HER2 Support Group Forums - View Single Post - for those with axillary web syndrome, here is an article on its incidence

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.

03-25-2009, 06:41 PM	#8
chicagoetc Senior Member Join Date: Sep 2007 Location: Near Chicago Posts: 196	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. __________________ Diagnosed: 7/13/07 (or 7/7/07) Surgery: 8/15/07 Modified Radical One Side with Lymph Node Dissection Pathology Report: ER/PR-, HER2+ with FISH at 8.4 copies, Grade 3, Stage IIIa, 3.2 cm tumor plus 4/19 positive lymph nodes Portacath: 9/7/07 Chemo: 9/14/07 with AC (every three weeks) for four rounds Physical Therapy for ROM Loss / "Cording" (but not Lymphodema) Taxol + Herceptin weekly (started 12/2007 with 8 of 12 Taxol) Radiation: (28 rads from 3/07 to 4/07) Reconstruction (silicone implant) Herceptin done (10/08) Cognitive Remediation (11/08 - 12/08) Lymphedema Diagnosed 5/10/10 (almost 3 years post cancer diagnosis) Lymphedema Rehab 9/10/10 - 11/10/10 Six years NED...7/7/2013!