Cellulitis, lymphedema or something else?

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lola12
lola12 Member Posts: 127
edited June 2014 in Lymphedema

Hi Everyone, 

Boy, I would really appreciate any thoughts or opinions!

I have had two cellulitis two times since my uni-mastectomy (no recon) and sentinal node (2 nodes) removed over a year ago.

Last week I noticed some puffiness under my sentinal arm and near my incision scar. I also noticed that my rings were tight. No redness, no fever, just felt like I slept the wrong way and had some puffiness.

Went to my oncologist who gave me a Doppler ultrasound to start. No dvt, no blot clots, no masses. So we started to treat with 5 days of keflex. I went to my oncologist again today with minimal lessening of the swelling. So, the plan seems to be two days worth of antibiotic shots. If no better by next Monday, a chest CT????? If nothing on that, PT.

To me it seems more like mild lymphedema. Am I missing something?

My oncologist said she hates to do CT scans, because 1 in 3 shows a false positive. Does this all make sense?

I am getting more and more worried. I would appreciate your thoughts.

Lola 

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  • ChrisNM
    ChrisNM Member Posts: 47
    edited May 2012

    Lola-

    The best thing to do, if you trust your oncologist, is to rule out the things that give your doc concerns.  Before I had a CT done, I'd ask if we could see a PT (who is certified in manual lymph drainage) and see if they thought it could be a lymph issue. Maybe then a CT, unless your onc has other reasons for wanting one.

    My LE is after snetinel node biopsies (1 node in one arm, 5-6 nodes in the other, and slight swelling and not being able to wear my wedding rings or fit into shirt sleeves I fit into pre-surgery were my only real symptoms.  I know cellulitis can occur with LE, but also from other things.

    Praying you get good advice, and get to the bottom of the problem!

    Chris in NM

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  • carol57
    carol57 Member Posts: 3,567
    edited May 2012

    Lola, I second Chris' suggestion to try to get into a lymphedema therapist. You can get good help finding a good therapist here: http://www.stepup-speakout.org/Finding_a_Qualified_Lymphedema_Therapist.htm   And if you explore this website (for BC survivors with LE, created by BC survivors with LE, including some true experts), you'll find lots of insights and information that will help you make a strong case for the referral if you need to push a bit.

    While you wait (asking for LE therapy referral can be frustrating in how long it seems to take), you can try some simple strategies without any downside if it turns out not to be lymphedema.  Try elevating that arm, when you can during the day, and at night on a pillow as you sleep.  Several times each day, lie down, and take huge deep breaths, into your belly (if you had a book on it, the book would rise). Slowly exhale through pursed lips (watch that belly go down), and repeat four or so more times. Really squeeze with your abs to get the last bit of air out each time.  Several times a day, put your arm up in the air and pump your fist 20 times, slowly.  All of these help get the lymph moving. 

    I'm sure others will come along to offer more suggestions. You can start on these right now, and feel like you're doing something productive. 

    Best of luck!

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  • kira66715
    kira66715 Member Posts: 4,681
    edited May 2012

    Lola, it sure sounds like lymphedema--the cellulitis is damaging to the lymphatics and can be a sign of lymphedema, so it's a vicious cycle.

    I'm not sure why all the imaging and antibiotics, when it sounds like lymphedema, but let your onc do what he/she needs to do to feel that they've investigated the issue.

    Please get a referral to a qualified lymphedema therapist, and we have a page on the site of what to do while waiting for lymphedema treatment. Also, there's information for health care providers, as unfortunately, most are not informed about lymphdedema.

    http://www.stepup-speakout.org/How_You_Can_Cope_with_Lymphedema.htm#while%20waiting

    http://www.stepup-speakout.org/essential%20informat%20for%20healthcare%20providers.htm

    I'm with you, this sounds like lymphedema. And it's treatable.

    Kira

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  • lola12
    lola12 Member Posts: 127
    edited May 2012

    Thank you all for the input. Based on my reading, I also think its truncal LE. 

    Should I opt out of the CT? I just worry about all the false positives with this test, and I just dont know if I can handle all the worrying again.

    Lola 

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  • kira66715
    kira66715 Member Posts: 4,681
    edited May 2012

    Lola, I think it would be best to talk to your doctor and discuss your concerns--and find what is the purpose of the CT.

    If the doctor doesn't know that much about LE, you can share the stepupspeakout page.

    Let us know what you decide.

    Kira

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  • kcshreve
    kcshreve Member Posts: 1,148
    edited May 2012

    I would want to know the purpose of the CT, or any other testing procedures, personally.  What are they looking for?  If the testing is just to cover general bases, a LE therapist may be far more appropriate and effective.  Just my opinion.

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