Breast Lymphedema

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Beachnut
Beachnut Member Posts: 17
edited June 2014 in Lymphedema

I had a lumpectomy back in June of 12, stage 1, with 2 lymph nodes removed.  Radiation followed that ended 6 months ago.  I now have lymphedema in my breast - have had it actually for a few months now, but everytime I would go to the doctor, all I was told was "you're not healed yet on the inside"....it wasn't until recently that the word lymphedema was used and then I was referred to a PT...I went for 6 weeks and nothing really changed.  She did the massages & told me how to do them.  I tried a compression insert into my bra, but that just made me itch.  My breast is hard, leathery, a dark tan color, lumpy & sometimes painful.  I saw my radiologist yesterday & he implied that my problem might be caused by the yeast infection I got on my breast & said he hadn't seen anything like this in 5 years - ???  I'm not buying it.  He suggested to get me on Trental & Vitamin E.  When I googled the medications, it led me to links that described my condition to a T:  Radiation fibrosis (in addition to the lymphedema).  My left arm is only slightly swollen & my PT wanted me to wear a sleeve on my arm.  Well I put it on first thing this morning & wore it for hrs.  Next thing I know, after removing it, my breast was worse!!  I have put in a call to her.  I start the medications tonight, with a meal.  Has anyone had any of this before?  If anyone can give me any information, suggestions, ideas, etc., I would sure be greatful!!  I am going nuts and just want all of this to get back to  normal, if that will ever happen - thank you so very much.....

Becky

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited March 2013

    Beachnut, You will have to wait until our expert gals come on board. Meanwhile have a look at the site

    stepup-speakout.org. It is all on Lymphedema. Some girls here on the thread made the site.  You will gain some incite there.

    You do have a problem so be sure to stick with us for help.Wink  You probably should be either wearing a gauntlet or a glove so your arm LE fluid doesn't work its way into your hand. Ask your PT about this. Although she may not know. Make sure she is qualified. The website I gave you tells you how to find a qualified therapist.

    There is a great product out there called swellspots. One is shaped to cover your breast and go under your armpit and across your back. This drains nasty lymph out of breast and helps your trunk too. If you have a thick feeling behind your pit, like you have a egg placed back there then you have truncal LE too. Slip that swellspot into a tight cami (Underamour is better than cami if you have pit swell, one size smaller, mens compression tee)  for relief when you sleep or when you are at home. Maybe you wear one already?

    Sleeve wearing at first is for about a hour and slowly increase your time. I wonder why the person that set you up for your sleeve didn't tell you. Maybe they are not qualifed.  Yup... your in trainingWinkSounds like your arm drained into your breast as you swelled more. Not sure though. Experts... help! Don't know much about rad damage but some girls here do! I do have a darker skin on my rad side still, and I have been treated last 2005

    You'll be OK, take a few deep breaths daily to stimulate lymph system and drink lots of water. Oh and you get a big sloppy kiss from me to help you feel better.Kiss I don't give them out often...Only to those in dire need.Smile

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  • kira66715
    kira66715 Member Posts: 4,681
    edited March 2013

    Beachnut, trental and vitamin E have been studied for radiation fibrosis, and one of the women on this board, has had very good results with it.

    Breast lymphedema is very common with SNB, as the path out of the breast is blocked. A recent study indicated almost half of women develop it--with redness and swelling common.

    I worked in radiation oncology for 3 years and followed many women and the changes you're describing usually occured later--fibrosis takes time. But, this is the best time to intervene with the trental and vitamin E to try and prevent further fibrosis.

    Some women who have underlying lupus or connective tissue diseases had exaggerated responses to radiation--just an FYI.

    Breast LE can migrate into the arm, and it's all such a balancing act as compression can push fluid into spaces where you don't want it.

    Here is a link to breast LE on SUSO:

    http://www.stepup-speakout.org/breast_chest_trunckal_lymphedema.htm

    My opinion, for what it's worth, is that the trental and vitamin E are relatively harmless medications and radiation fibrosis is something you want to minimize.

    Good luck and let us know how you're doing.

    Kira

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  • purple32
    purple32 Member Posts: 3,188
    edited March 2013

    Becky

    I do not have all your symptoms ( e.g the leathery texture etc ) because I had NO rads. at all, but I do have breast LE.  In fact, it  was the first thing I showed to my DRS. (and thy denied it ) which  made me play a  waiting  and researching game until I discovered this thread.... the rest is history.

    Kira  is the expert here and hugz led you in the right direction with the SUSO site.  When ever I see someone mention a sleeve and not use the word gauntlet  I get a little concerned.  ( I also have hand LE and must wear a glove)

    Please be sure you have hand protection along WITH that sleeve.  Do not wear the ' sleeve alone".

    Good Luck to you - it is a learning process, and these fine ladies will help.

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  • Beachnut
    Beachnut Member Posts: 17
    edited March 2013

    thank you all so much and already I feel a little better.  I am going to check out that site right now.  I do agree, I think when I wore than sleeve, all it did is push the fluid into my breast, which is already swollen...my pt, who is suppose to be very good & knowledgeable in her field, just said wear the sleeve & glove in the morning until noon - that would = 4 hrs...I know she tried to insert something into my bra to wear at one point, and also has encouraged me to get some kind of compression bra/camisole too.  I am trying to do that, but having a difficult time in knowing the correct one to buy...thank you all again and I will check back soon.  My radiologist said I was to take the trental & vit. E 3 times a day w/food - however I only eat 2 meals a day with some snacks inbetween...I am wondering if it really maks a difference if you take it 3 times a day vs. 2 times a day - anyway, thanks so much!!!  xo, Becky

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  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2013

    Becky, the question to ask your doctor is whether one of your snacks is large enough to handle the Trental/E. You want to hit this now, and with the full dosage.

    At the very bottom of the page Kira linked to, there are five options for breast LE coverage: binders, camis and shapewear, sports bras, compression bras and swell spots that can be inserted in any of those. I wonder if what the PT tried in your bra was actually a Swell Spot (which is fabric-covered and not likely to cause itching) or one of the foam-sheet products (which I can't wear without a cover of stockinette or it irritates my skin)? At any rate, if you look over those five links and have questions about any of them, please ask, as there are lots of gals here with experience in all those areas.

    Gentle hugs,
    Binney

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  • hugz4u
    hugz4u Member Posts: 2,781
    edited March 2013

    Beachnut, On the topic of sleeves. When I wear my over the shoulder juzo with the strap to hold it up I notice that I don't get a fuller feeling in my back of arm and breast. I think a sleeve with a band around the arm sometimes pushes the fluid into my other areas. This is just from trial and error, I am not 100 percent sure but I always seem to be a wee bit pinchy in my breast nearest to the band. I wear my banded sleeve about 1-2 times a week.

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  • Beachnut
    Beachnut Member Posts: 17
    edited March 2013

    I talked with my p.t. again & she told me to quit wearing the sleeve & the glove (my arm was only slightly swollen)...she said to keep doing my massages & taking the medication my RO prescribed, etc., etc....so I'm trying very hard to not get so down about this whole thing - its hard though....xo

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  • Binney4
    Binney4 Member Posts: 8,609
    edited March 2013

    Oooh, yes, Becky!Frown The distress of these things is no small matter--all of us here are with you on that. Some of us who have been hanging around here a long time theorize that the lymph system actually has something to do physiologically with the mood swings that a flare or other LE problem causes. No research about that yet, though there are plenty of studies that show LE has a strong psychosocial impact on women who develop it. So do give yourself room and know that it gets better. Steep learning curve, but you'll soon have this under control and be able to keep it that way.
    (((((HUGS!)))))
    Binney

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  • cookiegal
    cookiegal Member Posts: 3,296
    edited March 2013

    I never had the feeling my sleeve made things worse, but breast LE is a pain.

    I have mentioned on here a number of times I use the wiggly fabric from the

    http://www.solidea.com/en/sport/shorts-silver-wave/silver-wave-abdominal-band/

    inside my compression bra and even a regular bra, it offers temorary relief, but hey I'll take it.

    I still wear undewire bras, at times I think some of them actually are better than non-underwire.

    Also some jogging reallys seemed to help, I was doing this daily, but then injured my hip.

    My DO reccomends bouncing or jiggling 5 minutes a day.

    Hope that helps. The good news is that my breast is not fibrotic.

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  • Beachnut
    Beachnut Member Posts: 17
    edited March 2013

    OMG, yes the mood swings!! Alot of my friends say, "stay positive"...etc etc...I DO try & do that, but there are times when I'm standing in front of the mirror & just want to cry at how I look and feel....I suppose I should think "well,, its just a boob", but it is painful in alot of areas & very lumpy/hard....and gosh, I am a woman and want to be attractive for my husband, ya know???  (He has been wonderful, by the way, but still its what I think)....thank you all so much for responding and being so helpful...I finally feel like I have someone I can talk to who can understand and that I am not alone...hugs back to everyone!!!

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