i have heard several people here say that they have been monitored for brain mets without symptoms. is that something that is recommended for ALL her2neu positive patients?? OR JUST stage IV her2neu positive patients? and if a scan can show nothing one month and a tumor the next, what is the point? please shed some light. thank you.

Hi Meridith
Since I am new to all of this, I am may not have much to add. I will say that following endometrial cancer 2 years ago, I went on estrogen replacement therapy, (it had been condsidered OK to do so) I am now 60 years old, and it was in January of 2004 that I went on a high dose of estrogen. My body seemed to just slurp it up. Then I went on a gel of testastorne applied to the arm. I will tell you that although it could have been a placebo affect, it was wonderful! I felt like a teenager again. I felt totally sexy! I had to cut down that amount as it was an overdose :-(

Then along came breast cancer and I gave all of that up. Since I am at the beginnig of that journey, I can't comment further except that I am in your shoes of being ER, PR negative and am interested in learning more about hormones and breast cancer for this type of turmor.

Janet/FL

Hello, and sorry for the problems posting. The above post, of course, didn't belong here. I have had trouble with this site and it seemed to crash my computer twice.
Janet/FL

To Janet,

We had problems over the holiday with one of the servers. It was not your pc.

Regards
Joe

Women who are stage IV should have routine brain MRI's. When diagnosed early, brain mets are easily treatable with Gamma Knife or WBR. It is when they get too large that they may require an operation.

Warmest Regards
Joe

I have had 2 Brain MRI's since becoming Stage 4 in 2001; the first MRI was ordered because of an unusual pattern of headaches. At that time I was advised that MRI's are not generally ordered as a matter of course even in Stage 4 disease; the usual practice is to wait for symptoms. However, my onc said he would also consider my level of concern in deciding whether to order them.
The second MRI was this past spring when I had a recurrence of mets, and even though I had no symptoms my onc felt it advisable to include the MRI along with the other re-staging scans. We also talked about several women on this site discovering mets from routine scans, without symptoms, and decided we felt it would be better to know sooner rather that later. As Joe points out, they are easier to treat when caught early.
Both brain MRI's were clear, and I think I'll be able to get them annually now, as my onc is very good about hearing my concerns.

Stage IV women should be able to get routine brain MRI's, but it's not always standard practice so some of us have had to push for them. I think earlier stage women probably have to wait for symptoms to develop, but be sure and ask for one whenever there are unusual headaches and vision or balance problems.

Love, Lolly

Christine wrote the following email to the National Comprehensive Cancer Network, which sets treatment guidelines for oncologists:


Dear Ms. McClure,

I met one of your representatives at SABCS in December and discussed a emerging problem concerning metastatic brain tumors. I am the Director of an online support group for women who overexpress the HER2/neu gene at: www.her2support.org As can be expected, many of our members are already at stage IV. Recently, we have been emphasizing that all stage IV metastatic breast cancer survivors should ask their oncologists to request a brain MRI whether they have symptoms or not !!


We feel that this is important for the following reasons:


1. 30% of all metastatic breast cancer patients will eventually be diagnosed with metastatic brain tumors.

2. 30% of these patients will never show symptoms until the tumors are very enlarged.

3. The use of Herceptin among our members is considerably lengthening their time to progression and in many cases their primary cancer is no longer evident. Herceptin does not cross the blood brain barrier.


In 2004, we bought these facts to the attention of our members. As a result, eight members who showed no prior symptoms of brain tumors received brain MRI's which revealed several small tumors. They were all treated with whole brain radiation and /or Gamma Knife and with the exception of one member are showing progress on their follow up MRI's. I was diagnosed in 1999, with 3 brain metastasis. I initially had Gamma Knife surgery in August 1999, but a follow up brain MRI showed numerous small lesions. I then had whole brain radiation in March of 2000 and had another recurrence in October 2002, which was again treated with Gamma Knife. All of my follow up MRI's to date have been negative.


I believe that the positive results of our members and my own experience shows that early diagnosis and treatment is highly successful.


The major problem is that most insurance companies will not authorize brain MRI's in the absence of symptoms because the NCCN does not include them in their treatment guidelines. On behalf of the members of the HER2 Support Group, I would like to request that guidelines to be reconsidered to allow routine brain MRI's for all stage IV metastatic breast cancer patients even with the absence of symptoms.



Please advise,

Warmest Regards,


Christine H. Druther MSPH
Executive Director
HER2 Support Group Org
6973 Mimosa Drive
Carlsbad, CA 92009-5156



Tele: 760-602-9178
Fax: 760-602-9153
Email: Christine@her2support.org

GREAT letter. Joe, Thanks for posting this one. I know we spoke with a number of people about the need for monitoring for brain mets while in San Antonio.
I am about to have my third brain MRI next week. My first was ordered as part of my restaging three years ago - it was clear. My second was last year because I have some numbness in my right arm (surgery side) that was not normal for me. ALso a clear scan. I am having my third one as a routine without having to report symptoms because my med onc is "with the program" of better monitoring for his stage IV patients. It is on the agenda along with the other CT and bone scans. He also knows that tumor markers are not the only indicator of disease returning and wants to cover every base, which is fine with me.
My insurance will cover.

Thank you, Christine, for continuing to do your best to make a difference in treatment for everyone.

It is very frustrating to be one of a large subset of the total bc population like HER2+, and to continually have individual specialists in the field of cancer emphasize how serious HER2+ is and how important it is to have more and more toxic treatment to deal with it, all the while seeing them avoid coming to any meaningful consensus about early detection for it, or even about standard treatment for it.

AlaskaAngel