Did you have axillary web syndrome (cording) after ALND?

Fightingirl I am so glad! you've got this... for rads they will have to work within,your mobility issues, and the PT will bring relief! I am so sorry you have to do both at once. One of my fear with the cording was that it would get worse with the second surgery... and so far that has not been the case... so hopefully the rad treatment will not exascerbate things for y0u either. It's a pain to have all these dr apps... but you'lol be glad when you are at the other end! My BS just keeps saying that we have to identify the hoops we need to get through and then get through them... oddly, that has been a mantra that has helped me... just something to get Through. Hoping for lots of progress

💪🏻💪🏻💪🏻

You got this!!! If I could stand up w/out fainting rn I'd be out there w you!

ugh... hopefully just more swelling. I was always sore the day after PT.... hope today is bette

Well at this point I'm only being watched for lymphedema (left arm measures 1 cm larger than right - concerning since right is my dominate arm) I am also doing my PT at Coral Center for Oncological Rehabilitation and Lymphedema. That is all that they do so I sure hope they know what they are doing! Thank you for the heads up...I actually do feel like just one treatment helped some but I've got a ways to go.They are really treating the cording and watching for lympadema. The massage is going to be painful no matter how soft they go as I can touch my arm lightly with one finger and feel it

did any of you have cording or just lymphadema? I spoke with my therapist today and yes lymphadema massage and lymph massage should be very gentle. With cording the only way to break up scar tissue and such is with pressure. They also used a ultrasound machine on my lower arm because it can't get close to where the cancer is.

my PT did a lot of manipulation of the cord to get it to loosen and attempt to,pop... not like a deep muscle massage, but more like gentle pinching..

I had axillary web syndrome more than a YEAR after my surgery! I was in the shower one day and it felt like there was a piece of linguini stuck in my arm (starting in armpit.) I freaked out thinking it was a blocked blood vessel or something. I went to emergency room and they didn't know what it was, but did US and ruled out it being anything that would kill me before I saw my GP. Went to my GP and she didn't know what it was either, but called me later that night and had talked to a breast specialist about me and said that was what it was. It went away in a week or so. I don't think any of my doctors have seen it show up that long after surgery. But it is fine now. I do do yoga 4 times per week, which really helps keeps that area under my armpit somewhat loose, but it is definitely still not quite as flexible as my other arm 2 1/2 years after surgery. That is the one things that reminds me of cancer every single day is that tightness in my breast and armpit

omg doing a happy dance, fightingirl!!! For real!!! Yoga coming soon... my range of motion is nearly back.... you'll get there! Woo Hoo for,victories big and small!!

Fightingirl - I will think of you in yoga Saturday morning - I promise!

After the lumpectomy had healed, my breast and arm felt pretty much normal. It was the radiation that really tightens up the area and I believe is why I'm still feeling tightness. I had read that it takes a good year to recover from radiation, but I think I'm on the lifetime plan. It certainly isn't like it is pain or anything, just a tightness - a friendly reminder of the disease.

Just an FYI - I did hot yoga during most of chemo and radiation, but had to stop during the last few weeks of radiation and until my open sores healed. They didn't want sweat getting in the sores or the rubbing of the fabric on my breast. I did get fairly badly burned compared to most people according to my radiologists, even though I didn't really think it was bad as far as pain goes or anything. Very manageable in my opinion (although not going to yoga killed me!)

yes, I try meditation from time to time but I struggle sticking with it. Hot yoga is my favorite!! I like tradtional classes but there is just nothing like the focus and feeling you get from a hot yoga class. I am doing brachytherapy radiation. I start my first treatment at 8am tomorrow! Thanks for thinking of me Saturday am...I'll try to catch those good vibes!

Dcbc, is that you in the pic??

Little frustrated--lump back in Oct with 6 nodes removed--finished rads 3 weeks ago--back to exercise--had cording after surgery saw PT --improved--now axilla cording back!! Is this related to more exercise or not enough? I have been doing some lite weights and cardio--tired of being held back--how many have this cording issue on going? Docs dont have answers--RAD ONC says do less exercise--frustrated!

Most likely---just very frustrated that this may always be an issue!! I want my old body back!

Tbirdy, my cording showed up about 3 weeks after surgery. No one knew what it was and I got no advice or treatment. When it was time for rads I couldn't get my arm up over my head where they wanted it (not even close) so the RO gave me a booklet with stretching exercises, said to do them twice a day, and come back in 2 weeks. Shoulda been given that at the beginning, but yeah, it did help. It got much better, not all gone, but better. But after rads the cording and tightness came roaring back worse than ever. They finally sent me to PT then. But be careful with that. One of the PT gals tried to massage away the big cord and I stupidly stayed quiet and let her do it even though it was very painful. Woke up the next morning with a big puffy swelling there, and now I get to live with truncal LE for the rest of my life. So be cautious, and listen to your gut. The other PT gal was gentle, massaged it lightly like a stroking type motion, not painful, and taught me stretching exercises to do every day. All that was helpful. I will say, it never went away completely, but over time it has diminished by about 90% and I do have full range of motion back.

I don't think exercise makes any difference one way or another. When you stretch that arm, do it slowly and gently, you have to push it to the point where you can feel the pull, but not actual pain, if that makes sense.

Radiation definitely can make it worse.

As far as exercise and lymphedema risk, there's an excellent thread about that very thing, will try to find it.

I had a unilateral mastectomy with immediate reconstruction about 2.5 weeks ago. After they removed the drain, I noticed a cord under my arm. I was able to see an OT who is lymphedema specialist a couple of days later. She showed me stretching exercises and firmly massaged the three cords she felt/saw. One of them popped right away and I had so much greater range of motion. It was amazing! I agree with the post above that there are different approaches to AWS as there are to many issues raised in this forum. We need to embrace what works best for us. For me, I am going back to my OT for more of the firm massaging this week and cannot wait! Meanwhile, I am stretching every day. Best of luck to everyone here!