Concerns about whole brain radiation treatment for ASPS

[Bonni Hess]

Dear ASPS Community Friends,
I am becoming increasingly concerned about the use of whole brain radiation treatment (WBRT) for ASPS brain mets based on several anecdotal ASPS patient failed treatment experiences and results with this seemingly ineffective treatment which is at best only palliative and not curative. I think that it is very important that ASPS patients be well informed, that they explore all other possible treatment options, and that they proceed very cautiously before undergoing WBRT. Based on my close observations of the past several years, it appears that WBRT is not effective in preventing the development and increased growth of ASPS brain mets probably because ASPS is so notoriously radiation resistant, and since it is not possible to administer a large enough dosage of radiation to the entire brain with WBR, as opposed to the intensive targeted radiation which can be administered with Gamma Knife or Cyberknife treatment for individual small brain mets. A validated and very serious possible side effect of WBRT is permanent debilitating short term memory loss and mental confusion which I personally know was tragically experienced by at least two ASPS patients treated with WBRT. Based on these anecdotal observations of failed efficacy of the treatment and the known potential for severe memory impairment and functioning, I personally feel that WBRT should be used only if there are no other viable treatment options, and if potential benefits of the treatment can be documented with available data to ourweigh the considerable risks. Based on our personal experience with Brittany's multiple brain mets during the past five years, resection, if the tumor can be safely surgically removed, seems to be the best treatment option. If the tumor cannot be successfully resected because of location, and if the tumor is small enough to successfully respond to radiosurgery (less than four millimeters in our experience) Gamma Knife or Cyberknife seem to be the next best option to try to kill/shrink the tumor. An effective systemic treatment to try to prevent the development of new brain mets seems to be a better option than WBRT, but the treatment must be able to cross the blood brain barriar. However,if the location, size, and the number of tumors make it impossible to surgically remove or to Gamma Knife or Cyberknife the tumor/tumors, and if no effective systemic treatment is available, then WBRT may have to be considered as a treatment option. I am not a doctor, and I do not intend to provide medical advice, but I just want to share my anecdotal observations and concerns regarding this treatment which too many doctors seem to continue to advocate and prescribe despite the dismal record of treatment success and outcome for patients with ASPS brain mets. I welcome any further input or opinions from anyone who may have any personal experiences or anecdotal or researched information to share with this Forum regarding this treatment.
With special caring thoughts and continued Hope,
Bonni
CureASPS Member

Posts: 151
Joined: Tue Aug 15, 2006 6:32 am
Location: Sammamish, WA USA
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