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