Monday, February 28, 2011

Axillary web syndrome

When someone you know has breast cancer the first thing that pops into your head when you hear that they will be undergoing a mastectomy and chemotherapy (other than 'oh shit') is boob loss and hair loss.

Right?

I know this, because that is what popped into my head when I found out I had breast cancer.

Never ever did the words 'axillary web syndrome' come to my mind.

Let me tell you about this little known 'side effect' of mastectomy. Even though it's not well known, it is well documented and once you start researching it, you'll see lots of info on it.

And lots of pictures.

It looks something like this:

and this


Unfortunately after undergoing a double mastectomy, I now am lucky enough to experience axillary web syndrome first hand. Woohoo.

"Cording" - as it is referred to instead of the 'axillary web syndrome' official name is when the lymphatic system is disrupted, by the surgery. A (tennis ball size, remember) chunk is taken out of your armpit for the lymphnodes to be biopsied. When the lymph drainage 'veins' (for a lack of a better word) are cut they sometimes experience trauma and start getting rope like and start showing up through the skin. The arm feels tight and cannot be stretched any more without pain. Even holding a pen is painful (you can see why I haven't typed for a while, this is hurting me)

Today I went and saw a specialist in lymphatic drainage. She explained to me that lymph vessels are now cut, and they are trying to find a way back to each other. The ones that do make it, will feel tight and will need to manually be stretched (by her) in order for me to be able to move my arm properly again, and for the tightness and pain to go away. The ones that don't find a way back to each other, will eventually become brittle and when stretched and manually stimulated will 'snap' and break. Then, they will be reabsorbed by your body as lymphatic fluid.

How wild is this? I never knew this before.

So, on to my appointment today.

She has to manually stimulate the 'cords'. Ouch! If it sounds painful, it's because it is.

I have about 5 coming out from my armpit, all the way to my thumb.
(I know, I know, could I BE more disgusting right now?!)

Anyway - she grabs the first one and starts stretching the bejeeses out of it. It feels painful but I want it to get better so I bite my tongue. I am there for 40 minutes. After about 20 minutes of stretching one cord snapped. I have never ever felt anything like it before. No pain, but a weird 'snapping' sensation inside my body. It was accompanied by a 'snap' sound. Eery.

I looked up in shock and she laughed. Victory. She asked me to reach up, and immediately my range of motion had improved. WOW.

She worked on them a bit more, but I was in too much pain by the end of it and she let me rest. I am to go back tomorrow and we'll do it all again.

Doing this for the next few months will help me stretch these damn cords out and snap the ones that are brittle so I can stretch out my arm again.

'Cause I didn't have enough to worry about.


15 comments:

pinkunderbelly said...

Ooooh, lymphedema sucks! So sorry you have to endure this, on top of everything else, but I'm glad you found a lymphedema specialist. Hang in there, girl. You're stronger & more bad-ass than this cancer.

Knock knock - it's cancer! said...

Pink - lymphedema does suck! Luckily I don't have it (yet?) Although, I understand that developing the cording as early as I did, does put me at a higher risk. Bummer.

Genkicat said...

Yuck. I'm glad you found someone to help you with this. And hopefully full motion will be yours again!

I loved the t-shirt in the last post! LOL.

Sayre said...

wow... what strange phenomenon! Once you explained it, it made some sort of weird sense, but I can also see how it would hurt like hell. It's good that you have a nurse who can help you deal with it. No one I know who's had breast cancer has mentioned this - perhaps because they didn't know how to explain?

Vancouver Voyeur said...

I actually had heard of this before, I can't remember when or why. It seems like there is no end to the problems this cancer has caused, so keep in mind, you're alive and you will continue to be there for your kids. Any discomfort and disruption in your life now, is worth being there for your kids for years to come.

Kathy said...

ARGH! I wrote a long comment in reply to your post last night and then when I clicked on "Post Comment" POOF! It was gone... Now I will be extra careful with copying before I post for a few days/weeks and then get lazy again and I am sure it will happen again. GRR! But not today...

I didn't have the energy to recreate it then and now I don't remember half of the things I said. But, please know that I am so sorry you have hit another speed bump on your journey. You continue to be in my thoughts and prayers. Hang in there! (((HUGS)))

findinganewnormal said...

Thanks for stopping by my blog and saying "hi" earlier today. Your attitude is amazing, and I am inspired. My MIL had breast cancer, so I have seen the treatments up close - it can be tough - but I love how empowered you are! I happen to believe that there is power in positive thinking. Hang in there during all of this tough decision making. As others have said, I think you can trust your heart/gut to help you make the decisions that are best for you! After all, you're the expert on you!

tweetey30 said...

Oh wow.. I cant believe more discomfort.. I am sorry to hear this.. Like VV said just keep thinking about what is yours years to come to now. Hugs my friend. I have to go finish eating and then get ready for work. I am not sure how many more days I have until they run out of work but I have work for now.

Mandi said...

Ouch! I am so sorry to actually see what you are talking about. :( I hope they get that fixed up for you so that you can be more comfortable soon!

Knock knock - it's cancer! said...

Genkicat - thanks, I'm glad I found her too. Although she hurts me when I go :( LOL.

Sayre - Not everyone gets this after a mastectomy, some do and some don't. I just had never even heard about it though, so I was very shocked when it happened to me. I like to be prepared and I felt very taken back.

VV - I make no bones about it, my children are the ONLY reason I am fighting this hard. They need me and I want to be here for them. Given the alternative, I will take all the pain in the world.

Kath - I hate Blogger sometimes. I mostly hate it right now because I looove your long comments :) But I know how frustrating it can be, I used to copy my comments too, but then I get lazy again until poof, another comment gets lost in cyberspace. Thanks for being there in thought with me. Weird or not, I can FEEL you.

Finding - Thanks for stopping by, I appreciate your kind words of encouragement.

Tweets - I was thinking about you last night with the debit card thing... hope it all got itself sorted out :)

Mandi - You are my buddy throughout all this you know that right? I love getting your emails and reading about what is going on with you, and it's great bouncing ideas and experiences off one another. What a weird way to form a friendship, isn't it? Hahha.

Sami said...

Holy craaap! My stomach flopped when you said that one 'snapped'! So strange! You are teaching me quite a lot about breast cancer that I didn't know before. My brain is feeling appreciated today and so happy ;-) Thank you for sharing this!

Tonya Graham Jamois said...

Sorry you have to deal with this. I did too. I also developed lymphedema after my 6th round of chemo. I just found your blog today. On the one hand, I'm glad to find another "breast cancer blogger." But on the other hand, I'm bummed to find another breast cancer blogger. Sigh. Hang in there! The cording comes and gos for me. Find a good physical therapist who can treat that as well as teach you to address early lymphedema. :-)

Jenny Garrett said...

HI there. After a wide area excision (not mastectomy) and a full axillary dissection, I have developed AWS too. Luckily, my McGrath Foundation Breast Nurse (Sydney, Aust) diagnosed it and referred me to a physiotherapist. I haven't yet had my first treatment, but I am reading everything about it and have now resumed my stretching exercises in earnest.
I am 4 weeks post-op and begin radiation in 2 weeks' time.
Thanks for posting your experiences so that others, like me, can benefit.

Jenny Garrett said...

HI there. After a wide area excision (not mastectomy) and a full axillary dissection, I have developed AWS too. Luckily, my McGrath Foundation Breast Nurse (Sydney, Aust) diagnosed it and referred me to a physiotherapist. I haven't yet had my first treatment, but I am reading everything about it and have now resumed my stretching exercises in earnest.
I am 4 weeks post-op and begin radiation in 2 weeks' time.
Thanks for posting your experiences so that others, like me, can benefit.

Jenny Garrett said...

HI there. After a wide area excision (not mastectomy) and a full axillary dissection, I have developed AWS too. Luckily, my McGrath Foundation Breast Nurse (Sydney, Aust) diagnosed it and referred me to a physiotherapist. I haven't yet had my first treatment, but I am reading everything about it and have now resumed my stretching exercises in earnest.
I am 4 weeks post-op and begin radiation in 2 weeks' time.
Thanks for posting your experiences so that others, like me, can benefit.