Tired of hurting! Breast/Truncal Lymphedema???

steelrose · May 2014

steelrose · May 2014

Hi everyone. I've been having pain in my right breast, ribs, and back for about six months. It's become pretty intense, and no pain medication seems to help. I dread bedtime, because I'm so uncomfortable laying down. The pain seems worse at night. I've had an MRI, CT scan, and bone scan that showed some edema in the back and ribs, but nothing is visible to me. I had surgery for spinal mets in 2010, followed by radiation, and a breast reduction on the right side after a lumpectomy on my left breast, also in 2010. Two or three nodes were removed. I wonder if anyone else has experienced breast or truncal lymphedema on the opposite side of the effected breast? I seem to have many of the symptoms... a burning, tingling sensation, fullness and pain in the breast, ribs, and back... of course, I feared more mets but the edema was the only thing that showed up on the scans. I think it may be time to get a referral for lymphedema? Does anything help with this pain?

Thank you for any input!

Rose.

doxie · May 2014

steelerose,

So sorry you are experiencing this on top of having mets. Yes, it is time for an LE referral.

Wearing a compression garment, even an athletic shirt has helped many of us. Depending on your size, Underarmor men's compression garments work well. You will need to go down a size to get enough compression. Some of us use Sassybax camisoles or shirts. People also buy camisoles from SPANX or other similar cheaper brand at Target or outlet stores. It takes lots of trial and error.

Doing manual lymph node massage also can help. It's more challenging for the truncal areas, especially the back. I'm sure you'll get more comments soon.

purple32 · May 2014

Hi rose

So sorry about all your troubles !

You DO need a proper eval, by a certified LE therapist : http://www.stepup-speakout.org/

LE is hard enough to DX without getting an 'expert' so try to find Lana certified IF possible.

Good news on the scan ruling out mets, but to be honest, I have truncal, and I do not experience pain. Having said that, we are all very different. I did not have radiation . I know my husband had rads 5 yrs ago and gets lots of pain his DRS said came from that ... the jury is out on your LE. You need to be seen.

In the meantime, I wear a sassybax garment that I love. It *may* help if you shop for a good fitting compression cami and try it out before your appt. I don;t think it could hurt. In the meantime, be sure to check out this site. It was created by a group of ladies from here and IMHO it is the LE bible!

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

Good Luck!

steelrose · May 2014

Thank you very much for your replies, doxie and purple! I bought a compression camisole today, and I will test it. Still not sure if I'm dealing with lymphedema or not, but time will tell. All the best to you both...

Rose.

LymphActivist · May 2014

Please have your primary physician refer you to a qualified lymphedema therapist for an evaluation, and treatment if necessary. Make sure that the therapist has "CLT" or "CLT-LANA" after their name, which means that they are certified lymphedema therapists.

Were any lymph nodes removed as part of the spinal met surgery? That may be related.

Binney4 · May 2014

Steelrose, I'm sorry about your pain--so exhausting to hurt all the time! I have truncal LE that is VERY painful--even in the past fairly disabling. The pain of truncal lymphedema doesn't respond to OTC pain meds (probably because it's actually nerve pain), and it can be very hard to pinpoint--whenever I'd try to point to the exact area where it hurt, it would seem to move around and be somewhere else.

Lymphedema can develop after ANY chest/breast surgery, even without cancer being involved at all. Breast augmentation and reduction both can lead to this complication. Any trauma can, in fact, such as an auto accident. Football players sometimes develop lymphedema from the effect of being repeatedly battered in the chest by other players. So certainly it's possible that this is lymphedema.

It CAN be effectively treated with Manual Lymph Drainage massage by a well-trained lymphedema therapist. Here's how to find one near you:
http://www.stepup-speakout.org/Finding_a_Qualified…
Any doctor on your team can write you a referral. Call therapists you're considering and ask how much experience they've had treating truncal lymphedema, as that can be a real help in deciding who to see.

It's always hard for me to "see" my truncal swelling just by eye-balling it, and it can be hard for doctors as well. I know when it's flaring because of the pain, not anything I see. Treating it myself with self-Manual Lymph Drainage and adequate compression brings it back into control and relieves the pain. One thing women sometimes do notice with truncal lymphedema is that when they take off their bra it leaves long-lasting indentations in the skin where the straps or bottom band were, so that's how some gauge whether they're dealing with truncal lymphedema or not.

I use a compression cami by WearEase called a Slimmer. It gives good coverage both across the back and under the arm. I also have a night vest made of doubled fabric stuffed with foam chips that is very effective in keeping my truncal swelling in control. When it flares I use small pads called "Swell Spots" in the area of the pain to quickly bring down the swelling. So there are a lot of resources you'll discover for keeping this under control once you get it diagnosed and treated.

Please keep us posted on what you discover, and tell us how we can help.

Gentle hugs,
Binney

AmyQ · May 2014

I get pain if my arm or back are not messaged properly and if manual drainage doesn't help, wearing my compression sleeve definitely helps. Good luck to you.

Amy

steelrose · May 2014

I appreciate all of the responses. And Binney, your posts are always so informative. I came here a couple of years ago with concerns about cording, and was greeted by your warm and helpful self. Thank you, dear lady!

Rose.

steelrose · May 2014

An update: I bought a compression camisole at the drugstore the other day to try out until I meet with the oncologist later this month. It's by Genie, not one of the recommended brands, but I figured I'd buy a Sassybax or WearEase if it helped. Well, I haven't taken it off since I bought it! I'm wearing a Genie bra underneath it too, which cuts in under the breast sometimes, and seems like overkill, but my pain is much more tolerable. And I'm wearing it to bed too! Hmmm... now I really think I might be dealing with lymphedema.

Binney4 · May 2014

Steelrose, I'm so glad you're finding some relief! Next step: a really good LE therapist. Keep us posted!

Gentle hugs,
Binney

OneBadBoob · May 2014

I am another odd one out who just loves the Genie camisole. I find it works well, is extremely comfortable, does not ride up, and gives good compression where I need it.

I believe a while back they had some problems with customer service and bad reviews on their website, and it think it turned a lot of people off.

Glad to hear it is working for you.

It is sold at Bed Bath and Beyond, and the 20% coupon helps on the price. They are great on returns if it dies not work for anyone.

carol57 · May 2014

Count me in as a fan of the Genie camisole, too. It can be a challenge to stay tucked in, but it's comfortable and gives just the right amount of compression where my truncal LE bugs me. I find that compression camisoles are great products to remove the cinch just under the breast that comes with a bra. The Genie is so affordable compared to other camis that I've bought several to keep them moving through my laundry cycle. Onebadboob--Jane-- I owe you big for posting about this in one of the threads some time ago!

slv58 · May 2014

Hi everyone, I'm starting to think I may have truncal Lymphedema. I do wear a sleeve for mild arm Lymphedema but since I started getting feeling back in my breast, I've noticed an area at the side of my breast that may be slightly swollen (hard to really tell) but is definitely sore. I'm going to have it checked out in June when I see my MO, but I'm due for my first mammo since surgery- will this make it worse? I'm already worried about the pain as just pressing on the area hurts. I can't imagine putting my sore breast between those plates! Knowing that blood pressure cuffs are a no-no for affected arms, I can't help worrying about what a mammogram would do to an affected breast?

Nettie1964 · May 2014

slv58,

I too was worried because my breast is still tender to the touch! And my surgery was on Dec 12, 2012 and I finished rads Oct 4, 2013! My tenderness did not get so bad until after rads! I saw an OT for a while and she did some massaging but it was quite painful! I also had cording but that was easily corrected for me! I was also paranoid about the mammo, but believe it or not, it was tolerable for me, not nearly as painful as when the breast is massaged or touched!

I'm beginning to wonder if the tenderness will ever go away! I go to massage weekly and when he even get's remotely close to the breast, like around collar bone and underarm, that whole area is still very painful! Just wondering if/when it will stop hurting! I also wear compression cami most of the time, but found that on these hot days, it is almost unbearable!

The other issue I have, and I had this before BC, I can NOT find a bra that does not either ride up or curl up under my breast creating extra undue pressure! Therefore, when I wear a bra, I'm always pulling at it to unroll it or pull it down!

slv58 · May 2014

Nettie, thank you for reply, it is reassuring that I'm not alone feeling this soreness a year later. I have finally found a sports bra that is comfortable and does up in the back! I hated trying to pull one over my head. I think other than this bra being wide in the band and underarm, most of why I'm finding it comfortable is that it is tight, this seems to make it comfortable.

glennie19 · May 2014

I got a Swell Spot for under the arm and the compression it gives has been really helpful in reduced the LE. It make a big difference. Now I am ordering one for the chest area too. Compression really seems to help and it's not always easy to get it where you need it when you have truncal. The under armour compression shirts are too big for me to use.

Here's a link to the Swell Spots so you can see what they look like. http://solarismed.com/products/swell-spots/112-sw...

I echo the other ladies: Find a certified LE therapist to help you out.

Binney4 · May 2014

glennie, I too use Swell Spots for relief in specific areas. The Kimbe Spot is my favorite. It fits nicely in the axilla and addresses the swelling I have just in front of and behind that area. But I clicked on your link anyway and was looking through the list of them and found this sentence in the description of the Thora-Thigh Spot (emphasis mine):

"The Thora-Thigh...works wonders on radiation fibrosis and disperses the ending pressure of bandages or leg garments."

I believe the "ending pressure" refers to the top of the leg garment or bandage wrap, and since I (and others here) have a lot of trouble with that area on my arm sleeves causing truncal pain when it's too tight, I emailed them and asked if they had anything that would work to ease the "ending pressure" on our sleeves. Something discreet and not too thick that we could tuck into the top of our bandages or garments to better distribute the pressure in that area. I'll let you know what they say.

Be well,
Binney

carol57 · May 2014

Nettie, I hate that rolling up under the bra too. I wear a cami with built in cups, and it does a great job of pulling down just enough to spread out the cinch effect. I have several brands and it took some trial and error to find what fits well and feels good. It's hot in summer, though.

KS1 · May 2014

My drawer is filled with discarded compression camisoles & shirts, bras, boleros, breast binders, athletic compression shirts and all kinds of stuff I would stick in them. None really worked, and I have found that wearing a bra or camisole or anything that doesn't completely cover the axilla and upper arm makes my arm and side hurt more, so I go braless/camisole-less. About a year ago I discovered that if I sleep on my non-affected side on a pillow and wedge (between 30-45 degree incline), my side feels a better ... not perfect ... but not so uncomfortable that it is a constant distraction. If you haven't tried sleeping on an incline, it might be worth a shot.

I don't want to jinx things, but today, my (new) therapist did a trial of the flexitouch pump (arm, chest and trunk portion) and I feel better than I have since I had surgery 5 years ago. My side doesn't ache, my arm feels light as a feather, my fingers are pink even though I've been wearing a glove for 10 hours, and I can raise my arm up high. My nagging upper back/scapula pain is gone and I have delicious droopy hanging skin on my back. Has anyone else found that the flexitouch has helped with their trunk/breast/back issues when MLD hasn't? KS1

steelrose · May 2014

My oncologist isn't convinced I'm dealing with lymphedema, although it certainly feels like it. She ordered an ultrasound to check out the breasts (she says an ultrasound can detect lymphedema too?). I refused a mammo because I hurt too much. The camisole continues to help, although I had a bad flare-up last night. No pain meds touch this pain! I did try to sleep on an incline the other night, and it seemed to help. Thank you, KS1!

icemasterqueen · December 2014

Hello Binney,

Can you tell me how to keep the swell spots in place in the underarm? I have truncal, underarm, and arm lymphedema. Too much pressure with the garment increases my neuropathic pain, but if not enough pressure, my lymphedema increases and I feel a different kind of pain. Can you explain the type of night time garment you use? ie. brand? I find pressure with padding is comfortable for a while. I also have a one piece custom garment for my whole torso and arm that works well for lymphedema but makes the nerves worst.

Thank you too Binney for sharing your experiences through the years. I found your post 1/2 year ago on my journey following bilateral mastectomy, prophylatic on left. I had a hematoma, seroma, reopening of wound on prophylatic side - now hypertrophic scarring, cording, lymphedema, and neuropathic pain. My neuropathic symptoms decreased tremendously when I stopped working one month ago. I needed a break as it was exhausting to be in pain all the time.

I recently went to a Naturopath who used a Bioharmonic Generator that set the vibrational frequency of square waves to stimulate my lymph glands, and it moved all my body lymph. The entire body was literally flat without any fluid or thick muddy deposits. The huge bump in my underarm was also gone. However, the movement of the lymph drove my nerves crazy and I stopped after 5 treatments. - This modality was expensive, and it is not recommended for those with active cancer, and from my experience, those with neuropathic pain.

Binney4 · December 2014

Hello, icemaster,

You've certainly had a rough go of it, and I'm so sorry! It's frustrating to have to stop working, but for sure pain is both exhausting and debilitating. So I'm really glad to hear that has been some better lately.

I use a WearEase camisole called a Slimmer to hold the Swell Spot in place under my arm. It's not foolproof, but it works well enough. Like you, when I'm dealing with pain I find the padding of a Swell Spot helps it for a while only. Then I have to switch it out for another kind of "padding." I have a Kimbe Swell Spot from Solaris and a chest/side pad from JoviPak, as well as a stockinette-covered Medi Lymphpad (cut into a longish rectangle), and I switch out among them as needed.

Here's the Medi, in case you're not familiar with them:

http://mediusa.com/product/view/257/Finely+Napped+...

I've had both Solaris and JoviPak night garments, which are the foam-stuffed sort, as well as a Velcro sort made by Circaid called Juxtafit. I like the Solaris best, but we're all different. They're hot in summer, and the foam-stuffed ones can be pre-chilled in the refrigerator, which makes getting to sleep easier. In winter, of course, they're more comfortable--just bulky. A lot of LE therapists don't like putting zippers in them (I'm not sure why), but I find the zippers make donning and doffing so much easier that it's well worth it. Solaris will put a full-lengh zipper in a sleeve/glove; Jovi only provides a zipper for upper arm OR the lower arm. Again, I have no clue why that is. As far as neuropathic pain is concerned, foam-stuffed night garments are WAY more comfortable than day garments, so there's hope out there!

Basically it's a trial-and-error process to find what works best for YOU. Not easy, but there are so many choices now that we all have a better chance of finding garments that really work for us.

Have you gotten PT help with the neuropathic pain? Mine improved considerably with a slow desensitization process. It's worth pursuing, anyway. None of this is easy, that's for sure, but I'm looking forward with you to some real relief and answers!

Please keep us posted. Gentle hugs,
Binney

glennie19 · December 2014

icemaster, My LE is across my mastectomy scar and in the armpit area by where the nodes were removed. I have had luck with using a breast binder from EAB Medical to hold the swell spot in place. It's not perfect, but it covers most of the areas I need. I use the LINED ones http://www.eabmedical.com/product_info.php?products_id=38&osCsid=q55k35pdeagotjivh11r8tbjq4

Chloesmom · December 2014

newbie with need for advice here.

My BMX was Friday and I had 2nd surgery 14 hours later for huge hematoma that started at sternum and wrapped around side of rib cage. The surgery fixed that but now that I'm home I have a big pocket of swelling from armpit to about 5 inches below on the side of my ribcage. It doesn't hurt like the hematoma but it feels stretched. When I hug myself with the other hand it feels good.

I have been sleeping in a recliner with my arms elevated on pillow so my arm is ok Have tried to wrap it with some compression fabric which seems to make it feel better but now it spills over the top at arm pit.

They gave me a surgical bra at the hospital but it's not for compression. It was worthless as it just dug into the incisions Don't have anything to hold up now so what's the point. I'm just wearing a soft cami.

The visiting nurse is coming as I had been leaking around the drain site. Just wondered if there were any words of wisdom from you all. SO grateful for how advice had helped me get through the last 2 weeks

Binney4 · December 2014

Chloesmom, I hope you're able to get some rest with all this going on! Really glad the visiting nurse will be there soon to help you make a plan that will bring all this swelling to an end. It's not clear that what you're experiencing is lymphedema, though it might be. Especially given the leakage at the drain site, this could be a seroma, which might be helped by simple draining. (Lymphedema can't be "drained," since it's fluid that's in among the cells rather than pooled like a hematoma or seroma). Good for you for keeping your arm elevated--do continue with that as you're able. A soft cami sounds about perfect for now, and I hope it's giving you enough support to relieve the heaviness and discomfort.

Be well! And please keep us posted,
Binney

Chloesmom · December 2014

Thanks Binney! The nurse said it looks like a seroma. I put a compression wrap on it and it feels much better. Hopefully it won't have to get drained. The drain site stopped leaking at last! The nurse said things are looking better. The BS will see me tomorrow if it's not better. He called me later today and was most attentive. I've had the best care and feel so much better after the nurse was able to check it out. Back in the recliner for another night with all my pillows. My poor little dog doesn't understand why I'm not in bed with her snuggled by my knees. This BC stuff even stresses our pets

glennie19 · December 2014

Glad that the nurse came to see you. Hopefully it won't have to get drained, but if so,, it's not bad. I had to get drained 3 times. Didn't hurt. Sounds like you are doing good with keeping arms elevated. Your poor little dog. Hopefully you'll be back in your bed soon.

Tired of hurting! Breast/Truncal Lymphedema???

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