Invasive Lobular Cancer

Colleenkelly
Colleenkelly Member Posts: 99
edited June 2014 in ILC (Invasive Lobular Carcinoma)

Hi everyone. My name is Colleen. I am 43 years old and recently had a double mastectamy for a 6.5cm tumor in my left breast. One lymphnode was positive. I received a phone call from my surgeon the other day and she said I was going to have to have radiation and chemotherapy because of the size of it. I have not been staged yet and am scared to death that it has spread. Are there tests I should insist on having to make sure. I meet with oncologist on Monday. Thanks, Colleen

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  • Rdrunner
    Rdrunner Member Posts: 309
    edited January 2013

    Hi Colleen

    Im 44 and my tumour was 6cm with no nodes (which Im having a hard time believing still). I see my oncologist this week but my surgeon said the same about the size that because it was over 5cm I would most likely need chemo and rads. Other staging tests I had before sugery were, breast mri before surgery, bone scan , abdominal and pelvic ultrasound and chest x ray. They were all appeared normal. I am however asking my oncologist for abdominal mri/ peritoneal/ retroperitoneal mri when I see her this week.

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  • hopeforlife
    hopeforlife Member Posts: 23
    edited January 2013

    Hi Colleen, 

    A 6.5cm tumor puts you at stage 3 regardless of the number of lymh nodes involved. You should ask your oncologist about getting a CT scan or PET scan if you haven't had one yet to see if there is active disease anywhere else in your body (hopefully not). If you don't have symptoms like bone pain, chronic cough, morning headaches or abnormal LFT's, I wouldn't worry about metastatic cancer at this point. 

    Good Luck

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  • ohio4me
    ohio4me Member Posts: 491
    edited January 2013

    Same for me - because of the size of the tumor I had chemo. Because I had positive nodes I had radiation.

    You can have other tests such as CT Scan or Bone Scan or PET Scan - those will only tell if the cancer has spread. You will most likely still be in need of chemo and rads for breast/ node findings alone.

    I guess I didn't question much - I just went along with the program. I did have a PET Scan and an MR Brain, before chemo, to check for mets but they were negative.

    Maybe you need to ask for some tests to get peace of mind. I was anxious going for the tests and waiting for results but it did make me feel better.

    Best of everything to you.

    Diane

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  • JSwan
    JSwan Member Posts: 81
    edited January 2013

    I had a PET/CT scan shortly after being diagnosed.  You might also want to consider asking for the Oncotype DX test.  I had it done and ended up not doing chemo despite my tumor size and positive node.

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  • Colleenkelly
    Colleenkelly Member Posts: 99
    edited January 2013

    Thank you for the responses. Diane, are you done with treatment yet?

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  • Colleenkelly
    Colleenkelly Member Posts: 99
    edited January 2013

    The oncotype dx test sounds great, but when I looked it up I meet all of the qualifications except that it says you have to be post menapausal to have lymphnode involvement. Do you know if they make any exceptions? Thanks

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  • JSwan
    JSwan Member Posts: 81
    edited January 2013

    Colleen -- I don't know for sure what the current qualifications for the Oncotype Dx are.  I just checked on the company's web site though and it says that for node positive you need to to be post-menopausal (which I was).  Maybe your doctor would know if there are any exceptions or changes to the qualifications.  Best of luck to you.

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  • Chocolaterocks
    Chocolaterocks Member Posts: 364
    edited January 2013

    Colleen,

    I had the oncotype  test and I am pre-menopausal and had no node involvement (3.8mm) also which is small, but had it done. Don't give up.

    Good luck,

    CR

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

    Hi Colleen, before getting a treatment plan, I had a CT, a bone scan and an MRI of my abdomen and chest plus a bunch of blood tests. It seems prudent to me to check thoroughly at the start, also for peace of mind. I had more nodes than you and no mets were found.

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

    Hi colleen,

    I had a 2 c. tumor with 6 nodes pos. I had a lumpectomy, chemo, rads and will have a bmx w/recon later this year.  I had blood tests, MUGA scan, EKG, and PET scan. After chemo ended I had a breast mri and a pelvic ultrasound.  

    Claire

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  • herstrong
    herstrong Member Posts: 69
    edited January 2013

    Having a tumor 5 cm or larger with no lymphnode involvement makes you stage IIb, not stage III. If you add at least one lymphnode, it is stage III. Here is the BCO link to staging: http://www.breastcancer.org/symptoms/diagnosis/staging#stage2

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

    I was not given the option of Oncotype due to knowing I had a positive lymph node. I was pre-menopausal, but I don''t recall discussion of that as related to the Oncotype test. I had the CT scans and bone scans mentioned above, and it had not spread.

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  • Rdrunner
    Rdrunner Member Posts: 309
    edited January 2013

     Well Im getting nervous now. Seeing my MO tomorrow for first appointment, so will find out what she is recommending for treatment etc. I guess since my surgery before xmas Ive been doing great physically and even enjoyed the xmas holidays and almost forgot I have BC. Back to reality tomorrow for sure.

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