HER2 Support Group Forums - View Single Post

StephN · 06-30-2006, 10:13 PM

Thanks for the kind words of support, ladies.

My Gamma Knife was just 18months ago, so the normal window for necrosis is ending, but this is only for the typical appearance. One of the reasons for short-time frame followups with brain tumor patients is to watch for activity in the old tumor site as well as for new spots.
The activity in the old tumor sites could be EITHER tumor re-emerging OR radiation or necrosis as a result of surgery. Scar would not normally light up the same way.

There is a rather nasty thing called Space Occupying Necrosis, which does grow and take over a scar area or where healthy tissue might reappear. If what is lighting up turns out to be this beast, it is necessary that it be removed, as your normal tissue has to fight with this.

The U of W has a new MRI machine and I could see the difference from my last scan and the one yesterday as the computer has 2 screens and can call up the different scans for comparison with the same view. The new machine shows clearer images and they will have an even better one in a couple of months. With this new machine, I feel condfident that there were no small mets arriving.

But, again, this question is a common occurence with brain mets (or brain tumors in general). My rad onc did not seem worried as he said we already proved necrosis on the other old tumor site with the surgery in Feb. If the scan in 2 months shows much change than it will most likely get another shot in the Gamma Knife.
Barbara, I will send some very special thoughts to your brain tumor site - GO AWAY!

06-30-2006, 10:13 PM	#6
StephN Senior Member Join Date: Nov 2004 Location: Misty woods of WA State Posts: 4,128	Thanks for the kind words of support, ladies. My Gamma Knife was just 18months ago, so the normal window for necrosis is ending, but this is only for the typical appearance. One of the reasons for short-time frame followups with brain tumor patients is to watch for activity in the old tumor site as well as for new spots. The activity in the old tumor sites could be EITHER tumor re-emerging OR radiation or necrosis as a result of surgery. Scar would not normally light up the same way. There is a rather nasty thing called Space Occupying Necrosis, which does grow and take over a scar area or where healthy tissue might reappear. If what is lighting up turns out to be this beast, it is necessary that it be removed, as your normal tissue has to fight with this. The U of W has a new MRI machine and I could see the difference from my last scan and the one yesterday as the computer has 2 screens and can call up the different scans for comparison with the same view. The new machine shows clearer images and they will have an even better one in a couple of months. With this new machine, I feel condfident that there were no small mets arriving. But, again, this question is a common occurence with brain mets (or brain tumors in general). My rad onc did not seem worried as he said we already proved necrosis on the other old tumor site with the surgery in Feb. If the scan in 2 months shows much change than it will most likely get another shot in the Gamma Knife. Barbara, I will send some very special thoughts to your brain tumor site - GO AWAY! __________________ "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.