Locating tumor blocks & question
We have had some recent discussion here on getting hold of our slides or blocks from our surgery. I have tried to search for the thread and coming up empty. Think it was buried in another topic.
If anyone has bookmarked it, please share. Thanks - it had info on a web site that gave instructions on how to store them.
Additionally, I was motivated by the postings about some hospitals discarding tissue blocks after 5 years. It is more than 5 years for me, so I mounted a search this morning. Hospital records (where the surgeries were performed) were no help, but suggested the lab. There has been a change in the lab, but the old one still exists. Turns out they are the keepers of the tissue blocks and slides. The woman said according to her computer they had three sets for me from biopsy and the surgeries.
BUT - she said that legally these tissue samples are the property of the lab. Upon my query as to how long they keep these samples, she said their protocol is TEN years. Whew! That was good news to me.
In order for me to try and take possession of these slides and blocks, I am to write a note explaining my kind of cancer, that I have had disease progression, been treated and are in a group on the forefront of new drugs and vaccines. She felt that the possible future need for further testing to qualify for a life-saving drug or trial should be reason enough to get them released.
We will see, and I will post on how this goes.
__________________
"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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