Breast Lymphedema

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eggroll
eggroll Member Posts: 150
edited January 2016 in Lymphedema

A few days before my radiation treatment started, my breast turned up with pinkness. I thought maybe it was from a shower, and didn't think about it until the day my radiation was supposed to start. The nurse had me get it checked out and the general practitioner just said he didn't think it was an infection, but to come back if it got worse. Well, by the next day I was really freaking out. Looking and looking, is it worse? Is it hot? A couple people expressed concerns it could be inflammatory breast cancer. And indeed that did happen to someone on these boards.

So I went to the radiation doctor that was working the next day. It was his first day on the job and he said he was confident it was not an infection and to go ahead with radiation. I said, "But what is it?" And he said, "It could be anything."

Another 24 hours of spiraling into fear! The next day I saw my normal radiation doc and she explained that my breast was swelling and it was caused by scar tissue and that after radiation was done I should go to the Lymphedema Physical Therapist who would show me lymphatic massage.

Sure enough, I found a friend who had experienced this same problem before her radiation. And it worked out fine. Finally I found a website about the symptoms of breast lymphedema. And pink or red skin can be one of them. Since then, I've had three radiation treatments and my breast is definitely swollen and I'm getting the larger pores (orange peel) and it is now a little hotter to the touch as well. It can be pretty terrifying having all the symptoms of Inflammatory Breast Cancer and not much on the Internet to comfort you.

So I am posting this thread in hopes you are searching for something about pinkness in the breast not caused by radiation or before radiation even starts . . . I know I am very relieved and hope you will be, too. Here are the symptoms you can have and I have most of them:

-The area feels heavier, firm or hard (fibrotic) in places

-The skin may look inflamed (red or pink) and feel warm to the touch

-The skin often feels tighter, tender, full or painful

-Indentations on your skin become noticeable from your bra or clothing

-The area may look different in shape and size

-Feelings of sensitivity or numbness due to the effect of surgery on the nerves maybe apparent

-There maybe a 'Peau d'orange' (orange peel) appearance to the skin

Source: http://www.nhs.uk/ipgmedia/national/Lymphoedema Support Network/Assets/BreastandTruncalOedemaLSN8pages.pdf

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  • labelle
    labelle Member Posts: 721
    edited December 2015

    I had a lot of those symptoms too. My heavy swollen and tender breast was caused by a seroma from my surgery. I had indentations from my bra (due to breast swelling the fit was a bit tight on that side). My pores got larger during radiation and after only a few treatments-they continue to be larger and darker (due to radiation per my breast surgeon, her PA, and my oncologist) even after 10 months. Radiation does a lot of odd things. Numbness around SNB area is common-I continue to experience this.

    I just had my breast re-examined (I thought I felt a new lump) by the surgeon's PA, mammo and ultrasound. They decided it is edema of the breast caused by surgery/RADS.

    This disease makes us all a bit paranoid I think, but in my case my breast was very tender and swollen prior to RADS and got progressively worse during treatment. The radiologist said, no big deal just RADS, However, I had an infected and walled off seroma that required emergency surgery. In retrospect, I wish I'd gone straight to my BS, rather than relying on the radiologist who was very cavalier about my symptoms. If in doubt, see another one of your doctors, ASAP, because we all end of up plenty of doctors on our speed dials.

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  • jill47
    jill47 Member Posts: 351
    edited December 2015

    Some of your symptoms sound like breast cellulitis which I had in March this year(both breasts), same symptoms, BS dx me & put me on 2,000 mg Keflex daily for 10 days; took a few days to work but eventually it did. I thought at the time it was IBC too, scared the crap out of me cuz it happened overnight and 3 years out of bmx. Since the cellutlis and hot summer got a referral to a LE therapist by my PS b/c of pain, feeling of swelling and heaviness in my arm & the constant tightness I've had in my chest since bmx. LE therapist dx me w/ truncal & arm LE, my breasts still have orange peel since the cellulitis and are pink in areas. Been in LE therapy for 10 weeks straight, compression garments and MLD are helping my arm but I worry about my reconstructed breasts, barely any improvement. If I were you I would not rule out cellultis and insist on trying a strong antibiotic like I had that treats staph & strep. If your symptoms improve, most likely it is infection. But LE can cause cellulitis so you aren't out of the woods from LE since you had 6 nodes removed.

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  • eggroll
    eggroll Member Posts: 150
    edited December 2015

    Oh wow, I am trying to hard to be a cooperative patient, but it's so hard. Like you say, labelle, they can be cavalier. And it does look a lot like cellulitis. It doesn't seem to be getting much worse, I would think by now I would have a fever if it was an infection. I was going to call the lymphedema PT tomorrow, she probably won't have time to fit me in, so yeah, the breast surgeon. Not sure I will get much further with her to be honest. I like them all personally, I just feel like they are all very busy and I'm not that high on their priority list.

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  • jill47
    jill47 Member Posts: 351
    edited December 2015

    Hi Eggroll - I never had a fever w/ my cellulitis, One doesn't have to have all symptoms to be be cellulitis. I've read on the IBC page that doctors usually prescribe antibiotics to rule out cellulitis before going down the IBC road to dx.

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  • LymphActivist
    LymphActivist Member Posts: 64
    edited December 2015

    I have been shouting for over seven years that breast lymphedema is becoming a very widespread problem, mostly not understood by physicians, oncologists and radiologists. The removal of as few as one lymph node as part of a sentinel lymph node biopsy can cause lymphedema of the breast when that is the key node in the drainage network for that breast. See http://www.lymphactivist.org/review-baker-2014.php and http://www.lymphactivist.org/review-johansson-2014....

    If you are interested in learning more about Breast Lymphedema and Delayed Breast Cellulitis and what is the recommended treatment please see the presentation on the subject on my website at http://www.lymphactivist.org/breast_lymphedema_for_therapists.pdf

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  • eggroll
    eggroll Member Posts: 150
    edited December 2015

    I get to see the brand new radiation doc again tomorrow because my normal radiation doc is out on Thursday. I was his first patient ever last week. He seemed so thrilled to tell me that it wasn't an infection. Like no news is good news... bless his heart. I got to meet my nurse navigator FINALLY yesterday. I've been asking for her since August. When she figured out what happened, because of a discordant biopsy followed by a surgical excision, I wasn't on her radar until now. She gave me a hug and said she was sorry, and that made all the difference. We also changed my breast surgeon, and got me an appointment with a new lymphedema therapist a week from tomorrow -- both new providers will be closer to home, saving me bridge tolls and time. I'm hoping they will also be less busy and more able to really give my appointments some thought. My heart goes out to doctors and all medical folks these days, I know they are doing their best and want to save lives and relieve suffering. And all they get are the irritated blaming from people like me. At the same time, we do have to speak up. My pinkness looks about the same but it is definitely more swollen. I wore the sleeve on my arm as long as I could stand it yesterday and took a pain pill. My arm has never been all that swollen. It's my breast mostly. Yes, it makes sense to me when they take out all six nodes that the breast drains directly into, that my boob would get stopped up. I'm not a doctor, but dang that makes total sense. LymphActivist, I'm going to check out your links. Thanks for fighting the good fight. It is a scary condition all around.

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  • KleeKai
    KleeKai Member Posts: 29
    edited January 2016

    I was diagnosed with cellulitis of my right breast on new year's eve. I was started on Keflex but developed hives. Of course this had to happen over a long holiday weekend so I called the covering radiation oncologist and he switched me to clindamycin 300mg 4x/day. I called back on Saturday morning because I awoke to find new hives and the redness on my breast had worsened. He added doxycycline 100mg 1 pill twice a day. He didn't think the new hives were related but I suspect they are a mild reaction to the clindamycin. (I'm allergic to biaxcin, which I didn't realize is in the mycin family of drugs.) I'm also allergic to all the cillins - I get hives.

    Here it is Sunday morning, and my breast is now totally red and I am so very itchy. Hydrocortisone cream OTC doesn't work that well to calm the itchiness. I may as well be using it like body lotion. No problems breathing or swallowing but I am getting nervous. My regular appointment with med onc is Tuesday. The rad onc asked me to stop in before seeing med onc so he can evaluate whether treatment is working. He gave me instructions to call the covering if I have a drug reaction or it worsens. I'm on the fence - I was hoping to see even mild improvement on the redness but instead I see worsening. I've been on clindamycin for 4 days and have only had 2 doses of the doxycycline so is it too early to see a difference?

    Advice is welcome.

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

    KleeKai, uncontrolled cellulitis is a serious emergency situation. You can call the covering physician again, but you really do need to be seen RIGHT AWAY. An emergency room visit is definitely in order.

    Here's information on cellulitis and lymphedema:

    http://www.stepup-speakout.org/Emergencies_and_Med...

    Please get help right away, and keep us posted!

    Gentle hugs,
    Binney

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  • eggroll
    eggroll Member Posts: 150
    edited January 2016

    OMG Kleekai, call your doc immediately! Go to the hospital if you can't get through to someone. Let us know how you are doing. There must be some genetic connection between breast cancer and a desire to please even if it harms us. Don't be shy, get help for that infection now!

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

    KleeKai, thinking of you! Hoping you've gotten good help and are recovering wonderfully. Please take it easy for a while, rest up, be well!

    Hugs,
    Binney

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