HER2 Support Group Forums - View Single Post - Anyone with brain met/necrosis surgically removed

StephN · 11-02-2009, 11:23 PM

Dear Darita -
A few of us lucky ladies here have had a suspicious or necrotic old tumor bed excised by open surgery. Mine was in my left cerebellum. It was not a difficult surgery to tolerate or very painful at all.

The main thing is how they have to get into the skull. Some areas they can just remove a piece of the bone and then put it back or cover it with another material. In my case the cerebellum is covered by a more brittle area at the back of the skull. It comes apart in pieces and leaves a depression when the bone is not able to be replaced.

This is more cosmetic and is not harmful or noticeable when my hair is full or longer.

Since you are having the symptoms, it is best to get that area removed and get off the decadron. It is not a difficult recovery and I had virtually no pain. Just needed a special pillow with a sort of horseshoe shape to hold my head so the incision was not pressed on.

Let us know how it goes. You will have to have the back of your head shaved, but I left the top and sides long enough to look ok with a beret or scarf till the back grew out.

11-02-2009, 11:23 PM	#2
StephN Senior Member Join Date: Nov 2004 Location: Misty woods of WA State Posts: 4,128	Re: Anyone with brain met/necrosis surgically removed Dear Darita - A few of us lucky ladies here have had a suspicious or necrotic old tumor bed excised by open surgery. Mine was in my left cerebellum. It was not a difficult surgery to tolerate or very painful at all. The main thing is how they have to get into the skull. Some areas they can just remove a piece of the bone and then put it back or cover it with another material. In my case the cerebellum is covered by a more brittle area at the back of the skull. It comes apart in pieces and leaves a depression when the bone is not able to be replaced. This is more cosmetic and is not harmful or noticeable when my hair is full or longer. Since you are having the symptoms, it is best to get that area removed and get off the decadron. It is not a difficult recovery and I had virtually no pain. Just needed a special pillow with a sort of horseshoe shape to hold my head so the incision was not pressed on. Let us know how it goes. You will have to have the back of your head shaved, but I left the top and sides long enough to look ok with a beret or scarf till the back grew out. __________________ "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.