How to watch for brain mets?

[AlaskaAngel]

Hi

I very much appreciate your efforts to encourage me to get an MRI because I know your concern is genuine and based on real experience. Recent info has been posted at this site showing that oncs may be starting to realize that with HER2's in particular the cancer may go to the brain, and it takes too long to simply wait for symptoms.

The vast majority of the time vertigo is just vertigo. So where does that leave HER2's who are early stage, "over 2 years out and too safe" to even justify Herceptin?

If I am in denial, I really don't think I am, and I am considering getting an MRI of the brain. My previous post just tells my own experience and understanding that there are really no meaningful guidelines for early stage bc and especially for those like me, who did not get the benefit of either the newer chemos or dose-dense or even traztuzumab (although traztuzumab likely wouldn't help a lot to avoid brain mets). I have one of the best internists on earth watching over me, and yet the "state of the art" leaves both of us trying to manage me with simple manual in-office tests, occasional markers, and intuition.

Even just speaking in terms of investment, considering just how much time, money and effort has already been spent on me to deal with cancer in the first place, a brain MRI may make good sense. But then are we saying that there should be a recognized guideline that all HER2+++'s, with or without symptoms, NED or not, should have an MRI every year, as someone posted above?

Again, thank you for your thoughtfulness.

AlaskaAngel

Dear Alaska Angel, Please get an mri. See, I have a 'good' oncologist too, but she does not do mri's on her2's. I think that is changing. by time i was diagnosed i had multiple brain tumors, had surgury because a tumor was pressing on a nerve causing 'klutziness', please get an mri. yes, falling would not indicate much for most people, but you are in a different catagory. Face up to it. we want to be well so bad. I looked in the mirror and saw my face twitching and i had a moment of truth. I had headaches, klutziness, i couldn'd hold a fork, i chalked it up to alot of things, but in fact i thought deep down inside that it could be a brain tumor. Also, your options are better if you don't let it get out of control.

[mts]

I agree there is no official "concensus" regarding what to do for Stage I...
Yet this website is enough concensus for me. We all have a common denominator regardless of our Stages. With the unpredictability of Her2 and cancer itself, I see no reason why anyone would not take advantage of the technology available for our treatment. Even if someone is NED, it makes sense to follow-up with whatever regimen of tests necessary. All us Stage I and II fought for Herceptin when we were not sure of its effects on non-metastatic bc. Risking whatever we needed to in order to stay on the drug...
In may case, after all the nasty chemo, surgery and radiation and reading the posts on this site -I decided to get a brain MRI just to have a baseline (while I knew it was going to be clean). Kind of like the PET - a baseline is helpful IF mets do decide to invade. To date, as most of us have- I now have a bone scan, PET , CT of chest, CT of brain and breast MRI's. All are clean, and all are my baselines. If I ever need them for future reference- there they are!
Plus- I sure do sleep better knowing that I do not have cancer ANYWHERE!

Get the brain scan!

Maria

[StephN]

Just think that in my case, I was off all chemos and only on Herceptin for almost 2 years when my brain mets got active. I had 2 clean scans the previous 2 years during and after my mets. Those cells could have been just dormant for up to 3 years or more in my brain before getting active and partying hearty!
They could have gotten there even before/during my adjuvent treatment (which was considered aggressive)! Who knows?? I was node positive and high grade, but even with node negative, there CAN be micromets that get out and are not caught. They are SO tiny (remember - 1 million cells on the head of a pin) that there is no way to tell how "clean" we are.
The serum tests are good and I hope they will be approved soon for those without mets.
We need a way for tracking our cancer at a more molecular level then waiting for a tumor of 1/8 inch plus to show on a PET or other scans. And HER2 is something they are finding easy to see in our blood.

Otherwise we have to go with what we now have to achieve the peace of mind we need to get our lives back. My 2 cents worth!

[tousled1]

I have an MRI (with and without contrast) for tomorrow, and an EEG for next week. I am stage III HER+++, axillary nodes positive. I am undergoing neoadjunct chemo. Finished 4 rounds A/C and just started 4 rounds of Taxatore today. I have had a couple episodes where I seem to go into a "twighlight." Mentioned to my oncologist Monday and she immediately got me appointments for the MRI and EEG. I'm hoping that there are no mets and that it is just due to stress. We'll just have to wait and see. I do agree with all the other posts that if you are having any problems with sight, dizziness, etc. you should definitely get an MRI. Better safe than sorry.

[Joe]

A study released in San Antonio in December 2004. It stated that 10% of women who have bc and are being treated with Herceptin have brain mets as their INITIALmetathesis.

"Other investigators analyzed the occurrence of CNS metastasis as the first site of progression in the pivotal trial as well as other studies of first-line trastuzumab-based treatment for advanced breast cancer.[5] Isolated CNS metastasis occurred in roughly 10% of patients receiving first-line trastuzumab-based therapy. Progression in the CNS tended to occur later than progression at other sites of disease. Treatment with trastuzumab did not in and of itself increase the risk of CNS disease; in fact, it appeared protective during the first 7 months of therapy. Finally, comparing HER2 tumors positive by fluorescence in situ hybridization (FISH) vs those negative by FISH suggested that FISH-positive tumors have a predisposition for CNS recurrence from the time of primary breast cancer diagnosis."


Regards
Joe

[Sherryg683]

I had a brain scan done on my original diagnosis in December and then again 2 weeks ago. I was having terrible headaches that wouldn't go away. My Oncologist said he figured they were just sinuses but knew that I wouldn't be at ease till I got another scan. My scan came out clean and I was able to put that to rest for the time being. It was a sinus infection. Since I do have mets, I will be getting brain scans every 3 to 6 months. They only take about 15 minutes and are worth the peace of mind, also I figure if something does pop up, I want to catch it early...sherryg683