Skin mets - IMPORTANT new info
Dear Group -
Here is one more thing that most of us pay little attention to as we have enough else!
I was under the probably mistaken impression that skin mets goes along usually with inflammatory BC.
A good friend just informed me that she now has skin mets. Her original dx was INSITU. She has pretty severe lymphedema in one arm and has to wrap it. She said that at night there was one area on her upper arm that was a little painful and noticed a very small bump that was getting a little higher, but was very small at less than 1/8th inch. And the color was not much darker than her normal skin. She showed it to her doctor as she was being cautious about having anything done on her lymphedema arm. She was sent on to the dermatologist who removed it and then wanted more tissue.
It was determined to be BREAST cancer in her skin. She was dx'd in 1995 and has fought mets, but was told to be NED lately. Her tumor markers were all very good and nothing on last PET. They have gone back and taken a lot more skin and don't have a clean margin so she now needs radiation on her arm.
I went back and found a note from SandyH (who fought her skin mets on chest for over 5 years) from last spring when she was being restaged after Tykerb. Her quote:
"Nothing ever shows on the tumor markers because its not in the organs. I will ask about the HER2 serum but doubt if that is an option but always good to ask. My lung is full again so that means another draw tomorrow before having the port moved if I even have the port done tomorrow."
The message for us is that if the darn cancer wants to grow it will find a way - and a very sneaky one at that. My friend's skin mets does not look like the rashy appearance that we have had our members describe their skin mets. She had only the one little "pimple" on the surface with the rest in a wide area.
Now she is trying to find out if it is HER2 positive like some of her mets have been before. The last ones were negative so she has been off Herceptin for over a year.
__________________
"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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