Dear Leslie -
I GET what you are saying about warning others off of just believing the first opinion that you have mets.
Normally there is not a question, but your liver seems to have had an unusual look about it. Funny that the PET in Feb showed those small spots and they were not on the latest scan. Or did I misunderstand that they were NOT there OR just did not "light up?" You were on a strong chemo in between those PET scans so that could have had a theraputic effect and knocked them out.
The other point I would make is that you could have been a candidate for NEOadjuvent chemo - to shrink those tumors and go after any stray cells that may have gotten in your blood steam. Normally neoadjuvent is done to minimize the risks from mast or get the patient into a category where a lumpectomy is successful.
I am wondering if you can have an ultrasound or some test to measure just what IS left in your breast. If the liver spots responded to the chemos, perhaps the breast tumors have also responded. I am sure Medicaid would not want to pay for a breast MRI, but it is probably warrented it you case.
All the best!
P.S. For followup I was on a 3-month program of tumor markers, onc visits, chest x-ray and bone density scan. First 3 month tests showed elevated markers and extensive liver mets. I had a very small primary tumor, but very high grade and in nodes.
__________________
"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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