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Had AWS myself
Dear Leslie -
Variations of this problem can occur at almost any stage of diagnosis AND treatment for breast cancer.
My AWS occurred after my excisional biopsy and lumpectomy with sentinal node biopsy. This was without any further node dissection - just a third biopsy as they kept missing my small (but very lethal) tumor. Somehow that brachyial nerve got bothered by that surgery, which was also on the right and affecting my right arm.
So when I went for my second opinion I LOVED the med onc and agreed to interview the surgeon he worked most with. That man was so careless when he examined my AWS area. When I asked him what he would do about it (as it was shown that my sentinal node was cancerous and the axilla would need to be done), he said, "Oh, just snip it!"
I said "thank you very much, I will get back to you if I need your services" and never saw him again. When going back to my original surgeon (a thoracic specialist) he said he would take the extra ten minutes to free up that nerve which runs through the axillary nodes area. That way I would have a still intact nerve, just badly bruised.
After performing the exercises for 3 months I had my full range of motion back. A TIP: I found that doing the exercises in the shower under very warm running water helped me progress faster. I also massaged in some cream for sore joints and tendons to help the area around the healing nerve.
Hope this helps. The main thing is that I wanted to have feeling at the back side of my arm and if that nerve had been severed it would never have been normal again. I know several women who say they don't have feeling at the back of their arm as the nerves were cut in the surgery.
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"When I hear music, I fear no danger. I am invulnerable. I see no foe. I am related to the earliest times, and to the latest." H.D. Thoreau
Live in the moment.
MY STORY SO FAR ~~~~
Found suspicious lump 9/2000
Lumpectomy, then node dissection and port placement
Stage IIB, 8 pos nodes of 18, Grade 3, ER & PR -
Adriamycin 12 weekly, taxotere 4 rounds
36 rads - very little burning
3 mos after rads liver full of tumors, Stage IV Jan 2002, one spot on sternum
Weekly Taxol, Navelbine, Herceptin for 27 rounds to NED!
2003 & 2004 no active disease - 3 weekly Herceptin + Zometa
Jan 2005 two mets to brain - Gamma Knife on Jan 18
All clear until treated cerebellum spot showing activity on Jan 2006 brain MRI & brain PET
Brain surgery on Feb 9, 2006 - no cancer, 100% radiation necrosis - tumor was still dying
Continue as NED while on Herceptin & quarterly Zometa
Fall-2006 - off Zometa - watching one small brain spot (scar?)
2007 - spot/scar in brain stable - finished anticoagulation therapy for clot along my port-a-catheter - 3 angioplasties to unblock vena cava
2008 - Brain and body still NED! Port removed and scans in Dec.
Dec 2008 - stop Herceptin - Vaccine Trial at U of W begun in Oct. of 2011
STILL NED everywhere in Feb 2014 - on wing & prayer
7/14 - Started twice yearly Zometa for my bones
Jan. 2015 checkup still shows NED
2015 Neuropathy in feet - otherwise all OK - still NED.
Same news for 2016 and all of 2017.
Nov of 2017 - had small skin cancer removed from my face. Will have Zometa end of Jan. 2018.
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