ILC Local Recurrence concerns

Robyn_S
Robyn_S Member Posts: 197
edited June 2014 in ILC (Invasive Lobular Carcinoma)

I was diagnosed with a large ILC tumour (8.5cm close to chest wall and 1.6 cm) and am going through the tense time of waiting for test results on a new 1.5cm lesion on the chest wall near the original tumour site.

It was an incidental finding - I had a cord like stringy thing pop up overnight in my arm pit. I had a study visit two days later and showed the MO. Of course it is an ASAP US scan which confirmed that it was a clotted off vein -superficial thrombophlebitis. The US also found this lesion which is not palpable. Core biopsy yesterday and a few days wait for results now.

Since dx in 2011 I have had BMX, FEC chemo x 6, and 25 rads to the chest wall and DIEP reconstruction last year ..on Femara. The med staff mention fat necrosis as a possibility but this new area is above the DIEP reconstruction and located within the chest muscle. The real concern is that I have been experiencing the deep itchy feeling  in the area over the last couple of months - not feeling any lump, I simply attributed it to post rad healing (2 years on?)

Keeping it together for now but more worried than the first time around as I have been faithful in my treatment, health and lifestyle concious.

Has anyone else experienced loco-regional recurrence with ILC? How did it present with ILC  often being larger tumours that dont usually form discrete lumps?

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Comments

  • Rdrunner
    Rdrunner Member Posts: 309
    edited November 2013


    I had a 6cm tumor very close to chest wall, only 1mm margin. I had mx and rads because of this and had the chemo and on tamoxifen but fear it showing up in chest wall also. Sorry i cant help but i know its something the doc worry about with me also but im only 1 year post surgery and less than six months post rads

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  • kareenie
    kareenie Member Posts: 339
    edited November 2013

    i had locoregional recuurence of ilc fifteen years after original dx. presented as a one cm palpable lump in axilla.behind pectoral muscle and invaded pec muscle. originally had mx with no rads so second time had neo adjuvant chemo wide local excision including part of muscle then rads. hang in there hope u get results pronto and especially that it is benign.

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  • Robyn_S
    Robyn_S Member Posts: 197
    edited November 2013


    thanks Kareenie - it is good to hear of others experience with problems that they have overcome.


    Waiting is the worst feeling! I really thought that I had left all this way behind- hoping this is just a bump in the road ..

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


    Just got an all clear myself after being followed via MRI since diagnosis (same time frame as your ordeal except I did not have radiation).


    How did they access the area for biopsy? I have fat necrosis from DIEP but was worried about chest wall involvement.


    Hope your pathology report comes in soon and is benign!

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


    No words except virtual hand-holding.


    I had a fat deposit within a year after bilateral mastectomy and it was surgically removed and was indeed fat.


    Mine is also close to chest wall and I have often wondered how on earth they would even find it...no scans, no labs, so palpate and hope they would notice something.


    I do have an accidental finding on my ovary....still waiting for ultrasound and we shall see what it is.


    best to you. This never seems to get easier, does it?

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  • kareenie
    kareenie Member Posts: 339
    edited December 2013

    robyn please do let us know what your results are...we are all holding our breath  wiith you.

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  • Robyn_S
    Robyn_S Member Posts: 197
    edited December 2013


    Thank you for all your supportive words, I get the results of the core biopsy on Thursday. It was a US guided biopsy into the chest muscle just like for breast tissue. This scares me more than any test before as it means that all the tx I've had - and the femara, may not have worked to completely clear the cancer.


    I am hoping that it may be an artifact following Breast reconstruction or rads.





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


    Fingers crossed Robyn. Let us know.

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  • Robyn_S
    Robyn_S Member Posts: 197
    edited December 2013

    Wonderful news! All benign! The path results showed only fat and normal muscle so it is officially fat necrosis!!

    The best christmas gift  - now to finally get some sleep without the what ifs!

    Thank you everyone for your kind wishes! it must have worked!!

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  • sgreenarch
    sgreenarch Member Posts: 528
    edited December 2013


    Wonderful news!

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


    Robyn, YAAAYYYYYYYY!

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


    Always a relief.


    Enjoy the much needed sleep!!!

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  • Rdrunner
    Rdrunner Member Posts: 309
    edited December 2013


    so happy for you!!!!! enjoy that sleep.

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  • kareenie
    kareenie Member Posts: 339
    edited December 2013

    great to hear...yay  robyn

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


    AWESOME!!!!!!

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  • sloyd66
    sloyd66 Member Posts: 202
    edited January 2014

    Happy for you Robyn! Happy New Years ladies!  I was just reading through some post on the discussion bds. I'm going through Rads now going on treatment 8 only cause I had to miss three days, Christmas, New Years, and then yesterday due to weather. But I wanted to read up on ILC, my dr said its a classic in women. I just pray when I'm finish I don't experience this again. Cause I have to agree the waiting on everything is the worst of them all.

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