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Radiation Necrosis in Brain

cryssrock
Posts: 1
Joined: Aug 2018

Hello,

I am new on this website. I am a single mother of 3 kids, my oldest daughter, who was 12 at the time, was diagnosed with Germinoma in the brain back in 2012. She went through 3 sessions of chemotherapy and 30 days of radiation therapy. After treatment, she was healthy and back to playing basketball, dancing, running, etc. 

May 2018, she started to have seizures. She now suffers from incontinence, left side parapharesis, and now symptoms of dementia. This all happened rapidly and her behavior has changed dramatically. She is 17 years old now. 

After countless visits to the ER and medical clinic, the Oncology nurse called me to tell me that she may have a recurrance of the cancer OR radiation necrosis. 

I tried to do my research on radiation necrosis and couldn't find too much information about it.

Does anyone know what Radiation Necrosis in the brain is?  From what I read online, the prognosis didn't look good. Frown

 

Bellafelice
Posts: 56
Joined: Sep 2008

I am not an expert on this subject-but I have read that a huperbaric chamber may help tissue rebuild with this kind of brain necrosis. I hope this helps and I hope your daughter gets better soon. My heart goes out to you.

Gasyagirl's picture
Gasyagirl
Posts: 1
Joined: Oct 2018

Dear cryssrock! Did your daughter have MRI to confirm radiation necrosis? It`s uncommon for radiation necrosis after 5 years. It happends usually in first two years. What treatmen does you daughter receive now?

 

 

tkayo0633
Posts: 3
Joined: Jun 2017

my sister had 3 Mets in her brain from her endometrial clear cell cancer. She did True Beam radiation and the tumors shrunk. But about 6 months later the one that was just a little blur started growing rapidly. They ended up having to do open brain surgery and remove the 1 and did pathology on it and came back not cancer but radiation necrosis. They think the other 2 are the same. They are growing more also. She’s going in to start chemo. The tumor they removed was on her sensory for her lleg. She lost quite a bit of feeling in her foot and leg. The other 2 effect her vision and her balance. This may not be cancer growing but it’s just as bad if not worse because you can’t do more radiation. Not many options. Stay strong and ask questions and do your research so you know what to ask. 

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