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Cording / Axillary Web Syndrome (AWS)

Posted by Laurie, Volunteer Mentor @roch, Apr 4, 2019


Does anyone have experience with Cording, also called Axillary Web Syndrome (AWS)

I recently found a rope like structures under the skin in my armpit. I asked my radiation oncologist about and he explained it was called Cording and is scar tissue. I had a lumpectomy and few lymph nodes removed 6 months ago and I did not notice any cording. I am on my 3rd week of radiation and cording is now apparent.

Here is an article on cording:
https://www.breastcancer.org/treatment/side_effects/aws
The dr did give me some stretching exercises.
I am interested in hearing from others who have had cording and if you had any treatment for.

Laurie M

Interested in more discussions like this? Go to the Breast Cancer Support Group.

journey99 | @journey99 | Oct 27, 2023
In reply to @tduser2023 "Hi Friends, I am 45 and I was diagnosed in 2019 on right side, mastectomy was..." + (show)
@tduser2023

Hi Friends,
I am 45 and I was diagnosed in 2019 on right side, mastectomy was one and then implant was placed. I have been taking Tamoxifen since 2019. My Dr explained lot of side effect of Tamoxifen and I am aware of them.

After surgery I was going to lymphoma clinic to drain and then Physio Therapy because I started developing cording on right arm from where lymphnodes are taken out. My nurse told me I started having cording(AWS - Auxiliary Web Syndrome). Later they showed me how to break the cording, even my husband do them for me. I had been doing some starches, exercise to manage the pain and keep mobility as much as possible.
Initial it has started on right arm but after 1 year or so I started having on left arm and it has progressed in all over body. I have done MRI and even lately I have seen rheumatologist and did test and it was clear.
Even after 4 years of surgery and I am still living with pain mostly due to cording. Sometime it will be on legs, on finger, calf, stomach or chest. I am very active women and try to control my weight, do exercise, walking, keep my self busy with kids and family. But this pain drags me and my family behind.

Any one has any similar situation and how did you manage? Any suggestions are appreciated.

Jump to this post

I had cording after surgery on my right arm. My PT showed my husband how to stretch and massage it. We did it faithfully twice a day for 3 months and one day it just stopped hurting. That is exactly what PT said would happen.
Good luck, I know how much it hurts.

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Oct 29, 2023
In reply to @hollyng "I had surgery September 22 and I have cording. It’s very painful. I’m presently looking for..." + (show)
@hollyng

I had surgery September 22 and I have cording. It’s very painful. I’m presently looking for a PT or occupational therapist who is experienced in stretching and massaging this palpable painful area. Please let us know your outcome.

Jump to this post

@hollyng, I’m tagging @roch so that she sees your question to her about cording and tips on finding a PT or OT specializing in Axillary Web Syndrome.(AWS).

REPLY
Moderator
Colleen Young, Connect Director | @colleenyoung | Nov 5, 2023
In reply to @tduser2023 "Hi Friends, I am 45 and I was diagnosed in 2019 on right side, mastectomy was..." + (show)
@tduser2023

Hi Friends,
I am 45 and I was diagnosed in 2019 on right side, mastectomy was one and then implant was placed. I have been taking Tamoxifen since 2019. My Dr explained lot of side effect of Tamoxifen and I am aware of them.

After surgery I was going to lymphoma clinic to drain and then Physio Therapy because I started developing cording on right arm from where lymphnodes are taken out. My nurse told me I started having cording(AWS - Auxiliary Web Syndrome). Later they showed me how to break the cording, even my husband do them for me. I had been doing some starches, exercise to manage the pain and keep mobility as much as possible.
Initial it has started on right arm but after 1 year or so I started having on left arm and it has progressed in all over body. I have done MRI and even lately I have seen rheumatologist and did test and it was clear.
Even after 4 years of surgery and I am still living with pain mostly due to cording. Sometime it will be on legs, on finger, calf, stomach or chest. I am very active women and try to control my weight, do exercise, walking, keep my self busy with kids and family. But this pain drags me and my family behind.

Any one has any similar situation and how did you manage? Any suggestions are appreciated.

Jump to this post

@tduser2023, I hope you've seen all the helpful responses to your questions and concerns about entire body pain related to axillary web syndrome or cording. How are you doing?

REPLY
mchler73 | @mchler73 | Nov 6, 2023

Laurie,
I had 2 nodes removed and about a week later noticed the Cording. It was super painful.
I hadn’t started PT yet so I didn’t know what it was and it freaked me out.
My PT started doing “manual Lymph drainage”, gave me a compression sleeve to wear during the day and also gave me daily exercises to do. It has helped so much! Are you able to see a PT who specializes in this?

REPLY
tduser2023 | @tduser2023 | Feb 9 12:12am

I am 45 and I was diagnosed in 2019 on right side, mastectomy was one and then
implant was placed. I have been taking Tamoxifen since 2019. My Dr explained lot of side effect of Tamoxifen and I am aware of them.

After surgery I was going to lymphoma clinic to drain and then Physio Therapy because I started developing cording on right arm from where lymphnodes are taken out. My nurse told me I started having cording(AWS - Auxiliary Web Syndrome). Later they showed me how to break the cording, even my husband do them for me. I had been doing some starches, exercise to manage the pain and keep mobility as much as possible.

Initial it has started on right arm but after 1 year or so I started having on left arm and it has progressed in all over body. I have done MRI and even lately I have seen rheumatologist and did test and it was clear.

Last Oct I was diagnosed on other side mastectomy was done. My 2 lymph nodes were removed with mastectomy.

Even after 4 years of surgery and I am still living with pain mostly due to cording. Sometime it will be on legs, on finger, calf, stomach or chest. I am very active women and try to control my weight, do exercise, walking, keep my self busy with kids and family. But this pain drags me and my family behind.

Any one has any similar situation and how did you manage? Any suggestions are appreciated.

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Feb 12 9:37am
In reply to @tduser2023 "I am 45 and I was diagnosed in 2019 on right side, mastectomy was one and..." + (show)
@tduser2023

I am 45 and I was diagnosed in 2019 on right side, mastectomy was one and then
implant was placed. I have been taking Tamoxifen since 2019. My Dr explained lot of side effect of Tamoxifen and I am aware of them.

After surgery I was going to lymphoma clinic to drain and then Physio Therapy because I started developing cording on right arm from where lymphnodes are taken out. My nurse told me I started having cording(AWS - Auxiliary Web Syndrome). Later they showed me how to break the cording, even my husband do them for me. I had been doing some starches, exercise to manage the pain and keep mobility as much as possible.

Initial it has started on right arm but after 1 year or so I started having on left arm and it has progressed in all over body. I have done MRI and even lately I have seen rheumatologist and did test and it was clear.

Last Oct I was diagnosed on other side mastectomy was done. My 2 lymph nodes were removed with mastectomy.

Even after 4 years of surgery and I am still living with pain mostly due to cording. Sometime it will be on legs, on finger, calf, stomach or chest. I am very active women and try to control my weight, do exercise, walking, keep my self busy with kids and family. But this pain drags me and my family behind.

Any one has any similar situation and how did you manage? Any suggestions are appreciated.

Jump to this post

Hi @tduser2023, I'm sorry to hear that you are still dealing with pain related to cording. I moved your question to this discussion that @roch started a while back:
- Cording / Axillary Web Syndrome (AWS)
https://connect.mayoclinic.org/discussion/cording-axillary-web-syndrome-aws/
I did this so you can read previous posts and connect with others dealing with pain and cording. It is so exhausting to deal with persistent pain.

REPLY
1 reply
jane2024 | @jane2024 | May 20 11:13am
In reply to @colleenyoung "Hi @tduser2023, I'm sorry to hear that you are still dealing with pain related to cording...." + (show)
@colleenyoung

Hi @tduser2023, I'm sorry to hear that you are still dealing with pain related to cording. I moved your question to this discussion that @roch started a while back:
- Cording / Axillary Web Syndrome (AWS)
https://connect.mayoclinic.org/discussion/cording-axillary-web-syndrome-aws/
I did this so you can read previous posts and connect with others dealing with pain and cording. It is so exhausting to deal with persistent pain.

Jump to this post

I recently developed cording. I noticed the issue a couple of weeks after the surgery but the nurse was not sure and said it would probably get better as the scars heal. It has not so I went to see an occupational therapist today and was told that it was cording. I will start OT treatment and see how it works. It is not pleasant to have cording to say the least.

REPLY
3 replies
Moderator
Colleen Young, Connect Director | @colleenyoung | May 26 8:34pm
In reply to @jane2024 "I recently developed cording. I noticed the issue a couple of weeks after the surgery but..." + (show)
@jane2024

I recently developed cording. I noticed the issue a couple of weeks after the surgery but the nurse was not sure and said it would probably get better as the scars heal. It has not so I went to see an occupational therapist today and was told that it was cording. I will start OT treatment and see how it works. It is not pleasant to have cording to say the least.

Jump to this post

@jane2024, I'm glad that you consulted with an occupational therapist. I'm tagging @roch who also experienced cording.

Jane, did you start treatment with OT yet? How is it going?

REPLY
jane2024 | @jane2024 | Jun 6 8:02am

Thanks for asking, Colleen. I only started recently as it was not easy to find a good OT. I think the therapy helps but will see how it works as I am getting more sessions in the coming weeks.

REPLY
lislordav | @lislordav | Jun 7 7:43am
In reply to @maggieb892 "Try this: www.medbridgego.com access code:hm7mjrjp" + (show)
@maggieb892

Try this: http://www.medbridgego.com access code:hm7mjrjp

Jump to this post

Thanks for that. I have cording over right rib cage. 2 and a half months after double mastectomy with reconstruction

REPLY
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