Brain mets first?

[KellyA]

I was just curious. I recently heard of a girl whose breast cancer spread to her brain first, before any organ or bone. That seemed very uncommon. Does anyone know how common this is? Sounds like a Her2 thing.

Love, Kelly

[Sheila]

Christine, our founder is a perfect example of this, and I believe there have been a few more. That is why Christine and Joe are so adamant about regular brain MRI's.

[caya]

Kelly,

I asked my onc. this very question about a month ago. He told me that Her 2+ BC is more likely to go to the brain than other types of BC, but highly unusual for that to be the first place for mets - usually the order is lungs, bones, organs, then brain last. Again, this is not written in stone, just what normally happens. In his practice, and he is one of the top breast oncs. in Canada, he told me he has had only 1 Her2+ patient have brain mets first.
He then explained that for me, being stage 1 and with other good prognostic factors, and Herceptin, I should not think about brain, or any other kind of mets, as he is working on an over 90% cure rate for me. So I am trying hard to focus on this and remember his words of wisdom. He's been right on target every step of the way so far.

All the best
caya

[tousled1]

As you cn see from my signature I developed lung mets and a single brain met almost at the same time. Who is to say that they both weren't there at the same time. I just happened to have the scans scheduled at different times.

[pattyz]

Similar to Kate, I was dx'd with brain mets with a brain MRi just two mos. after dx of mediastinal nodal mets, w/ uncomfirmed 'spot' on lung and pelvis.

The largest brain met was 1.5cm at scan, so I have always felt it was there for some while. The small amount of visual effects in one eye had been there for about 7 months... just very infrequent. It was this 'symptom' that when I finally reported it to my onc, he ordered the MRi.

In five yrs since Navelbine/Herceptin put my body NED, I've only had brain mets.

close but maybe 'no cigar' to your question.

pattyz

[Emmay]

My sister, who is Her2+ER-PR-, had a lumpectomy in 7/03, a local recurrence required a mastectomy in 2/04, after which she began Herceptin, which does not cross the blood/brain barrier. Since then the only sight of recurrence has been her brain, so the presumption is that Herceptin has been keeping the rest of her body clear.

[Ceesun]

Patty, What do you mean about the eye? Cathy Ceesun

[Erin]

Yes, I would like to know about the "eye" symptom as well.
Thanks

[Becky]

For Her2+ bc, the most common met site is the lung but 10% of the time, the first place to met is the brain.

[madubois63]

Occular changes are very important and NOT to be ignored!! My dear friend Maryann lost her battle to bc recently, and I blame the oncologist. She was complaining of eye problems and he ignored her. It took a few months for the onc to listen and order a brain MRI, but by then it was too later FOR HER. Her first sympton was trailing vision. She would walk out the front door and see the shoes by the door on the lawn a few seconds later. Then she sarted to get small headaches. I have been having "non-existant" headaches for some time now just so that I can have a brain MRI and the insurance will cover it (I didn't tell you that - lol). My onc knows the game and is very happy with that. Please, please, please have brain MRI's regularly!!!!

[pattyz]

Eye symptom for me: I had a peripheral vision half moon light show (the best I can explain it) OCCASIONALLY for those nine months or so. Just the left eye...where a 2nd small brain met was found in that area of brain.

Eye mets are also a possibility with visual symptoms!

Any visual thingie should be taken seriously if it lasts more than a few weeks......... I was 'fooled' because my episodes were spaced so far apart.

pattyz

[pattyz]

See my reply to ceesun please.
pattyz

[Mary Anne in TX]

Ok, I'm totally convinced to have a brain MRI in the next couple of months! I have had headaches along the base of my head in the back. I will "demand my rights" at the next onc meeting! He always agrees and I do want to be sure about those headaches. I've assumed they were from Herceptin or from being "mom" to an 8 year old (her birthday is tomorrow!)! You guys sure know how to get it said!!!!
Believing in NED for all, ma