Invasive lobular carcinoma

4646464646
4646464646 Member Posts: 1
edited June 2014 in ILC (Invasive Lobular Carcinoma)

I was diagnosed with a 7cm mass in my right breast 12-31-12 They believe 2 to 3 lymphnodes are positive.

I already had my chemo and I will have an mastectomy in one month. My surgeon and

2nd opinion surgeon said I must have all my lymphnodes removed. I am stage 3A. Has anyone had fewer removed with late stage ILC ? They are also talking about radiation. I am terribly worried about contracting lymphedema. (they also discovered some very very small lesions on

the lung and liver, which doc say are too little to be of concern right now. Thank you.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited July 2013

    Hi 46....,

    When you say "all your lymph nodes " do you mean every last one on that side or just the ones involved?  Your risk is pretty low with just a few. I had 11 removed, and so far so good as I shared your same fears.

    I'm sorry about your dx; it just sucks, doesn't it? Hopefully others will weigh in on this topic, too.

    Hugs

    Claire

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  • Momine
    Momine Member Posts: 7,859
    edited July 2013

    Hi there and sorry you have to deal with this stuff.

    As for lymphedema, I had axillary clearance on the right, as well as post-surgical chemo and radiation (both of which can trigger lymphedema).

    The doctors tend to be quite unconcerned about lymphedema issues. Because a friend had warned me, I was very aware and very insistent on getting some help BEFORE a serious problem developed. I believe this saved me. I am 2 years out and I have no visible swelling and only rarely a minor problem with the arm.

    So, I would urge you to get a referral to a PT who specializes in lymphedema and breast cancer patients shortly after your surgery or even before (for baseline measurements and post-surgical instructions). I started seeing my PT about a month after surgery, and I saw her regularly for massage during radiation and several months beyond. I also wore a sleeve and gauntlet all through rads and the summer following. Now I only wear it when I work out or do other heavy stuff with the arm.

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  • Racy
    Racy Member Posts: 2,651
    edited July 2013

    Hi, I had 22 nodes removed and have very mild truncal lymphedema. There are research articles on this site about node removal. One was very recent.  Look at those articles and make sure you are getting the current standard of care for your stage.

    Post again if you have further queries.

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  • Robyn_S
    Robyn_S Member Posts: 197
    edited July 2013

    Hi, I had a 9cm ILC tumour and sentinel node biopsy that found macrometastases in 1 of 5 nodes removed.

    I chose to not have an axillary clearance based on a recent 2011 study that showed that there was no difference in survival rates of early stage node positive between women that had all their lymph nodes removed to those that did not. I also had chemo and radiation to the chest wall after BMX.

    I don't have lymphodema and this was a major factor in my informed decision - supported by my breast surgeon to forgo axillary clearance.

    To date bone scans and CTs prove that I am NED after 2 years- with many more years to come :)

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  • mary625
    mary625 Member Posts: 1,056
    edited July 2013

    Hi! I started out very much the same as you--a 7-10 cm tumor with knowledge that there was a positive lymph node. The tumor was reduced to about 2 cm during the chemo prior to surgery. Regarding the lymph nodes, I don't think they can find and just remove the cancerous ones. There are levels 1 and 2 of lymph nodes, and they will take all nodes within the level. The number differs from person to person. I then had to have radiation because there were 10 cancerous nodes in all with extracapsular extension (cancer growing out of the nodes). None of this can be known until the pathology after the nodes are removed. I just wanted it all out of me and to have the best chance possible at being cancer-free.



    I do have some mild lymphedema in the arm. Who knows if it will get better or worse, but it's been about the same since a few weeks after surgery. I had all of the PT which was very helpful. The lymphedema does not bother me in any way. It seems to bother others more than me. I know I'm very lucky in this regard that it does not bother me.



    Hope this helps.

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  • overjoyed4life
    overjoyed4life Member Posts: 239
    edited July 2013

    Hello,

    I was stage 3c, 22 out of 29 positive. Notice how I said WAS. I have been NED since my surgery 2 1/2 years ago. I had very little lymphoma after my mastectomy. I know everyone is different but I feel it's very important to do your exercises afterwards to keep everything flowing good.

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  • vlnrph
    vlnrph Member Posts: 1,632
    edited July 2013

    Wait at east a week or two before raising your arm after any lymph node removal, especially a full ALND: research has shown the system needs this time to begin healing (see the LE forum for more info). THEN start your rehab/stretching exercises.

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