WBR no longer necessary first step with Brain Mets

[IVW]

I think that if you have several brain mets you still need WBR. I had three mets, two in one side and one in the other side of my brain. I did whole brain radiation first. Then 3 months later, I chose to do stereotactic radiosurgery ( same idea as gamma knife) on the remnants of the bigger one. That was last year. I have been free of brain mets for almost a year.

Isabelle

[Esther]

Different dr's will different opinions of course, but Dr. Hodgesen clearly communicated to me that WBR is not his first choice of treatment, even with 3 to 4 lesions on the brain.

WBR can have serious side effects, and he felt that Gamma Knife as a first line of treatment is better. He has a track record of over 90% success rates with BC brain mets not needing further treatment after Gamma Knife.

WBR can be given at any time after Gamma Knife, so it still leaves WBR as an option after Gamma Knife if it is needed. He also stated that WBR prior to Gamma Knife or cyberknife was the old standard of treatment protocol, and is no longer considered standard of treatment by many locations.

[Barbara H.]

Hi Esther,
First of all I want to wish you well. Secondly, you were right to go for a second/third opinion. The Dana Farber no longer recommends using WBR for brain mets that can be treated with surgery or sterotactic radiation.
It's just too bad that you can't get this treated this week and be done with it. You will not enjoy being on the Decadron after a while.
In any case, enjoy your ski vacation.
Barbara

[Barbara]

Esther:

I am glad you caught the brain met early. You are apparently in touch with your body. Were your cancer markers also going up? I hope all goes well for you and that you knock this brain met out for good.

Barbara

[Esther]

Cancer markers have always been accurate for me with the liver mets, but they did not go up for the brain lesion. That may have been because it was so small.

Don't really know for sure. You do have to be listening to your body in order to catch the subtle signals it sends. Mine were more like whispers, just glad I listened.

Gosh, Esther you are the forth person that, I have met in person, off the board that have brain mets! Sorry, to hear this. I am glad that you are posting on the latest info for the rest of us. Steph did last year. I am following all of this in case I ever need it. Wishing you well. Soon you should be NED again and enjoying the summer on that motorcycle!! hugs, Sandy

[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.