How to watch for brain mets?

Val Pfeiffer · 03-11-2006, 04:24 PM

hi everyone...
I recall reading bits and pieces about brain mets on this board since my diagnosis in November 2004 (see my website below for my diagnosis details). At the time that I read information about this topic, I was more worried about other issues. Now I want to go back and know more about what may or may not be happening in my head...

What should I know about keeping an eye out for brain mets? What are the symptoms? Should I be asking for tests to monitor whether or not I have them?

I feel like I am in pretty good shape with regard to the rest of my body, since I am on maintenance Herceptin until at least September. But I worry about the body part that the chemo can't reach :-)

thanks!
Val
http://journals.aol.com/valleygirlvn...CancerUpdates/

Becky · 03-11-2006, 07:33 PM

Although I have not had brain mets nor don't plan on it, blurry vision, headaches (especially at the temples and front), coordination problems, weakness on one side of the body or in a limb. All very much like a stroke. However, there can also be no symptoms until things get very bad. That is why this site recommends brain MRIs every 6 months for gals with mets and at least once a year for all others.

I just got my yearly brain MRI due to this fact on Feb 20. It doesn't take much time. I didn't have a problem with my onc ordering it even though I am only Stage 2A. I am still on my year of Herceptin (ending in mid June).

A scan is the only sure way.

Best regards

Becky

jsattaw · 03-11-2006, 07:36 PM

I just asked my oncologist about a baseline brain MRI and he agreed to do some reading but didn't think it was warranted at this time in my case. I am considered Stage II due to a recurrence but am still node negative with no mets. I didn't push him now -- but would welcome others' thoughts on this subject too.

Thanks.

Jill

madubois63 · 03-11-2006, 07:57 PM

I have been getting a brain MRI every six months since my relapse - AT MY REQUEST. My family knows to watch me for slurring of the words and shuffling of my feet. Besides headaches, watch for eye problems (floaters, flashes).

Jill - If it makes you feel better, than get the MRI. You are the boss and you get the final say!! I have said it many times before, and I will say it again - YOU are paying your doctor. YOU have hired them. YOU are the boss. Maryann & Kenny (Mkkrny) wish that she was getting the MRI's. Hindsight...

saleboat · 03-11-2006, 08:43 PM

Val--

I recently brought this up with my Onc as well. She said that it had recently been the topic of hot conversation at their weekly conference, but for now, it is not protocol for early-stage Her2+ patients at my treatment center. However, I had the sense that if I pushed, my Onc would have sent me for one. (I was staged at IIIC). For now, while I'm finishing my year of Herceptin, I'm not pushing for it (I know this doesn't make a lot of sense, given that Herceptin does not cross the bb) but I'm in the mode of not borrowing trouble. I don't have any symptoms, and in genral, feel as though my care providers are extremely thoughtful and rigorous in their decision making (I'm treated at Sloan-Kettering).

BUT, if it is going to set your mind at ease, I hope you can get one.

Good luck,
Jen

kristen · 03-12-2006, 02:49 AM

Val,

This is my 2 cents.... My question was has anyone since the start of the study gotten brain mets that by passed the body and went straight to the brain? The gal I asked knew of one person. It was 2 years out of dx. with no symptoms. (if I remember riight) I have been fortunate to have been under the care of a nuerologist for headaches and restless leg for 8 years so when this popped up it was her idea to do MRI's every 6 months. On St. Paddy's day it will be my last 6 month check up and we will go to once a year. (NED 2.5 yrs) I feel with the studies that are coming out that I have a pretty good chance of this not coming back. But I will stay vigilant and I know my doc, will run the test if we think something is wrong. It has given me peace of mind. I also was a stage II (I think). Good Luck with your research and I plan on taking that study that was posted in to my neurologist that says how herceptin can keep it al bay longer....

tousled1 · 03-12-2006, 06:06 AM

I am stage III and have had what I will call 2 "episodes." My head starts to feel funny and then I seem to go into a "twilight zone." When it's over I feel fine. My oncologist has scheduled an appointment with a neurologist for Tuesday and has requested that I get an MRI. I'm keeping my fingers crossed that everything will be ok.