Lymphedema as a Symptom of Breast Cancer

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scrunchthecat
scrunchthecat Member Posts: 269
edited January 2016 in Lymphedema

Hi there,

I had symptoms of lymphedema before I was diagnosed with breast cancer. That's right - I noticed swelling in my right arm before I had a biopsy or surgery or even chemotherapy. I just though it was "weird" and I never associated it with possible breast cancer. Once I was in the process of being diagnosed, none of my doctors had ever heard of anyone having lymphedema before treatment and had nothing to say. Fortunately I found a lymphedema-certified PT about three months in.

Has anyone else had a similar experience? Did anyone else have lymphedema as a symptom of breast cancer??

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  • floaton
    floaton Member Posts: 181
    edited January 2016

    I did not have symptoms prior, but only had one micromet in one lymph node, small enough I was considered technicall node negative. I seem to remember though someone on here mentioning pre-diagnosis le - does anyone remember who?

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  • Binney4
    Binney4 Member Posts: 8,609
    edited January 2016

    scrunchthecat, so glad you've landed with a good lymphedema therapist! It's certainly possible to develop lymphedema when tumor growth impinges on the lymphatics and blocks flow, before any treatment is started. But it does seem to be rare.

    When a tumor is blocking lymph flow and it can't be removed or reduced (by surgery, chemo and/or rads) it may not be possible to reduce the swelling with Manual Lymph Drainage or simple compression. In that case good tissue support from well-fitted day and night compression garments can really make a difference in providing both comfort and maximum use of the hand and arm.

    Be well! Gentle hugs,
    Binney


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  • rainnyc
    rainnyc Member Posts: 1,289
    edited January 2016

    Scrunchthecat, I didn't have LE as a presenting symptom of BC, but the lymphedema therapist I've been seeing says it does happen. A tumor in one or more lymph nodes might prevent lymph fluid from circulating properly, so you might see swelling.

    Glad you found a good therapist!

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  • LymphActivist
    LymphActivist Member Posts: 64
    edited January 2016

    Lymphedema of the breast is one of the chief diagnostic symptoms of inflammatory breast cancer. A less common case is where unilateral arm swelling can be a diagnostic symptom of invasive breast cancer. This was described in a case study in the Journal of General Internal Medicine 2007;22:675-6 Breast Cancer Presenting as Unilateral Arm Edema by Zakaria S, Johnson R, Pockaj BA and Degnim AC. The conclusion of this case study was "Breast cancer is a common disease that can have uncommon initial presentations, which divert attention from the underlying malignancy. In our patient, arm lymphedema resulted from extensive nodal involvement from breast cancer. This case report highlights the importance of having a high clinical suspicion for breast cancer in a patient who presents with unilateral arm lymphedema. Failure to recognize this presentation can lead to misdiagnosis or a significant delay in diagnosis and treatment."

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  • scrunchthecat
    scrunchthecat Member Posts: 269
    edited January 2016

    Thanks, everyone, for the response. LymphActivist - thanks so much for the citation! I was worried, for a while, that it could be IBC misdiagnosed as IDC, but after reading further I am pretty sure it is IDC. I am putting a link to the study you cite here for future reference: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1852908/

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  • glennie19
    glennie19 Member Posts: 6,398
    edited January 2016

    That is an important thing to know. Yet another symptom of BC that could easily be dismissed by medical personnel who are not "aware" of LE.

    When they talk "awareness" they need to get the word out of any and all possible symptoms,, not just a lump that shows up on mammograms.

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  • GypsySue
    GypsySue Member Posts: 17
    edited January 2016

    Scrunch!

    I am glad you posted this. I've tried talking to various oncologists about this but they always manage to change the subject without giving me any enlightenment or affirmations.

    I had axilla web syndrome as the only symptom of breast cancer. I had an itchy armpit for 2 years but no swelling or rash or redness. Routine mammograms did were always negative. Then, in addition to the itchiness, I developed a cord in my armpit just under the skin. At this point, my GP ordered an MRI which showed enlarged axilla lymph nodes. After all the diagnostic scans were done, it turned out I had a very small tumor in my breast, multiple involved lymph nodes much more active on PET scan than the breast tumor, a tumor in my spine, and enlarged hilar lymph nodes. So, I was metastatic from the get-go. I have now been in treatment for 2 years (Femara for 18 months, and now Tamoxifen due to too much bone loss). While on Femara, my breast tumor and spinal tumor disappeared. The stubborn axilla lymph nodes still show up on PET scan but are greatly reduced. In 2 weeks, I will have my first PET scan since switching to Tamoxifen. Wish me luck!

    I used to get very angry that I went 2 years with this symptom and my GP was clueless. But I now believe that by the time my lymph nodes were so enlarged with cancer that I had that itchy sensation, I was probably already metastatic.

    Best Wishes to All...

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  • Binney4
    Binney4 Member Posts: 8,609
    edited January 2016

    Sue, thank you for sharing your experience with us. I'm so sorry it was so slow to be picked up on, but I find your willingness to let go of the anger that came from that inspiring. Sending you warm, healing wishes for your up-coming PET scan. Please do keep us posted.

    Gentle hugs,
    Binney

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  • cke14
    cke14 Member Posts: 7
    edited January 2016

    This happened to me. I had swelling in the breast (the right breast just looked like it was saggy) and I just thought it was due to ageing and large breasts, I was 46 at diagnosis. I work at a hospital and mentioned the swelling/sagging to my friend and she said it was not a good sign and insisted that I get it looked at. The mammo did not show anything but an ultrasound of the axilla showed a tumor in the lymph node. They could not see the breast tumor until they knew it was there. I now have LE after surgery. My new moto, do not ignore anything.

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