PR-, ER+, HER2+. Brain MRI's

nowaldron

Happy Valentines Day Everyone!

Here I am back again with another question. I just celebrated my 5 year cancerversary a week ago, yay! I was diagnosed in February of 2016 de novo HER2+, ER+ metastatic breast cancer (scull, ribs, multiple vertebrae, sacrum, femur and liver), and have always been worried about brain mets.

I posted a couple of weeks ago and received a very helpful reply, but I can't find that reply now so here I am again.

As we HER2+ gals may know, we have a 50 percent chance of developing brain mets. This has always been my main concern as I am a college professor and my brain (such as it is LOL) is my livelihood. Given the stats, I wonder if any of my fellow warriors have brain MRI's on a regular basis or do you wait for a symptom? I did have a brain MRI 18 months ago and all was fine. Lately, I have been having some unusual symptoms -- stuttering or stammering over my words and more significant word-finding issues/spelling (I am 59 yrs old). Though my MO is mostly great, after more than four years of being stable, few regular tests are conducted on me anymore. I get scanned (hips, abdomen, pelvis) every six months, no CEA blood work in several years, etc.

In my last scan, my lungs showed "diffuse bronchial wall thickening" which my MO told me not to worry about -- even though I have been coughing for months and short of breath on exertion. Also, in the past few weeks, the stuttering/stammering/word finding issues that I mentioned above.

Does anyone have any thoughts? Should I request another MRI? Should I get a second opinion on the bronchial wall thickening? I live in Boston so I do have some good options for a second opinion. I kind of feel guilty about doing that though, sort of like going behind the back of my MO, which I think is weird in itself.

I honestly don't worry very much anymore as cancer has become my life's partner, but I am hesitant to contact my MO for these symptoms. To be frank, sometimes I feel as though now that I am stable (4.5 years), she discounts my concerns. She is great and was so comforting and took very good care of me at the beginning. Now, however, I sometimes feel like she has just put me out there in the world and expects me to remain stable forever.

Sorry, I know I am droning on, but I would appreciate anyone's thoughts on this. Do you think my concerns re: lungs/brain are valid or is it just anxiety due to my recent cancerversary?

Well, thanks for reading and I hope everyone has a Happy Valentines Day xoxo

Nancy

Elderberry

Nowaldron: Don't feel like your are being unfaithful and somehow cheating on your MO but have a serious chat with your MO first. Ask why your lungs would have "wall thickening" and why it is not a matter of concern. Searching for words....okay...maybe it is age related if it is "what was the name of that actor who played, y'know, that weird detective in that show..." but looking for words like "can opener" is a whole other issue. I told my MO about a three-weeks long headache that then resolved itself. He asked how bad it was. Not bad, just chronic and annoying. He suggested I monitor it but did ask if I was having vision or balance problems. He is pretty good about tests if he thinks it is warranted. I have asked him how would I know if I had something wrong with my brain. I am a product of the Sixties (I am 71) My husband once joked about himself "If LSD doesn't cause brain damage then why did I become an Insurance Adjuster?" I digress

Stable at 4.5 years is great and I suppose it is encouraging if your MO thinks it will stay that way -- BUT - there is always a but. You have to tell her your concerns. If she lets you down then tell her that you feel a second opinion might be in order. Like a brain MR

We have to be advocates for ourselves.

Happy Valentine's Day to all. Chocolate is on the menu today.

Anonymous

Happy Valentines Day! No routine brain MRIs for me but I’ve had two, one at diagnosis because I insisted on it and another about 14 months later due to severe dizziness. Both found nothing abnormal in my brain.

Some forgetfulness does come with age and I always say that being on the internet has made my once perfect ability to spell not-so-perfect. But if it seems like something odd is happening to you, there is nothing wrong with asking for a brain MRI and / or getting that second opinion. Trust your gut instincts!

I do think our being stable can make our doctors a little too comfortable sometimes. But don’t be afraid to push if that what it takes. Putting your mind at ease if nothing is found is just as important as being able to treat BM early if something is found.

Good luck

illimae

I would get one. Anytime symptoms appear, you have reason to be concerned, even if they’re minor. With brain mets, they are so much more successfully treated when small and HER2+, it’s definitely a risk. So, for piece of mind alone, I’d recommend the MRI.

Elderberry

Nancy: have you discussed an MRI yet? How are you doing?

nowaldron

Hi,

I'm sorry for not updating sooner, but the brain continues to be fine. Awaiting next set of scans in May...and so it goes.

Elderberry

Nancy: Good news so far? Keep us posted in May!!

Elderberry

Nancy: Keep us posted. So far, so good?