for those with axillary web syndrome, here is an article on its incidence

Lani · 03-24-2009, 06:51 AM

which shows it to be much more common that thought in those who have axillary node dissection

Breast Cancer Res Treat. 2009 Mar 21. [Epub ahead of print]

Axillary web syndrome after axillary dissection in breast cancer: a prospective study.

Torres Lacomba M, Mayoral Del Moral O, Coperias Zazo JL, Yuste Sánchez MJ, Ferrandez JC, Zapico Goñi A.
Alcalá de Henares University, Madrid, Spain, maria.torres@uah.es.
The axillary web syndrome is a self-limiting and frequently overlooked cause of significant morbidity in the early post-operative period after breast cancer axillary surgery, which is characterized by axillary pain that runs down the medial arm, limited shoulder range of motion affecting mainly shoulder abduction, and cords of subcutaneous tissue extending from axilla into the medial arm, made visible or palpable and painful by shoulder abduction. We evaluated the incidence of axillary web syndrome after axillary lymph-node dissection. Altogether 116 patients who underwent axillary lymph-node dissection were assessed for axillary web syndrome. Range of shoulder abduction, pain, and the subjective feeling of tightness along the arm were recorded. Axillary web syndrome was found in 56 patients, which means an incidence of 48.3% (CI95%: 38.9, 57.7). Axillary web syndrome is a significant self-limited cause of morbidity of axillary surgery ocurring not only in the early post-operative period.
PMID: 1930605

chicagoetc · 03-24-2009, 05:13 PM

What does "self-limited" mean here?

Snufi · 03-24-2009, 05:29 PM

Hi to all,

I have this syndrome and now am involved in a study that has the objective to eliminate the pain, tightness and other symptoms. it is a 6 week study that does not involve drugs. If anyone wants to know more info, please e-mail me. My pain has subsided since the beginning of the study, 5 weeks ago.

Snufi

mmoons · 03-24-2009, 05:49 PM

I am having this surgery on May 27. I wonder if there are preventative messures?

Thinking about all of you every day!

Maureen

chicagoetc · 03-24-2009, 05:51 PM

Snufi,

Does it involve some kind of physical therapy/exercises? [I only ask because this was what resolved it for me...and which was what I used one time later when it started coming back.]

Melanie

PS: Maybe you don't want to say here in case others want to join the same study?

Lori R · 03-24-2009, 07:40 PM

Lani,
Thank you so much for posting....I've been having this tightness and ache in my chest that radiates to my arm pit. I am CERTAIN this is what it is!!!

Amazing....I had JUST scheduled an appointment with my radiology oncologist as a follow up. I'll keep the appointment but I am CERTAIN.

OK.....I must admit to a wave of scanxiety, I have my 6 month set of complete scans in early April and I was afraid that the ache was signifying cancer in the chest wall. For the moment I am very relieved.

Melanie and Snufi,
Any insights in terms of what I should do? Based on some extra internet searching I am hoping that some stretching exercises is the answer. I'd appreciate any information you can share.

Thanks!!!

Sheila · 03-25-2009, 06:55 AM

I ended up with frozen shoulder, which I guess is very common after a mastectomy...now I am wondering if this might be the tightness I have...I was thinking it was contractures from the implant!

chicagoetc · 03-25-2009, 06:41 PM

Sheila,

If it was a frozen shoulder / axillary web syndrome, you probably would have had trouble raising your arm. I'm not sure they totally know what it is ("cords of subcutaneous tissue") but I think it is related to lymph nodes being removed. I could be wrong. Whatever it is, it is painful, tends to make moving forward/reaching for something painful (the cords tighten, you move less, they tighten more). Per report they eventually resolve of their own accord after about six months.

Maureen,

I don't know what you can do to prevent this. My guess is being in good physical shape prior to surgery is a good or at least can't hurt. Once you get through the surgery and are told you can start stretching exercises (e.g. moving your hands/arms slowly up the side of a wall and other similar stretching exercises) that could help. I wasn't expecting this to happen, went back to work, then found reaching with my hand / arm was getting more and more painful. I was referred to rehab (the same folk who do physical rehab for lymphodema) and it helped a lot. I also learned how to massage my arm to lessen the chances of lymphodema when other things happened to my arm.

Melanie

PS: Anything with a solution is a good problem, relatively speaking...and this is one of those things.

swimangel72 · 03-27-2009, 10:45 AM

This cording is indicative of disruption of the lymph system. It happened to me - I needed the help of a certified lymphedema therapist to eliminate the cording and restore my range-of-motion. The cording was extremely painful - I couldn't lift my hand even shoulder height. The cord went from my arm pit all the way down my arm to my wrist. My oncologist was the only one who helped me.........I was crying in pain and frustration - also it was extremely disturbing to see this cord running down my arm just under my skin. I felt like something Alien was growing there! My LE therapist was an ANGEL......she measured my arm and told me I had Stage 1 lymphedema - the swelling in my arm wasn't noticeable to untrained eyes. She fitted me for a compression sleeve and gauntlet for my hand for future use. As for prevention - there is no prevention that I know of - except to be informed, and healthy. And if it happens to you - find a certified lymphedema therapist to help you.