WBR no longer necessary first step with Brain Mets

[Sandy H]

Gosh, Esther you are the forth one who I have met, in person, from this board with brain mets!! I am sorry to hear this. Thanks for keeping us posted on the new info. I know Steph did last year. I am following this closely in case I ever need to use it. I wish you well and soon you will be NED and will be enjoying the summer on your motorcycle. hugs, Sandy

[Barbara H.]

Here is my story. I had a craniotomy for a 3 cm met in my pre-frontal cortex in May, 2004. Dr. Black at the Brighham was away at the time so I decided to have Dr. Wu at the BI remove it. I followed up with sterotactic surgery to mop up what may have been left. At that time the radiologists recommended WBR to give me a better chance of targeting any mets that could develop in the future. I decided not to do it because of the possible long term side effects, and I wanted to continue teaching third grade. Later when I had my follow up at the brain tumor clinic at the BI I learned that they were no longer recommending it for everyone, especially younger people. I am not that young. When I discussed it with my oncologist, Dr. Parker, at the Dana Farber, he also said that Dana Farber no longer supports it for everyone. This past November I had another scare. My routine MRI showed probable recurrent disease to the same spot. This time Dr. Peter Black from the Brigham did the surgery. It turned out to be radiation necrosis. I think each case is different. That's why the physicians in the brain tumor clinic review each case. I think the new standard is that WBR used to be always given and now it is no longer routinely given or recommended.
Best wishes,
Barbara H.

[StephN]

Thanks for the story and the confirmation about holding out WBR for later if there are only very few mets that can otherwise be dealt with.

On the icons, you are using the "thumbs down" when I think you mean the "question mark." Question mark is in the blue circle below the winking smile in a blue circle.

I was also glad to hear that you only had radiation necrosis and not new tumor growth. I may face the same question.

[Esther]

Thanks all, I posted this thread so that people would know that there are now differing viewpoints on this issue. It is important to be fully informed before deciding on your course of treatment.

I see Dr. Black at Cedars Sinai today, and will make my final treatment decision after meeting with him.

I feel good about making all the research, this will be my 3rd opinion, and feel like I will be prepared to decide what is best for me.