Lymphedema or IBC

Vera66
Vera66 Member Posts: 54
edited August 2019 in Lymphedema

I guess my question is how do you tell the difference? I was diagnosed with lymphedema by my oncologist about 3 months after I finished radiation. I had cording all down my ribs, and swelling and redness in my breast. My doctor referred me to a physical therapist who specialized in lymphedema and she was great. It took about 3 months, but most of the problems went away, and I have done really well. Then 2 days ago, I got some pain in my breast, and redness in the lower half of my breast. There is redness, and kind of like small red lines. Also, I noticed dents I guess you could call them anywhere my bra had been pushing on my breast. It would eventually go away when I took my bra off. I just assumed it was lymphedema and wanted to get another referral to see the physical therapist again. I was seeing my breast surgeon for a check-up, so I just asked her. She seemed alarmed when she saw the redness and did a biopsy then and there. I'm just not sure how much she knows about lymphedema though because when I told her I had been diagnosed with truncal lymphedema and this seemed similar, she said "so how is truncal lymphedema diagnosed, I've never heard of it." Which seems really odd from a breast specialist. Does this sound like IBC or lymphedema. I don't have significant warmth, significant enlargement, nipple retraction or the peau d'orange. I also don't have a fever or anything that would indicate cellulitis. Could this have been caused by the fact that, like an idiot, because I wasn't really paying attention, I let them draw blood from my right arm last week? Any feedback would be greatly appreciated because as soon as I heard the word biopsy I really started to freak out.

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  • Trishyla
    Trishyla Member Posts: 1,005
    edited August 2019

    Hey, Vera. I have truncal lymphedema as well and what you're describing sounds exactly like what my breast looks like when it flares up. Sounds as if your oncologist is clueless about lymphedema. Many are. I had to self diagnose, and I go to one of the top cancer centers in the country.

    I wouldn't worry too much, but it doesn't hurt to have it checked out.

    Hope it turns out to be nothing.

    Trish

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  • Vera66
    Vera66 Member Posts: 54
    edited August 2019

    Thanks Trishyla. It really helps to know that you've experienced something similar that turned out to be nothing.


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  • Vera66
    Vera66 Member Posts: 54
    edited August 2019

    By the way, I don’t want to imply that lymphedema is nothing. I know from personal experience that it isn’t. At this point, the fear of more cancer is just so overwhelming that even lymphedema sounds better. Thanks again for the feedback

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  • Binney4
    Binney4 Member Posts: 8,609
    edited August 2019

    Vera, unlike arm LE, breast LE can have redness as a symptom, and it can be hard to get rid of since it's a result of the inflammation that accompanies LE. But it can also be a symptom of cellulitis, and cellulitis can "brew" for a while before it takes hold, and then it spreads rapidly. So do keep track of this and head to your doctor or the ER if there's any further suspicion it may be cellulitis.

    Chances are your LE therapist won't treat you until a diagnosis is made, since they won't treat when cellulitis is suspected. And just to confuse the issue, peau d'orange, should that ever develop, is also possible with breast LE. Sure makes diagnosis tricky--especially with a doctor who doesn't know anything about it! Sigh!

    One more thought: the biopsy is a good first step, and I look forward with you to hearing soon that's all clear, but biopsy is itself a cellulitis risk. Keep a hawk-eye on the biopsy site and act promptly if you suspect cellulitis.

    Please do keep us posted!

    Gentle hugs,
    Binney

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  • Vera66
    Vera66 Member Posts: 54
    edited August 2019

    Thank you Binney. That's super helpful. My breast surgeon is really not helpful at all. She just said "oh they call everything cellulitis" when I asked her about that as a possibility. Didn't even want to discuss it. So that just left me more confused. I called my oncologist, but she just said to wait until the biopsy results come back, so that wasn't super helpful either. I looked up symptoms of cellulitis on the Step Up, Speak Out website, and it said fever, chills, and aches, which I don't have, but it also said pain, itching, rash, and streaky red lines which I do have, so really not sure. You seem super knowledgeable. Will the biopsy site become very red? Is that something I should be watching out for? Is fever the marker to be worried about? I'm sorry to bother you, I know that you aren't a doctor, but I have already consulted two doctors, and they were not at all helpful.

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  • Binney4
    Binney4 Member Posts: 8,609
    edited August 2019

    Vera, any of those symptoms are enough to alert you to concern about cellulitis. Some people don't develop fever until later in the disease progression, so that's not definitive. If you end up going to an ER to check out symptoms do say the words "lymphedema" and "cellulitis" to everyone you talk to. That way they can make a fair assessment of your individual situation. One suggestion on any redness is to draw around the edges of the area with a marking pen so you can keep an eye on it and know if it's spreading or retreating. But even so, redness can also be a symptom of out-of-control breast lymphedema (and a lot of medical folks don't know that.)

    The biopsy site may become red and it may swell, just as any insult to the skin and tissues will. The problem is that with lymphedema present there is stagnant lymph fluid in the area that is both warm and protein-rich--excellent growing condition for bacteria. That's why lymphedema presents an extra risk for infection.

    It is so frustrating not to be able to get good answers! On the StepUp-SpeakOut website there's a page called "Essential Information on Lymphedema for all Healthcare Providers," which was written by a doctor with lymphedema. It has a printable page that might be helpful to take along with you whenever you need to discuss lymphedema with your doctors or other healthcare workers.

    Please keep us posted!

    Gentle hugs,
    Binney


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  • Vera66
    Vera66 Member Posts: 54
    edited August 2019

    Thank you so very much! That is incredibly helpful.



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  • Vera66
    Vera66 Member Posts: 54
    edited August 2019

    Thank you again Binney and Trish. Finally got results and the biopsy was negative. The rash has largely gone away, but the swelling and discomfort have remained. It seems like a flareup of lymphedema and I will be contacting my lymphedema therapist.

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  • santabarbarian
    santabarbarian Member Posts: 3,085
    edited August 2019

    Just throwing this into the discussion-- I had a slightly 'puffy' area w streaky pink lines & mild itchiness that was an aftereffect of rads-- happened in Aug and my rads was over in March! It was sort of obviously rads-related because the irritated area stopped precisely where my rads "tan" stopped (same straight line). My MO's PA said that it was a not-unusual aftereffect of rads.

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  • Trishyla
    Trishyla Member Posts: 1,005
    edited August 2019

    Glad to hear your results were benign, Vera66. That must have been such a weight off your shoulders.

    Good luck.

    Trish

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