HER2 Support Group Forums - View Single Post - you are not going to like this--first evidence based guidelines 4 brain met treatment

Carolyns · 11-09-2009, 07:28 PM

Lani - You are right!

"Re: you are not going to like this--first evidence based guidelines 4 brain met treat
My problem is that if they don't keep trying they won't find out what DOES help" So true Lani.

I asked this question at a conference on evidence based guidelines. Most of the women in the room were "survivors" and I am a mets patient. I raised my hand and said that I was "dying of cancer" (***not that I feel that way but I needed the greatest impact and to make a point... I looked just like them). I told them that most folks don't even know I am sick. I told the speaker that the vast majority of treatments that I have received have not been approved for breast cancer treatment... no evidence (but they have all worked). Hmmmmm... so what about folks like me??? Not much of an answer other than to say that compassionate use and expanded access would help. Not so much, I found out later when I tried.

I didn't say this but I often wonder why am I different from the person standing out on a cliff waiting to be rescued? There isn't any evidence that they could actually save them and yet they send in the teams to try.

The other thought that I have is I am wondering if many types cancer have a lower response rate once there is mets and BC is being lumped in with other forms of cancer. If so, this is a distinction that needs to be made. Breast Cancer specialist need to be calling the shots when it comes to treating Breast Cancer... mets too. I have had more than 11 lines of therapy in 4 years and I still work full time and raise my son. Still kicking...

Those are my thoughts...

Carolyn

11-09-2009, 07:28 PM	#18
Carolyns Senior Member Join Date: Jun 2006 Location: South Florida Posts: 477	Re: you are not going to like this--first evidence based guidelines 4 brain met treat Lani - You are right! "Re: you are not going to like this--first evidence based guidelines 4 brain met treat My problem is that if they don't keep trying they won't find out what DOES help" So true Lani. I asked this question at a conference on evidence based guidelines. Most of the women in the room were "survivors" and I am a mets patient. I raised my hand and said that I was "dying of cancer" (*not that I feel that way but I needed the greatest impact and to make a point... I looked just like them). I told them that most folks don't even know I am sick. I told the speaker that the vast majority of treatments that I have received have not been approved for breast cancer treatment... no evidence (but they have all worked). Hmmmmm... so what about folks like me??? Not much of an answer other than to say that compassionate use and expanded access would help. Not so much, I found out later when I tried. I didn't say this but I often wonder why am I different from the person standing out on a cliff waiting to be rescued? There isn't any evidence that they could actually save them and yet they send in the teams to try. The other thought that I have is I am wondering if many types cancer have a lower response rate once there is mets and BC is being lumped in with other forms of cancer. If so, this is a distinction that needs to be made. Breast Cancer specialist need to be calling the shots when it comes to treating Breast Cancer... mets too. I have had more than 11 lines of therapy in 4 years and I still work full time and raise my son. Still kicking... Those are my thoughts... Carolyn Last edited by Carolyns; 11-09-2009 at 07:32 PM..