anyone with a 6cm ILC tumor and only 1 node with cancer?

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  • TfromTulsa
    TfromTulsa Member Posts: 5
    edited July 2016

    Hi there. I had a 6cm ILC tumor as well. I'm two weeks out from my BMX. Just got path report back and my oncotype was 14. They recommended no chemo and 30 rounds of rads. It helps reading these stories. It's so scary.

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  • mbasford0
    mbasford0 Member Posts: 5
    edited August 2016

    I had complete node removaland so far no lymphedema, I take care of my arm with regular exercise. My preference was to remove all chance of the cancer spreading - if I don't need it take it out - good luck x

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  • Momine
    Momine Member Posts: 7,859
    edited August 2016

    Falabella, lymphedema risk is real, but lymphedema is still not a given. You should ask the surgeon what percentage of his patients get lymphedema. Then ask another surgeon. It is important to have a dedicated breast surgeon and not a generalist.

    After surgery, there are several things you can do to reduce the risk. #1 is to get a referral to an LE therapist for PT. But in general, if you follow guidelines, wear a sleeve if/when needed, try to stay within normal BMI, get some exercise etc, you can head the LE off at the pass in many cases.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2016

    No lymphedema so far with me. I do lift weights (weight machines), attend regular weekly bikram yoga classes, and keep my BMI a bit below 20, and have done this for years. After surgery I visited a lymphedema specialist at my hospital's PT department and she gave me a sleeve, showed me the massage technique, and gave me a printed instructional diagram. I keep them with me when I fly. So far I've not needed either, in any situation.

    But my general surgeon has told me more than once that it can occur at any time--just because we haven't seen it for years doesn't mean we won't develop it at some point. But other than keeping weight down and being active, I don't know if there's much to prevent it.

    It's just one more of the rather worrisome burdens we carry with us in our new normal post bc state. If the general public only knew what we live with the rest of our lives after a dx as we've had...

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  • TfromTulsa
    TfromTulsa Member Posts: 5
    edited September 2016

    I had a 6cm tumor but the nodes were clean. Well, isolated tumor cells but it still have me a 0 score for the TNM number. I did not get clear margins.

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  • damazon
    damazon Member Posts: 66
    edited March 2017

    Hi Agnes G,

    I have pretty much the same stats as you. Actually, two nodes, but second node only ascertained on deep pathology testing. I am six years out from diagnosis yesterday (International Women's Day). Life is pretty good. Stay positive.

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  • Annette_U
    Annette_U Member Posts: 111
    edited March 2017

    Yup! over 6cm and no nodes except three of 5 out were super big ( 7mm-2.7mm). Had chemo first though. I'm doing fine NED since 2013.

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  • wallisrose
    wallisrose Member Posts: 2
    edited September 2017

    I was diagnosed with a 5cm ILC tumor in July with negative nodes after biopsy and MRI. I am scheduled for a bilateral mastectomy next week. I am so worried about bone mets. My back has hurt in the same area for at least 20 years. But the past year I have had problems with tingling in my left hand and now my left foot. I had xrays of neck and found some degeneraton of discs in July. They have not given me a bone scan. My husband was just diagnosed with stage 4 prostate cancer with mets. He is being seen by an excellent group and I am staying closer to home for convenience. I'm terrified of a bone scan and the results. I'm interested in any experience with negative nodes and bone mets. I know ILC is slow growing so I am even more concerned. Not sure I can handle all of this.

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  • Annette_U
    Annette_U Member Posts: 111
    edited October 2017

    Wallace's, hang in there ........nothing to fear but fear itself! It's just a word.......get the scan and move forward......Best to support each other right now! Listen to an audio book, watch a good PBS series together, walk.....just make sure you both trust your treatment team . Try not to bog yourself down in worry

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  • Mojojennijo
    Mojojennijo Member Posts: 173
    edited October 2017

    I have a 7.3 cm primary ilc tumor. Had mri, ct, bone scan, pet scan and us of nodes. Stayed a stage 2b due to tumor size alone and no nodes or mets. You can always ask your dr to run a scan if it would ease your mind.

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  • Dodgerick
    Dodgerick Member Posts: 72
    edited June 2018

    TfromTulsa, I was so happy to read your post! My ILC (along with DCIS) was lymph node involved (extracapsular extension). With an ONCOTYPE DX score of 17 my oncologist determined that chemotherapy would not benefit me, I completed 5 weeks of radiation on May 31. I'm so happy that I happened upon this post! Thank you, thank you, thank you! There are other survivors like me out there!Thank you!

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