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Anyone had any treatment with the Cyberknife ?
Like does it work? All I know is that it send precision radiation on the tumor.
But some says our tumor is in our genes and can regrow any time it wants.
NF3(schwanomatosis) is a localized tumor to a certain region.
Any thoughts?
I have an opinion on this....unless absolutely necessary to save a life, NFers should try to avoid treatment with radiation as it may be linked to an increased risk of a secondary malignant tumor. It's a matter of weighing the risk and the benefit. Personally I do believe that the risk is quite real and significant and this would be my absolute last choice of treatment.
http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=2563223
Cindy
Some article. Complicated article to read.
Yeah a last resort.
Well, here is a story that is very interesting (and easy to read). You may have heard of this lady before. Not that this is a typical story by any means but I thought that the theory and comments about previous radiation in her case were rather interesting.
http://www.nfsupport.org/News.php?action=read&Article=17
Easier to understand. Mix blessing. First not to have had radiation. Since she did, the tumors were big enough to show themselves to be removed. Big risk in removing them all at once and risk of infection.
Do you know the girl featured in the song Elizabeth sung by Billy Gilman. It was song about a NF girl that
has so many tumours in her. She died I think like 1-2 years after the song due to the multiple surgery she had.
I had the Cyberknife treatment at UCSF in Oct. 2008.
The follow up MRI (6 months) shows no change in the tumors. The doctor stated it could take up to a year to see if the raditaion shrunk or eliminated the tumor. So, I will wait and see. The targeted tumors are in the S1 & S2 nerves off my spine.
Wow. What was it like? As I understand the concerns are also on the NF nears the targeted tumors.
I suspect that yearly scans will be needed since NF is generally slow growing.
My best of luck to you.
Hi;
I've read several places the risk of conversion to malignancy is minimal. Actually, hardly worth mentioning. One person who reported this was Dr. Medberry at the Cyberknife support group. Risk for malignancy of irradiated tumors has generally been considered negligible at the acoustic neuroma support group I frequent also.
Re, Tx success; It is troubling to me radiation providers will simply consider 'no growth' as a Tx success. I rather think not, especially in NFers.
I do believe NF type tumors are more resistant to irradiation and Tx results are not as well as with a spontaneous, single tumor.
Russ
My brother sent this finding
Proton Cancer Therapy Accelerates
http://www.cbsnews.com/stories/2009/08/20/tech/cnettechnews/main5255787.sht ml?tag=cbsnewsSectionContent.7
I'm not sure how this compares ??
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