HER2 Support Group Forums - View Single Post - After Whole Brain Radiation -now what?

Lani · 02-01-2009, 10:50 AM

Her radiation oncologist told her there was no way her mets could come back after WBRT. Where do these people come up with these things?

Her best hope for a clinical trial is one which requires her to have a repeat brain MRI 30 days after completing her WBRT to see if her brain lesions are stable/still there, in which case she may qualify or progressive, in which case she is not.

As usual, I am just getting her info/articles to to help her decide. I did not want to be the one to question what she had been told by a radiation oncologist, but just pointed out to her that the requirement for inclusion in the clinical trial wouldn't be there if "things were that easy"

Do these radiation oncologist learn that this is "the nice thing to say," do they really believe it because they don't see the patients back and don't follow what happened to them (ie, the go on to cyberknife/gamma knife
as you certainly can't have WBRT twice as I understand it), or what is going on.

Sorry to be sounding off, but sometimes I am just flabbergasted.

Perhaps Joe should make a video of Christine, Steph, Esther etc telling their stories so these professionals can learn something of the "whole spectrum of the disease" At conferences I continue to hear that the average life expectancy of those with Stage IV bc is 2 years, 1 year for her2+ metastatic breast cancer who don't get herceptin. How about some new stats as well as a "sensitizing" video to be shown at , say ASCO, ASTRO and the surgical oncologists meeting to put a face on these stats and show the quality of life possible if one realizes the natural history of the disease has been fundamentally changed by herceptin and, perhaps, aggressive treatment of brain mets.

Off the soapbox for now.

02-01-2009, 10:50 AM	#4
Lani Senior Member Join Date: Mar 2006 Posts: 4,778	I have just been helping a woman with metastatic lung cancer who had WBRT Her radiation oncologist told her there was no way her mets could come back after WBRT. Where do these people come up with these things? Her best hope for a clinical trial is one which requires her to have a repeat brain MRI 30 days after completing her WBRT to see if her brain lesions are stable/still there, in which case she may qualify or progressive, in which case she is not. As usual, I am just getting her info/articles to to help her decide. I did not want to be the one to question what she had been told by a radiation oncologist, but just pointed out to her that the requirement for inclusion in the clinical trial wouldn't be there if "things were that easy" Do these radiation oncologist learn that this is "the nice thing to say," do they really believe it because they don't see the patients back and don't follow what happened to them (ie, the go on to cyberknife/gamma knife as you certainly can't have WBRT twice as I understand it), or what is going on. Sorry to be sounding off, but sometimes I am just flabbergasted. Perhaps Joe should make a video of Christine, Steph, Esther etc telling their stories so these professionals can learn something of the "whole spectrum of the disease" At conferences I continue to hear that the average life expectancy of those with Stage IV bc is 2 years, 1 year for her2+ metastatic breast cancer who don't get herceptin. How about some new stats as well as a "sensitizing" video to be shown at , say ASCO, ASTRO and the surgical oncologists meeting to put a face on these stats and show the quality of life possible if one realizes the natural history of the disease has been fundamentally changed by herceptin and, perhaps, aggressive treatment of brain mets. Off the soapbox for now.