

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