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Mentor

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.

Zebra | @californiazebra | Oct 24, 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

Wow, I’m so sorry to hear that! That sounds really rough to have it all over your body. I’ve had it in both arms, arm pits and some into chest after double mastectomy. More on right side where lymph nodes were taken. Painful and causes range of motion issues. Have gone through PT a few times after double mastectomy and after surgery due to chest wall recurrence. Aside from surgeries, I’ve found anytime I overuse my right arm like deep cleaning the house, it all flares up. Only PT seems to help. Good you have your husband to help. They did cupping on me there too and that helped. I bought some for home but it seemed too hard to do it on myself. My friend’s big puppy recently put a few punctures in my right arm and that triggered painful cording for a few weeks.

I’ve never heard of it spreading to the whole body. Prayers for you! Keep up the PT and stretching.

REPLY
mdr3 | @mdr3 | Oct 25, 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

There is not a day that I don't have pain, stiffness, swelling on my mastectomy side. As long as I know what it is I can live with it (however! I am much older than you: 73) But, like you I am very active, etc. Was also diagnosed and had surgery, chemo, radiation for Stage IIIC in 2019. If I were in your spot, I would seek a second opinion at a cancer center and see what can be done. Sometimes surgery may be indicated to ameliorate the situation. Best to you.

REPLY
maggieb892 | @maggieb892 | Oct 25, 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

Physical therapy has been a great help! I know that what also helps is doing the exercises at home too. The breast and arm exercises will be a life long routine for me. I get out my yoga pad, get on the floor, and stretch every day. It seems that when I do the stretches in the morning they help my movements all day. And I thought about that, sure makes sense that after 8 hours of being in bed, I'd need some stretching! Good luck.

REPLY
1 reply
sequoia | @sequoia | Oct 25, 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 am so sorry to hear of your pain and cording. Is your pain all over at same time or different areas? I never had heard of cording until this group.
I had a one sided mastectomy in 2019. During recovery I could not lay on my right side , surgery side, as rib area was painful only while laying on it. I thought it’s from surgery, kept trying and off and on it would be better. Fast forward 4 years and still have tenderness there. I believe it was causing spasms in my shoulder which was #7 level pain. It would come and go. I called them episodes. The spasms started getting more and more frequent, so I started seeing an acupuncturist. She said that there was scar tissue in that area from surgery. I see her regularly. The spasms are no more and all that is left is a deep sore spot - like a sore muscle. Acupuncture has worked for me but it take a long time. I’ve been 11 months.
Massage, cupping, anti inflammatory diet, (I’m not really strict but watch foods), epsom salt baths are the things I’m doing. Castrol Oil on a cloth, then heat applied on top is good for pain too.
Just some thoughts. Blessing to you and hope things improve for you.

REPLY
1 reply
mdr3 | @mdr3 | Oct 26, 2023
In reply to @maggieb892 "Physical therapy has been a great help! I know that what also helps is doing the..." + (show)
@maggieb892

Physical therapy has been a great help! I know that what also helps is doing the exercises at home too. The breast and arm exercises will be a life long routine for me. I get out my yoga pad, get on the floor, and stretch every day. It seems that when I do the stretches in the morning they help my movements all day. And I thought about that, sure makes sense that after 8 hours of being in bed, I'd need some stretching! Good luck.

Jump to this post

I need to do this!! PT did not help -- but the at home stuff in the a.m. makes sense. Feel free to share your routine!

REPLY
2 replies
hopeful64 | @hopeful64 | Oct 26, 2023
In reply to @sequoia "@tduser2023 I am so sorry to hear of your pain and cording. Is your pain all..." + (show)
@sequoia

@tduser2023 I am so sorry to hear of your pain and cording. Is your pain all over at same time or different areas? I never had heard of cording until this group.
I had a one sided mastectomy in 2019. During recovery I could not lay on my right side , surgery side, as rib area was painful only while laying on it. I thought it’s from surgery, kept trying and off and on it would be better. Fast forward 4 years and still have tenderness there. I believe it was causing spasms in my shoulder which was #7 level pain. It would come and go. I called them episodes. The spasms started getting more and more frequent, so I started seeing an acupuncturist. She said that there was scar tissue in that area from surgery. I see her regularly. The spasms are no more and all that is left is a deep sore spot - like a sore muscle. Acupuncture has worked for me but it take a long time. I’ve been 11 months.
Massage, cupping, anti inflammatory diet, (I’m not really strict but watch foods), epsom salt baths are the things I’m doing. Castrol Oil on a cloth, then heat applied on top is good for pain too.
Just some thoughts. Blessing to you and hope things improve for you.

Jump to this post

Acupuncture has also worked wonders for me. I also do yoga.
Hope you find what works for you.

REPLY
maggieb892 | @maggieb892 | Oct 26, 2023
In reply to @mdr3 "I need to do this!! PT did not help -- but the at home stuff in..." + (show)
@mdr3

I need to do this!! PT did not help -- but the at home stuff in the a.m. makes sense. Feel free to share your routine!

Jump to this post

I typed out the exercises, then lost my internet and the message I wrote. I'll try again later.

REPLY
maggieb892 | @maggieb892 | Oct 26, 2023
In reply to @mdr3 "I need to do this!! PT did not help -- but the at home stuff in..." + (show)
@mdr3

I need to do this!! PT did not help -- but the at home stuff in the a.m. makes sense. Feel free to share your routine!

Jump to this post

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

REPLY
mdr3 | @mdr3 | 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

thank you SO much! What a gift. I KNOW it will help, as they are very unlike anything that was suggested to me along the way. The very best to you!

REPLY
1 reply
maggieb892 | @maggieb892 | Oct 27, 2023
In reply to @mdr3 "thank you SO much! What a gift. I KNOW it will help, as they are very..." + (show)
@mdr3

thank you SO much! What a gift. I KNOW it will help, as they are very unlike anything that was suggested to me along the way. The very best to you!

Jump to this post

good luck. If you have any concerns, check with your doctor or PT/OT person. Don't do any exercises until you are cleared post surgery.

REPLY
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