New Axillary Cording > 6 months postop. Anyone else?

Omaz

I hope it gets better toomuch - ((((hugs, gently))))

lago

Omaz the fingers are getting better. Don't hurt as much. They still have a ways to go but I think they have started to grow out. I pretty sure that one that blew up a month ago now has a nail growing underneath it. The top nail hasn't fallen off yet. My toenails seem to be doing nothing. I think they all of a sudden stopped growing.

I do feel that once the fingers nail beds heal that this LE might go away for a bit. 

christine47

toomuch,

have you googled MONDORS?  Interesting that they say it is rare at multiple sites.  I do not have LE yet.  Do you have truncal edema?  I do not, and have not seen therapist, do you massage your abdominal area?  Has your therapist recommended heat on this area??  Do you stetch your stomach muscles?  Do you have implants?  Not sure what I should be doing, or if I need to see LE therapist.

kira66715

Toomuch, It's my understanding that Mondor's is rare, and truncal cords are not. They look similar, but Mondors is a phlebitic vein, while cords are clotted lymphatics.

I personally think that the cords from the breast are mostly going to be lymphatics and rarely Mondors.

The treatment of truncal/breast/abdominal cords is gentle stretching of the cords. 

Kira

toomuch

Thanks to everyone for responding to my posts on this thread. I guess I have no idea if I have truncal cords or Mondors. I hope that my appointment with Dr. Francis can help sort it all out.

 Christine-I do have truncal LE on both my lumpectomy breast and on my side extending down from my AND drain site. I do manual lympatic drainage (MLD) including my abdominal area twice a day! I wear a compression cami made by WearEase (the slimmer model) which I find incredibly comfortable. I do not apply heat to any of my LE areas because heat increases blood flow and increased blood flow can cause worsening of LE. I do stretch all my cords using gentle stretching exercises.

Here is a link to a thread that talks about gentle LE stretching exercises that Kira posted. I found this site incredibly helpful.

 http://community.breastcancer.org/forum/64/topic/763052?page=1#idx_7

Omaz

Hi - I just wanted to share that my cords are getting less painful and I can stretch my arm upwards more!!  Weating my longer sleeve all day also helps with the LE in my forearm.  Thanks again to you all for helping me when things were so difficult.  I am so happy to see improvement with my arm and I hope it continues (really really do!), in other words I hope I don't do something to set myslef back!

kira66715

Omaz, thanks for the update. I'm so glad you're doing well, and if for any reason there's a bump in the road, you didn't cause it and now you know how to help it get better.

Hey, I'm the one who tripped on a cement stairway in the dark and broke my LE hand--talk about smashing the wrong hand and screwing yourself up. And it's all my fault for being a klutz (Or do accidents happen and blame isn't helpful?). But, it's a whole lot better now.

Kira

toomuch

OMAZ & KIRA - glad that you're both doing better. My LE therapist started seeing me again on Wed. She can't believe the number of cords I have. The origin of each can be traced back to the area of my breast that had the radiation boost. It's really hard in that area. She thinks that compression is good for cords too so I'm back to being wrapped all day, stretching each night. It's starting to feel better after just 3 sessions. I hope that it continues to improve.Is hoping that they eventuaally disappear, hoping for too much?

kira66715

Toomuch--not hoping for too much--I found they either disappeared completely, or kind of became sub-clinical--a tiny piano wire that I couldn't feel, but would re-appear if if I overdid it.

Hoping that you make rapid improvement and it never, ever bothers you again.

That darn boost--where I work it's either electrons or photons and around 900 to 1000 cGy in 5 days. I just read the radiation prescription: I don't prescribe it or even fully understand it..... Just see what it does to people.

Kira

Omaz

Kira - I had photon boosts, 3 fields, 7 of them 2 gray each I think.  My rad onc thinks that my post-surgery cellutitis at the sentinel node biopsy site probably made me more suseptible to the LE/cording.

toomuch

KIRA - still hoping but getting down. After 2 weeks of therapy - the cords seem to be lessening in my arm. But I have 2 that extend onto the dorsum of my hand. My LE therapist has never seen them extend beyond the wrist before. To top that off, now I have LE in my hand. I find it so much more bothersome then in my arm. It extends to my PIP in my ring finger so good-bye rings  (my left hand.) I can get in under good control with wrapping at night but on the days I work my gauntlet (too difficult to wear a glove at work) is off more then it's on because of my constant need to wash my hands and my hand feels like a balloon by the time I head home.

The radiation boost really bummed me out because I'm having a bilat mastectomy with reconstruction in August and already had it scheduled at the time I had radiation. I begged my RO to skip the boost but she said that if something came up and I didn't have the mastectomy, my radiation would be inadequate and wanted the job to be compete in the event that I changed my mind. My boost was electron, 1 field for 5 days.

The mastectomy is another worry...will the LE get worse? These decisions are so hard...

Omaz

toomuch - I am so sorry to hear that it is in your hand, that's awful.  My cords are less painful now with therapy.  I have range of motion back.  Now we are keeping an eye on the LE.  I can still see and feel the cords but they don't hurt nearly as much.  Strange things!  I am truely sorry about your arm and hand. 

toomuch

OMAZ - Thanks for your kind words. It really stinks. I had swelling in my upper arm for many months after surgery but before radiation it had completely gone away. 4 weeks after radiation the new cords appeared followed by LE in my lower arm/wrist and now the hand. I want to hope that when the cords go away the LE will follow because that's what happened in my upper arm but I'm afraid that I will have LE forever. I'm waiting for a custom glove but I just made an appointment to get an off the shelf one tomorrow. I can't wait the 2 weeks it will take to get the custom, I didn't work today and there's significant swelling this afternoon. Damn.

kira66715

Toomuch--I have hand swelling in my left hand, and really miss my wedding ring...I could kind of smack the rad onc--what if something came up??? I work for rad oncs, and I see them change the prescription if needed, all the time.

Here's my message of hope: my swelling started and stayed in my hand, but is really confined to between the MCP joints at this point. There was a point it was in my fingers, but they are usually down. I have to wash my hands at work and can't wear gloves, and know how you feel at the end of the day. If you can sneak into a bathroom and do some fist pumps--slowly open and close your fists with them over your head--around 20 times--it helps get that fluid out of the hand. Deep breathing too.

My cords went to my thumb, and I just heard a lecture, describing them into the hand.

It does get better--we develop accessory lymphatic pathways and it improves.

But it rots, and the impact on our lives, careers, and personal life in general is huge.

My current job is relatively slow paced, clinically, and I stick with it, because I can wear a glove at my desk, if needed. When I was busier, there was just no way....

Hang in there. Hand pumps with bathroom breaks. (Sometimes vinyl gloves don't do me any favors either.)

Oh, toomuch, you just don't need or deserve to have to deal with this---we just heard from a woman whose LE got better with her DIEP, so hopefully the surgery won't be an issue.

Kira

Omaz

kira - as I am reading your post I have my hands over my head doing slow fist pumps and taking deep breaths.....

toomuch - Good idea not to wait the two weeks for the custom garment!

kira66715

Toomuch--I'm a big fan of the medi95 gloves off the shelf--see if you can try one on, I've tried Juzo off the shelf and prefer the medi 95 (make sure it's not the "regular" medi 550.)

http://www.brightlifedirect.com/LYMPHEDEMA-PRODUCTS-Gloves-and-Gauntlets/c133_135/p1960/Medi-95-Glove-20-30mmHg-w/Compressive-Fingers/product_info.html

I have custom Juzo gloves and keep the medi95 gloves around also--tend to wear them at work. 

Kira

Omaz

Kira - do you have any suggestions for the wrinkling at the wrist?  I guess I move around a lot and my gaunletwrinkles and my sleeve will make wrinkle too eventhough when I put it on it looks great.  Any ideas?  I have lines in my skin when I take my garments off.

kira66715

Omaz, it's tough not to get "dents" at the wrist--some women put the sleeve over the gauntlet. I have a custom glove that goes to the mid forearm, and while I don't get a mark at the wrist, I get one at the end of the glove.

Kira

Omaz

Thanks Kira.

toomuch

KIRA - as always, thanks for your advice. I was fitted for a medi-95 glove this morning. Honestly, it's more comfortable then my gauntlet! My wrist is .7 cm bigger then baseline so I'll need to work on getting that down today. My LE therapist showed me how to use kinesio tape for my hand last week and it arrived yesterday afternoon. So, I taped last night. I didn't wrap because I fell asleep in the middle of doing MLD (hate when that happens!) but this morning the spaces between my MCPs actually look a little better. I hope today with good MLD and wrapping I'll get it down even more!

kira66715

Toomuch--I'm so glad the glove is comfortable--I really like them, and they have finger compression. When I'm really tired, I end up skipping MLD....

I went to this conference this week, and this LE therapist tried to show me a manipulation technique for my hand that would "cure" me--and hope springs eternal--Binney watched with horror--well, it didn't really help, and the MLD I did that night to deal with the results was so much better.

I find I "catch up" on days off--more wrapping and compression. But I sure do MLD and exercises on work mornings--I have to get up early, but it's worth it.

I'm sure you'll get great control of this soon, and I was thinking about you--just after radiation is suxch a time of inflammation, remodeling, fibrosis--it's a tough time--it will get better.

Kira

lago

I was given a glove from the beginning. If the fingers were long enough this off the shelf is pretty decent fit. I don't need the glove (no swelling in hands or fingers) but I might continue to get them. From what I hear typing with a gauntlet is a bit more challenging. I do a lot of computer work.

Omaz

Hi, I have a new cord/soreness in a new area down my arm, not too bad, but I wanted to share that my older cords are starting to disappear!  I was surprised last night when I was doing my stretches that when I extended my arm up I couldn't see them as well as before.  This is so encouraging and makes me feel less upset about the new area since it does seem that they can go away.  I think my therapy made a huge difference!  My LE therapist is going to two conferences on LE this spring.

toomuch

OMAZ-so nice to hear news of cords going away! Can I ask how long you've had them? I seem to take one step forward and two steps back so to speak. Some of my arm cords are better. I can still see them but they're not painful but the LE in my hand is worse. The cords extend into my hand too. My LE therapist is teaching a class on LE therapy and is away for 10 days. I hope that things don't get worse while I'm off from therapy. Keep us updated with your good news!

Omaz

toomuch - I looked back at my calendar and I wrote that my arm hurt to the wrist on Feb 3rd.  So that was 9 weeks ago when it probably got started while I was still doing rads.  I didn't start actually seeing the cords till last month.  So it's been a while.

toomuch

Too much tea late tonight and I can't sleep. I started looking at the earlier posts that were saved in my dashboard. When I read my posts on this thread, I can feel my frustration and despair. I'm posting now almost 2 years later to let newbies know that like everything, "cords too pass." My abdominal cords were thick and persistent and shaped like a pitchfork with 4 spikes feeding into one long cord. After almost 6 months, I asked my dermatologist to biopsy one. She did an open excisional biopsy on the long cord. I was somewhat disappointed because the pathology showed just fibrosis. They didn't identify lymphatic vessel architecture so I still can't be sure if it was lymphatic or venous cording. In any event, the biopsy cured the cording. Within a week, they were all gone! I wonder how much longer they would have persisted without the biopsy.  I had a minor surgical procedure for breast symmetry 2 1/2 months ago and did develop cording again, this time in my breast. Apparently, I just make cords. This one was small and painless and has gone away with MLD and compression.

My LE actually improved after my BMX with S-Gap reconstruction. It's mild and I can generally keep it well controlled. I have had a few flare ups when I have to resume wrapping. As Kira predicted, the LE in my fingers improved and I now have mild LE between the bones on the top of my hand.

I still get frustrated that I have LE sometimes but dealing with it is no longer daunting. I still wear a sleeve every day. I've found that I can get away with wearing the Soleida wave sleeve at work without a glove or gauntlet and my hand doesn't swell. At other times I wear a custom sleeve and glove, MLD once or twice a day and wear a night sleeve. I'm not as consistent as I should be with LE exercises but I use light weights at the gym which seems to help. If my trunk feels heavy, I use my flexitouch.  Of course, I still hope that one day there will be a true fix for LE but thanks to all of you who post advice and personal experience, I have the tools I need to manage my LE.

Many thanks to each of you who take so much of your own time to give advice and offer support to each of us.

Edited for spelling correction.

mnmbeck

Thank you for following up here.  I am relatively new here, and as I spend time reading through some of these posts that are a couple of years old, I wonder how things turned out.  I like to assume all is well and they moved on with their lives, since they don't post anymore!   It is nice to hear things got better for you!  Thank you for letting us know!

kira66715

hey Toomuch!  

I realized I've been dealing with LE since 6/2008, and it's part of my life, but not a welcome part.

It has gotten better, but I still wrap every night, although I rarely wear daytime compression. Work doesn't aggravate it like it did at first.

Over the last few months I got subacromial bursitis, rotator cuff tendinitis while on LOA after my hyst ( due to tamoxifen), luckily it's on my nonLE side, but it's been a long haul of nonproductive PT. I see the orthopod finally next week.

I'll get the occasional cord, high in the axilla--- I've learned that Therabands are not good for me-- but it goes away quickly with stretching. ( thank you Carol for reviewing my PT exercises and suggesting I use hand weights, I explained this to the PT but he couldn't hear me.)

LE was never a subject I wanted to become proficient in....

Very interesting about your open biopsy and the cure.

I switched med oncs because my original one ignored the tamoxifen issues, and when I tried to discuss how upset I was about an iatrogenic second primary, she cut me off with " but you're FINE now!" My new med onc did check me out for LE, and is very thoughtful and thorough.

We do drift away from the boards, yet my LE is still something I have to manage and factor in, and just yesterday I discussed with my LE therapist at my monthly visit for MLD, that I wondered if I'll ever be able to stop wrapping, and she said to see what I can get away with. Not yet, IMO.

Kira

toomuch

Kira - Your original MO sounds like a real jerk. I had an elective oophorectomy after BC dx because I read that AI's were more effective in patients with ILC but also because I didn't want the constant worry of developing endometrial ca. My MO was against the decision but I've never regretted it! I'm amazed that you found a MO who thought about LE. Mine recognizes that I have it but he doesn't ever evaluate it.

Do you know what triggered your shoulder problems? As if you aren't dealing with enough! Hopefully, the orthopod will offer a fix that doesn't include surgery! I hope that you have the pain under good control.

Yes, I've accepted that managing LE will be part of my daily routine for the unforeseeable future. However, I'm encouraged that there is much more interest in LE in the medical community and I'm hopeful that there will be effective treatments in the future!