HER2+ & Brain MRIs: wait for symptoms or regular scans?

Eleanor_W

Hello! I'm wondering what other metastasic HER2 positive women have decided to do re: brain MRIs? Do you wait for symptoms of brain metastasis or do you ask for scanning every so often to catch any possible spread to the brain as early as possible?

The docs I've talked to say that the standard is to wait for symptoms, but I'm having a hard time figuring out why given the higher likelihood of brain mets with HER2+ stage IV & diminished SE with earlier treatment. Is there any downside to scanning, say, once a year?

Thanks in advance for your thoughts!

Eleanor_W

Hello! I'm wondering how other Stage IV HER2 positive women handle the higher likelihood of brain mets. Do you ask for regular brain MRIs (to catch any brain involvement as early as possible) or are you waiting for symptoms to appear (with the hope, of course, that they do not).

My MO told me the standard is to wait for symptoms, but I'm not sure I completely understand why. Are there any downsides (besides the cost & any possible scanxiety) to doing a brain MRI say, once a year to catch an early spread to the brain?

Thanks in advance for your thoughts!

illimae

My MO warned me early on but yes, the standard is to wait. I ended up having an unrelated tension headache but the MRI results were 5 tiny lesions, to small to cause any symptoms at all and it is believed that the cells headed up there between my initial brain MRI and the start of chemo. Now, of course,I am monitored on a schedule but wouldn’t have minded an annual brain MRI, if it was proposed.

Eleanor_W

thank you for responding, @illiemae. I'm glad they caught them early.

Any other HER2 stage IV people have a strategy / opinions re: the possible downsides for asking for semi-regular testing? Is there a scientific reason (rather than a cost-based reason) to wait for symptoms to appear prior to scanning?

Lauriesh

I think waiting for symptoms is cost based. The earlier you catch brain mets, the better. I would say I was having headaches in order to get scans. About once every year Or so. Now, I have been Ned for awhile and I will wait until I

have symptoms as I hate having the scan. I remember reading a study that said brain mets are likely to happen the first 2 years after being diagnosed, so as time goes on, I haven’t been as concerned about them.