Breast Lymphedema

I have an appointment in 10 days with a very busy LE therapist. I am hopeful we can get this under control and get it back down to normal. It is about a full cup size larger than the other.

Nancy, itching can be an early indication of infection, and with LE that's a serious issue. Please be very vigilant and don't hesitate to get help quickly.
http://www.stepup-speakout.org/Emergencies_and_Medical_Care_lymphedema.htm

Unfortunately, LE can seem easy to underestimate, and too often our healthcare providers also give us the sense that it's a minor issue. But it's the sort of thing that can turn around and bite you. Please make room in your life for the best of care now, so your "back to near-normal" future can become a reality.

Be well!
Binney

I wanted to come back here to say thank you, espcially to Kira. I had my final physical therapist appointment this week. The cording is finally gone. I have gone pass the fear of getting lymphedema. I am able to do everything I did before having the nodes removed.

What helped me is learning how to do lymph drainage, and the exercises my pt gave me. I recommend everyone having nodes out to see a oncologist pt asap. Prevention is key.

I also have LE in my breast and at times a great deal of pain.  It took many months until it resolved and I went through the entire winter with no problems, but the first day in the mid-80s and there it was, rearing it's ugly little nipple!  I know what to do because of the LE therapist I see on my own dime every three weeks, but she's been working on it a lot during our appt. and it's finally starting to feel better.  She recommended no compression at all on it, so I stopped wearing bras entirely and it feels so much better.  I have a stick on bra (25 wearings, around $30) which I use for public outings that matter.  Otherwise, I'm mostly in pasties which makes me feel naughty.  I'm a D, so yep, the girls hang low but who the heck cares.  And yes indeedy, you can definitely see the difference in size from my good breast and the lumpectomy one.  Again, who the heck cares.  That same Chikly therapist tells me when I'm sitting in a chair relaxing to jiggle that boob gently every now and again.  I still have some swelling but very little pain.  Jiggle away, ladies.

I've been dealing with a truncal LE flare this week that's gotten quite bad today -- to the point that it's hard to take a deep breath without pain on my right (mast) side.  I'm slim, and while the exterior swelling is obvious to me, it isn't all that dramatic.  So I have two questions.  My DH has insisted that I ice the area, which I've been doing all morning.  It's actually been some help, especially on my back, but hasn't helped the pain when I try to take a deep breath.  And I can't find anything anywhere about icing or cold packs.  Does anyone else do this, and do you think it's a good idea?

I'm also curious if anyone else has experienced truncal LE that actually makes it painful to take a deep breath.  I can't help my mind from going to other possibilities and fears because this is the first time I've noticed that particular SE.  Usually it's just swelling and typical LE tingling-pain, so I'm hoping someone can ease my mind.   Deanna 

Binney and kira about two weeks ago could now be three--------My problem first has been left breast swelling/axillary/upper innerarm and sometimes axillary swelling on the non LNd side for 2 1/4 years. All swelling was associated with using the arms and worse in the morning even if i would wear a bra to bed. 2-3 weeks ago I slept with head of the bed up and legs up because of back pain(electric/vibrating bed-treat from years ago). Never thought to use it for LE swelling. The next morning was nirivahna -almost. There was not complete resolution, but it is the best in 2 1/4 years, I'll take that. It was good for the back for a few days , then the back decided no. So, I have to alternate to make back happy and LE happy.  But it is better than no relief for either.  I did find the BRA site and they somewhat confirmed what I had experienced for two days at that time.  My theory on the type of LE I have is the foobs were falling/ migrating into the axilla at night. Even though I would try to not sleep on my back. With the elevation of the head/back. it caused just enough downward fall of the foobs that they didn't restrict venous flow or lymph flow in the axillary region. I may have written this in the last 2 -3 weeks , but I also have memory issues  bnecause of brain problems LOL. so I could have written this yesterday. I won't go check that would be to demoralizing. It's like 50 first dates.

Deanna, the problem with ice is that when it attracts swelling and our lymph system is compromised, it gets "stuck" and can't resolve itself. Cool is fine; cold is not.

Are you asking if deodorant exacerbates LE? I've never heard that. Hopefully others will come along with their experiences. Since bc treatment I've used a crystal-type deodorant, but I know that's not effective for everyone. Hopefully others will be along with their experiences.

SAS, how does your back feel about raising only your upper body, not your legs? That is actually sometimes recommended for arm LE, even without the truncal LE, but I've never tried it. Hmmmm! Verrrrrrry interesting!

Be well,
Binney

since the rads.i have not used any deoderant under that arm.just the emu oil that i use everyday for underarm and breast....i do use a natural deoderant under the other arm tho....cannot believe that rads took away that stink!!!!!!!just wondering what else it took besides my sanity.....

graduated from the long line compression bra that looked like a harness to a champion sports bra....maybe next will be something that looks more like a bra.swelling is down now so im feelin good.

huggggggggggggggs everyone K

Binney missed your question on positioning. When the back is up, I have to have the legs up some, otherwise I slip down. Pretty well decided that I have to where a bra most of time ----foobs --especially left falls right into axilla. Feels like a base ball in the pit. One of the first things on day one dicussing with PS about surgery, Was that I did NOT want to wear a bra again------- So, what does he do as a final fill on the table ---850cc----the max allowed. Son of a an ugly roach. He knew I had a previous surgeon, go against my wishes in 1980 for an augmentation.  I mentioned it again on surgery day. So, this son of an ugly roach, completely went against my wishes on all accounts. So, Augmentation to BMX discomfort always. Now discomfort always. We discussed in last office visit options, if I was uncomfortable, and he says we take them out , but won't be able to repair any sagginess. Did I get a lemon PS or what.

BTWI was trying to think what I could call him, without getting reported. Never used "son of an ugly roach" before. Works well I think.

Hi to all you beautiful ladies ... and thank you for all your posts.

I'm 60 yrs. young,  and 7 mos. out from lumpectomy; 3 mos. out from RAD.  I had several seroma aspirations, cording and ended up with lymphedema only in the breast.  I continue to have pain from armpit down the underside of my arm.  I've had PT and am using a "flexi-touch" trunk/arm compression pump a few times a week.   I have a Belisse compression bra for flying, and several compression sleeves (as a precaution) when I'm doing physical activities.  

My biggest frustration is it seems my entire team of doctors think I'm over-reacting.   As a result I have a difficult time talking to any of them without crying.  I just want to say, "would somebody just listen to me, I'm really not a crybaby.  I'm in pain here and I don't know what to do"    But of course, when I'm saying it with tears, they seem to resort back to "hmm ... looks like a crybaby to me"     I have my 6 month check up with my surgeon tomorrow and today all I can do is cry.  I came on to this site to give me some strength and courage.   I want to know if I can do aerobics, if I can golf, if I can pull weeds in my garden ... I have done all these and the next day I'm in pain.  Which of these is the problem ?  Do I continue, do I stop ?   Are any of these going to make the lymphedema worse ?    I feel like the doctors look at me and are thinking "what's the problem girl, we got the cancer didn't we ??"    

Mart, truncal lymphedema hurts, as does breast LE. You already have a flexitouch?

We have a page on stepupspeakout for doctors, here's a link--and it mentions pain

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

Here's the link to breast/trunck LE:

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

Being in pain does not make you a "crybaby"--it makes you someone who needs to be treated.

I work in radiation oncology, and the head rad onc recommends that no surgery be even considered on the radiated breast for a year, as healing can be very difficult, and the natural history of breast lymphedema is to improve, with treatment.

I suggest you continue to exercise, paying attention to your body and wearing appropriate compression. The key is slow and steady, and no exhaustion or overuse of the area.

Hang in there.

Kira

Ladies,

I could not imagine anything like this existed and am so happy I found this post!!!  I read many of your posts and finally realize I am not alone. I hope in time we all find relief....

  I am experiencing so much pain in my right breast I want to either scream or cry..... I had my lumpectomy in Feb 2010 and finished rads almost 1 year ago.... With the help of my LT we have been able to get my arm swelling under control. but cannot with the breast. It is always swollen, have cording into the breast from under my armpit and pain that at times make me want to jump out of my skin.  Since May I am seeing the LT as self pay. Initially every few weeks, now every 7 -10 days b/c of the swelling and pain.   I do daily massage and attempt drainage but cannot get the same type of relief I get from the LT.  Insurance covered me initially but since my arm was under control and I could do most daily activities discharged me.   I had my ultrasound in Aug (which was negative for cancer yay) but confirmed I have fluid buildup at the scar.... The nurse practioner in the BS office told me this was expected. Also told me to use warm compresses for treating the cording. This goes against what the LT recommends. I am sort of at a loss. The LT wants me to get a new prescription and go back on a more frequent treatment plan. Not sure who to ask for the prescription.  The B/S didn't recommend the initial treatment and does not seem to be a big fan of post surgical therapies.  I am thinking maybe I would ask the oncologist b/c she knows I also have fluid retention from the meds.... Not sure, trying to figure this all out. 

Also,  I am fairly large boobed and most bras drive me crzy. I tried one compression bra was fitted at the surgical store but the arm straps are  too tight and the velcro makes my skin irritated. I may need suggestions for another bra.  I heard about the Belisse bra. It's expensive but I thought It might be worth a try.... 

Any thoughts on how to obtain the script or compression bra types would be helpful.....

Best to all of you,

Barbara 

  

Hello, Binney,

Thank you for posting the link with breast compression product suggestions and reviews. I notice that several reviews point out that a particular product isn't likely to provide adequate compression for airplane flights.  I need support to wear while flying; had bilateral mx/diep and am swelling throughout the foobs and midriff from time to time.  Can't find rhyme nor reason to what triggers it, and a night's sleep always resolves it, so not sure if it's truncal LE or just post-surgical temporary (I'm 10 weeks out). Work has me flying quite a bit, and I noticed much more swelling during last week's flights-first time back to flying since surgery. How can I tell from product descriptions, if a bra, cami, etc. gives adequate compression for flying?  Thanks so much.  I really appreciate your detailed comments on this and other topics.  --Carol

Thanks, Binney! 

I have a short list of qualified therapists already, just waiting to see how the discussion goes when I see my plastic surgeon for a check-up next week. He's a real listener and I feel confident that if I ask, he'll make the appropriate referral.

I was kinda hopin' that waking up less swollen meant it might not be LE, because I had thought that trunk elevation helped drain things, and therefore if lying flat all night didn't make it worse, it might be another cause.  Sigh...wistful and not-too-clear thinking on my part! 

I live in a rural area and will be driving about an hour to see any qualified therapist within reach. If an evaluation suggests I need therapy, should I expect to see the therapist several times each week?  Just wondering.  What I am feeling is modestly bothersome, not horrid, but I sure would like to work on keeping it from getting worse. 

Thanks for your valued input. 

Carol

Binney,

The little voice in the back of my head has been speaking to me about acknowledging the risk (or fact) of having lymphedema.  Just this morning I started working on bringing Cathy Bryan into our area to put on her PALS for Life workshop for area personal trainers, because I just know I want my own trainer to be as knowledgeable as possible when I re-start my strength-training program. Was expecting to get permission for that in about another month.  Double-sigh...hope I don't have to postpone that for a good while. My surgery was all prophylactic and I was really hoping to march onward with no regrets for my decision.  Anyway, you get a WOW for all the clear and well informed information, and especially your gift of time, given in this forum.

Carol