How to watch for brain mets?

[Val Pfeiffer]

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]

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]

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]

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]

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]

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]

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.

[Val Pfeiffer]

hey everyone--
I understand Kristen's point...that if there are no mets in other places that it's not likely that they have traveled to the brain.

But consider this...if a patient has stage III BC with strong node involvement, that makes it likely that there were cells that traveled elsewhere in the body. In my case, I had 3 months of neo-adjuveant Herceptin/Taxol/Carboplatin, and after surgery three more months of the same. After radiation I started on Herceptin by itself and will continue for one year. So I feel confident that my course of treatment will have taken care of any rogue cells floating around trying to cause trouble in my body

But...if there were cells that got past the nodes and were traveling around my body, it's very possible that they also traveled to my brain. And all this great treatment I have received won't have addressed those cells, which could be having a field day up there in my brain. It seems silly to wait until symptoms crop up to know if the cancer has spread to the brain.

I agree that it's not likely that brain mets will crop up if there aren't any other mets found, but now that treatment has gotten so aggressive in cases like ours, the cells probably don't have a chance to metastisize elsewhere. I am certain that if I hadn't received aggressive treatment that I would be stage IV by now.

I am not trying to be paranoid, I just am thinking realistically, since I firmly believe that it's up to each of us to ask our own questions. It sounds like there are many oncologists who don't see the need for this, but given the argument I make above, how do you think they can disagree?

:-)
Val
http://journals.aol.com/valleygirlvn...CancerUpdates/

[AlaskaAngel]

I am Stage 1 (T1c), 55, and NED. Over a year after treatment I had a week of vertigo problems with spinning head and nausea. However, there was also a new sensation where whenever I bent over to try to reach over and clip back the salmonberry bushes it felt like my "gyroscope" completely failed and I could not tell up from down at all, so I was constantly falling all over the place in the garden and in the house no matter how hard I tried to right myself. My internist did all the in-office basic neurologic testing and maneuvers, and together we decided to just monitor it without any more sophisticated testing. He's very conscientious with me and it probably was a little hard for him not to just order an MRI. I don't really know what caused the problem.

In the last 2 weeks I've had a problem with balance, with the sense of continually ending up heading to the left when I'm trying to go straight ahead, so I have to aim to the right to get where I'm trying to go. I rarely get headaches but have had them this week continuously. My internist checked me out again and we talked about MRI, but I have put it off for now. The sense of loss of balance has cleared up and finally with an aspirin last night the headaches have too.

There is no easy way for us to tell whether to get the MRI or not. I'm not at all afraid of results, but I'm not convinced I really need one. I would like to see better information provided to us and our PCPs about this by oncologists.

AlaskaAngel

Please get an MRI.

denial won't make them go away - early treatment can - please an MRI now - I had less symptoms than what you are describing and ended up with mets on both sides of my brain......

If you have had node involvement you are correct that a stray bugger has been camped out up there because bc is systemic. I know from experience. Please have a brain scan. Anyone else who is dizzy, having eye problems, balance problems, being a klutz, headaches (and it can be only once) should not try and rationlize what it is. Denial won't help treat it but early detection will. Please get an MRI.

[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