brain mets - 2nd mri not good

[Guest]

Hi - I had stereotatic surgery (on a LINAC machine) in August for a solitary brain met. I've had mri's in Oct (it appeared to be a bit smaller) and then again this week (Dec). This time the docs read the mri and said the met appeared a little bit (millimeters) bigger. I do have some edema, too.

So they gave me some choices:
1. Do Gamma knife in the area that appears to be growing - to try and knock out the met.

2. Take temodar - and go after it chemically. I'd probably have to stop the tasxotere-carbo-herceptin regime I also just started to deal with some lymph nodes in my abdomen that had been stable.


Are there other things I should be thinking about? Places to go for a consult? I'm plannig to do a consult with doctors at the Mayo clinic.

I'm feeling mighty scared - I just assumed the stereotactic surgery would work. help and thanks.

[Unregistered]

You didn't mention the size of the tumor but if it is a solitary lesion, why can't they just remove it with surgery? Is the location a tricky one? Would you get a second opinion to be sure it is tumor and not radiation damage?

I had rads to a brain met 19 months ago. 7 months ago it started to grow again and I have had scan after scan after scan. They still can't decide if it is tumor or something called radiation necrosis but I had a test called an MRS ( magnetic resonance spectroscopy ) that measure chemical levels in the brain and this seems to indicate it is not tumor so we are all just "watching" it.

There is another support board called the cyberknife patient support group that has doctors on it who are wonderful and answer questions. It has been very helpful to me.

Best of luck, don't be scared, just think about another opinion from someone who does a LOT of brain lesions.

[Unregistered]

Do you happen to have the Web address for the cyberknife support group? It might be needed by some of us someday and it would be nice to be able to find it easily. Thanks.

[Joe]

A second opinion is definately in order, your consultation with the people at Mayo is a wise decision. Christine, the founder of this website, had a similar situation about 5 years ago, here is her story: http://www.her2support.org/story2.htm

Neucrosis means that the tumor is dying, which may be happening in your situation. Send your phone number to: joe@her2support.org , I will have Christine call you as she is very knowledgeable in this area.

Warmest Regards
Joe

[Annemarie]

Joe and Christine always give such great advice! I had gamma knife 14 mos. ago. Recent brain MRI's have showed what could be a reoccurant brain tumor in the same area. The orginal brain met was 7mm. Additional tests indicate that it is just scar tissue. Because the Drs. are not certain I now go every 8 weeks for brain MRI's. My last MRI this past week showed less edema so my neurosurgeon was very happy!

[Unregistered]

The web address for the cyberknife support group is

http://www.cyberknifesupport.org/

You go to the message boards, pick out the BRAIN topic and you can post after you have registered. There are physicians who specialize in this who can help answer questions.