Help-axillary web syndrome?

[Chelee]

Leslie, After my MRM I had some cording...the only difference is at the time I had NO clue what it was? I even showed it to my onc, surgeon and anyone else that would look at it. They all told me they didn't know what it was? I thought since that cording was so hard it was clots in places. Those cords were so hard! No one would believe how many people I showed it too. Even the techs that injected me with contrast at my scans. They would look for a vein and I would say "here's one". They would see that hard cord under my skin and say they never saw such a thing. It wasn't until 5 or 6 months later on this board someone mentioned it.

Also when I had this cording which was under my arm and in my "ditch" I had serious shoulder pain. I remember telling my onc that I felt like my shoulder was out of its socket. I lost lots of range of motion. I asked if it was from my MRM and if it would get better in time? She said it *wasn't* from that and referred me to a orthopedic doctor. (I DIDN'T go...I knew it had to be related to the MRM in some way.) In time I just kept using my arm as much as possible without over doing it...and the cording all went away by itself...and the shoulder is now fine and back to normal. I think it was about4 months or more. But it did go away. As far as exercises my NP told me to get close to the wall with your toes almost touching it and walk your fingers/hand up the wall slowly until its over your head. You can do it several times a day. When you walk it up the wall you'll know when to stop. Your shoulder will let you know. That did help my shoulder. Take it slow and don't over do it. And of course you can ask your onc or surgeon about this first. I hope things get better for you soon.

I know pretty much how you feel because no one told me what exercises to do when I left the hospital. Or what I should or shouldn't be doing. I was left in the dark. I had to call down there and push to find out anything. Thankfully for one NP she was the ONLY one that helped me. I'm also use to being dismissed when I bring anything up. I've been told SEVERAL times to LIMIT my access to the internet. I even found that written in my onc's "progress notes" that she told me to stop it. (Can you believe that!) If it wasn't for the NET and this board I wouldn't know a thing. Who are they to tell me to stay off the internet and the boards. They are just afraid I will find out what they AREN'T doing for me. So I feel for you. Keep being pro-active...continue doing your homework...ignore them. You know what sites are reputable. Hang in there.

Chelee

[PinkGirl]

Hi Faux

I also had cording, but it was definitely not as severe as your description. It felt like a cord running from my armpit down the inside of my arm to just below the elbow crease. The treatment for it was exactly the same as treatment for lymphedema. I had a tightness in my chest across the mast. incision but it felt more like very tight duct tape. I did the exercises and wore an elastic arm stocking and glove and it eventually got to almost 100%. It took about 9 months. Again, your description sounds much more extreme.
Good luck with this.

[StephN]

Dear Leslie -
Variations of this problem can occur at almost any stage of diagnosis AND treatment for breast cancer.

My AWS occurred after my excisional biopsy and lumpectomy with sentinal node biopsy. This was without any further node dissection - just a third biopsy as they kept missing my small (but very lethal) tumor. Somehow that brachyial nerve got bothered by that surgery, which was also on the right and affecting my right arm.

So when I went for my second opinion I LOVED the med onc and agreed to interview the surgeon he worked most with. That man was so careless when he examined my AWS area. When I asked him what he would do about it (as it was shown that my sentinal node was cancerous and the axilla would need to be done), he said, "Oh, just snip it!"

I said "thank you very much, I will get back to you if I need your services" and never saw him again. When going back to my original surgeon (a thoracic specialist) he said he would take the extra ten minutes to free up that nerve which runs through the axillary nodes area. That way I would have a still intact nerve, just badly bruised.

After performing the exercises for 3 months I had my full range of motion back. A TIP: I found that doing the exercises in the shower under very warm running water helped me progress faster. I also massaged in some cream for sore joints and tendons to help the area around the healing nerve.

Hope this helps. The main thing is that I wanted to have feeling at the back side of my arm and if that nerve had been severed it would never have been normal again. I know several women who say they don't have feeling at the back of their arm as the nerves were cut in the surgery.