breast is larger after lumpectomy - lymphedema?

fac03

I had lumpectomy with 12 lymph nodes removed on 11/11 and began radiation on 01/09.

I have physical therapy. My PT measured my arm and said that the upper arm is about an inch bigger, she also helped to drain the fluid, I am not too worry, but when I applied cream to my breast, I noticed it is significantly larger, is it possible that the fluid accumulated on the breast because of lymphedema?

MinusTwo

fac - yes it's possible to have breast & truncal LE. I wear a compression bra every day to keep it under control. I hope your PT is certified & LE trained. Below is a link that may be useful.

https://www.stepup-speakout.org/

tw1212

I had a lumpectomy on my left breast and my left sentinel node removed in 2015. First, my breast shriveled up around the scar after the surgery. Then it swelled up after my 6 week radiation treatments I guess from healing itself. But over the years it got so noticeable smaller than my right breast to the point that I had to make my own prosthetic insert to wear inside my bra.

fac03

MinusTwo,

thanks for the link, I made an appointment with my surgeon and will print a few pages to show her.

I looked into the website and was not able to find out how to order a compression bra. I will discuss with her.

My PT is LE trained, my surgeon recommended her and she only does LE. But from what I found out, I think "LE trained" was just going for training for a few days and they had to read ahead of the class and had to take an exam.

tw1212,

I will see whether I have the same problem.

MinusTwo

fac - if she's trained at all, she should be able to measure & recommend outlets in your area for compression gear.

I love Wear Ease. I use the Sydney Bra, but there are lots of other options. You can click on products to see more. They are wonderful on the phone to help figure out what you might need. Also most big cities have medical supply stores.

https://www.wearease.com/products/sydney-bra?varia...

MinusTwo

tw1212 - radiation can cause LE but it sounds like your muscles have pulled everything up tight. Did your doc look at it?

fac03

MinusTwo,

thanks for the link. I have been looking for bra (not necessary compression) for so long. I am going to give them a call tomorrow.

MsPrecious

Hi,

Please I'm new here. I'm 5 months post lumpectomy and 10 weeks post radiation. I noticed breast swelling with extension to the axilla last week though not much. I was told that the beeasr will shrink a little bit after radiation but i didn't see that. To change position at night while sleeping was painful. My radiation oncologist put in referral to physical therapy and lymphedema therapy 2 days ago but they are yet to call me. I went back this morning with pain and heaviness on the affected chest and limb, I was still told to wait for them to call me. I don't want this swelling and pain to progress. Please what do i do? I checked some lymphedema videos on YouTube but I don't know if I'm doing it the right away since it's not been done on me before. I don't know when the therapists will call me. Even at this moment, I feel pain in the palm of my hand. I need help on what to do while waiting for them to give me an appointment. Thank you.

MinusTwo

MsPrecious - you need to get your RO involved. Likely they can push for faster contact.

fac03

I met with my surgeon today, she didn't think it is related to surgery but that it is related to radiation. The swelling will continue. I just hope it won't be too bad. I will try a compression bra and see what happens.

MsPrecious,

can you get the PT's number and call the PT yourself?

MsPrecious

Thank you. I was with the scheduler today and was told the therapists are busy but once they get back to them, they will call me to schedule the time. Hopefully, they will call me tomorrow. Meanwhile I was able to get a compression bra, glove and for the arm today. I walked in and was measured. I'll use this until the therapists have time for me. I appreciate the help.

MsPrecious

The appointment I was given is January 29th. I'm still trying to make some calls to see if I can get a lymphedema center in another health system that can see me sooner.

Please can anyone send a YouTube link of an effective lymphedema exercise video and manual lymphatic drainage video that I can do to relieve the pain and swelling before I get to see the LE therapist? I got a bra, compression sleeve and glove which I wear round the clock. My left thumb has almost doubled in size of what it used to be now and a pant I wore recently that I try to put on 2 days ago is tight, not because of weight (I cut down on food and try to be more active) but I guess it's abdominal LE. The rate of the LE progression is alarming and if I don't do anything before my appointment, I don't know how I am going to tolerate the pain and swelling. I couldnt sleep again yesterday due to pain.

MinusTwo

It's kind of difficult to start MLD without being trained, as you might aggravate the condition more than help it. Still - take a look at this site and see if there are any interim ideas. And keep bugging them to try to get in earlier if there is a cancellation. But do make sure you're going to someone who is certified & trained. If the swelling is that advanced, surely even your PCP would recognize and maybe push something sooner. Sorry you're going through this.

https://www.stepup-speakout.org/

Binney4

MsPrecious, here are some suggestions of what you can do while waiting:

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

The compression bra may be alright to wear 24/7, but the sleeve and glove you were issued are no doubt day compression--they depend on muscle movement to help them move lymph fluid, and since you're not active at night that won't help as much as during the day. Also, day use garments can shift when you're asleep and actually cut off lymph flow, which is why they're not recommended for night use. Elevation of your arm at night on pillows is a better way to go until you can see a good therapist.

You're wise to be concerned and seek help quickly, but please know that even a wait of a couple of weeks will not do permanent damage, and with good therapy you'll see progress quickly. In the meantime, if pain (and anxiety!) are keeping you awake, do ask your doctor for help with that, as pain can increase the flow of lymph fluid to the affected areas, and you definitely don't want that.

Looking forward with you to quick help! Gentle hugs,
Binney

MsPrecious

Thank you so much. I was able to push until they gave me another date. I'll be seeing the LE in four days. Thanks for the advice and the helpful links.

fac03

MsPrecious,

this page has some suggested exercises.

Some of them, such as the wall walk and door stretch, are suggested by my PT as well.

https://community.breastcancer.org/forum/70/topics...

dajoway

Hello,

I, too, have breast lymphedema after a R breast lumpectomy on July 25, 2019. I knew about lymphedema, but no one had ever told me that it could occur in the breast. I went to a physical therapist who showed me and my husband how to do the massage technique, but it really seems to be a slow process. I think it has gotten better, but my MO told me that it may never get back to normal! If I had known that, I think I would’ve had a mastectomy.

I also have not ever been told about a compression bra. I think I will look into it!

MinusTwo

dajoway - unfortunately you can get lymphadema anytime the lymph system is disturbed. It's actually more common with a mastectomy than a lumpectomy. But it can be just from a SNB - sentinal node biopsy. Radiation can also cause it.

Glad you have an LE PT teaching your manual lymph drainage. There are a number of other ways to move the fluid. Do read the links above on 1/17 for 'step up speak out' so you can see other areas of risk - some even as small a getting scratched by rose thorns. The risk will be there for the rest of your life so it's good to learn about it and tips to prevent problems.

If you look at my post on 1/13, you can see a link for the compression bra from Wear Ease that I use.

MsPrecious

I saw LE therapist and I asked when do I stop wearing compression sleeve and glove, she said it's for life. She said usually when someone develops lymphedema post breast cancer treatment, the size of the limb cannot go back to the pretreatment size. I find this hard to believe because it's early stage. The upper arm close to the armpit is about 1.5 (don't know if it was inches she measured) bigger than the right side. She said it's normal if it's just 1 unit or less difference.

Please can you share your experience?

MinusTwo

MsPrecious - yup, it's for life. However it's been my experience that the swelling can go down with treatment. I've extra vigilant with sleeves gloves & MLD - because I don't want my LE to progress. Some women have to have night garments and some use a FlexiTouch pump. Hoping yours will not progress. While I do wear a compression bra 24/7, I only wear sleeves & gauntlets to fly or for other repetitive activities. But I am super careful around rose bush thorns or mosquitos and don't let anyone draw blood from my arms or take blood pressure on the arm most effected.

MsPrecious

Thank you Minus Two.

Please I noticed most of the compression garments are sold by retailers. Like juzo for example, is it possible to get a very good compression garments on my own?. The only juzo retailers close to me is in the hospital that I use. I have just one bra (amoena bra - patricia) because the hospital had just one left when I went there. I checked the price in Amazon, it's $97. Please can you post other bra sites that are equally good that I can buy from and also other compression garments too. My phone blocked the belisse bra site that was posted in another discussion topic.

Thank you so much.

MinusTwo

Personally, I don't think you should buy the first one on your own. If you google compression bras with your City name and;or mastectomy bras, you should get a medical provider who can do a professional fitting. You don't need to buy them there, but you should have a professional fitting experiences. Because they are expensive, I would not buy anything the first time w/o being professionally fitted.

Here's one of the sites that sells Belisse

https://www.lymphedemaproducts.com/products/bellis...

Here's a YouTube for Wear Ease

Here's a link for Amoena

https://www.amoena.com/global/your-lifestyle/compr...

and here's a link for Marena

https://recovery.marena.com/collections/bras

MyBestFriends

I too am having difficulty with breast swelling after lumpectomy. Right after surgery I had terrible bruising all the way down my torso. I am 3 weeks post surgery and the swelling of my breast did not get bad until week 2. Bruising is subsiding. My right breast looks and feels huge! I am very uncomfortable now and continue to wear a compression bra plus the surgical wrap every day, all day and just started taking it off at night. I had my first appointment with the Radiation Oncologist last week and will get started with my 5 weeks of radiation next week. I understand I can expect more swelling with radiation. He suggested I massage my breast. It was the first time I had heard of that! He explained that the fluid and blood within the breast will gel. I would have been massaging it all along if I had known. I am wondering if I should ask for a referral from him about a therapist who can demonstrate exactly what I can do to help alleviate the discomfort and swelling from the lumpectomy. I am concerned that once radiation starts I will not be able to massage my breast. My surgeon said breast swelling will last at least 2 months and may be more. Has anyone else gone to a therapist to learn exactly how to help mitigate the uncomfortable swelling?

MinusTwo

Some docs push massage. Others say never massage - particularly with implants. It's pretty normal to have swelling at 3 weeks. There was lots of 'insult' to the tissues & body. Glad that your doc confirmed up to 8-9 weeks.

Swelling related to surgery & inflation or radiation may just be part of healing and not related to LE. However if you're going to see a PT, might as well ask for a trained, certified Lymphadema PT who can do measurements and follow you along.

MsPrecious

I had drains on for about 3-4 weeks after surgery which was draining the fluids. Probably MyBestFriends was taken off drains early. What she described doesn't look like lymphedema, it may be some collections within the breast tissue as supposed to lymph. Please see your breast surgeon as soon as possible. Massaging fluid collection that isn't lymph can be painful.

MsPrecious

MinusTwo, please do I have to elevate my arm and forearm every time even with compression garments on? Even while driving, I raise my arm up and at night, it's discomforting.

MinusTwo

Ms Precious - I was never told to elevate continually. You should however 'pump' the arm up regularly every once in awhile. Like straight up and clench your fist several times.

I don't wear 'night compression', but I know it is different than day sleeves. I don't think sleeves are recommended at night. That said - I have breast & truncal LE and have managed to keep it from progressing to my arms/hands so I'm probably not the best guide.

ctmbsikia

I am almost 2 YEARS post lumpectomy and I have to just accept that my left breast will just never be the same. Fortunately, I do not have LE but as Minus2 says there is so much that goes on when they start messing around with your breast tissue. I really, really wish I had joined here for surgery and learned how to properly care for myself. I did well until week 3, then by not wearing enough support (this is the part I missed) Boom -seroma right at the time of my post op and radiation planning appts. Compression helped and I was told it's was OK to go ahead with radiation. Today, I'm not so sure. The fluid resolved after 4-5 months but left a mark (hard skin/scar tissue) I just had a biopsy and was found to have fat necrosis. Reading up on this thankfully benign condition it can happen after surgery, radiation, and injury. I've had all 3, so which is it? LOL

Our bodies are amazing at times, but at other times you just want them to heal and it's discouraging when you can't get back to 100%. Last week a few nights after the biopsy, I slept some on my left side. It was not a good idea. I could almost feel the fluid on that side of breast and all the way down my left arm to my fingers. I've never heard of anyone getting LE from a biopsy. I took Advil for 3 days straight and stayed on my back or right side at night. Doing whatever I can to get the inflammation process under control. I believe I will be much better this week! I will always have to take better care of that side of my body for the rest of my life too.

I really and truly feel for those of you with this condition. It sucks, and I wish you well with management.

MsPrecious

Thank you ctmbsikia.

Please MinusTwo, when you said truncal LE, did you mean upper abdomen (above belly button) and how have you been able to manage it such that the arm is spared? My upper back looks full as well as my upper abdomen. please what other compression garment can help with that?

Thank you.

MinusTwo

Ms Precious - I don't know the technical definition but I went to "Dr Google, and this is that LymphNotes said. I have no idea is this is a reputable site but just this one post looks OK. I'm assuming truncal LE goes down past the belly button to the groin since that's where I was taught to direct the fluid in MLD.

http://www.lymphnotes.com/article.php/id/461/

And here's that Step Up Speak out says.

https://stepup-speakout.org/breast_chest_trunckal_...

I was originally diagnosed with only breast & truncal LE. I have been super vigilent (maybe over the top obsessive compulsive) about not allowing any BP or sticks, and watching & immediately treating any possible injury - as small as a mosquito bite or a rose thorn prick. That said - like breast cancer itself- I think it's 95% luck if it moves to your arms even with all the care.

MsPrecious

I have been seeing LE therapist twice a week for about 2 weeks now and she takes measurements once a week. The measurements are going down except the upper chest region. The amoena bra doesn't extend to that area since it has to curve to meet the cup of the other side to form a 'U' at the zipper. Please does anyone have suggestion on any compression garment that can help the upper chest area? She mentioned kinesio tape this week which I don't mind even though my skin became very sensitive to adhesives with chemotherapy but if the tape will do the job, I don't mind. I checked some compression camisole but I still saw that the same upper chest area which is exposed with the bra is still exposed on the camisole

I saw "solaris swell spot: full bra" on a website but no reviews. It says it's ideal for hard to decongest areas as it is tucked into sports bras with front openings. Please I need suggestions. Thank you.