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New and looking for advice

dannilyn
Posts: 1
Joined: Nov 2010

Hi everyone. I'm not really sure where to post this. So, I'm posting it here. I am a caregiver to my husband who is 24. He was diagnosed August 2008 with a brain tumor. We have been told that he has a low grade brain stem glioma. It's not very common for his age. We were told by an oncologist last month that this tumor will kill him. A biopsy is scheduled for February. They said they wouldn't do radiation without the biopsy. Even though, the oncologist told us that even if chemo and radiation shrink the tumor there is more of a possibility that it will grow back. And if it grows back there is no telling how it will be. It could grow bigger than it is now or change grade. He initially went to the doctor because he had been having headaches for over a year. He served four years in the NAVY. While in service, he had his wisdom teeth removed. Shortly after that the left side of his face went numb. They told him they probably hit a nerve and didn't look into it.
He has gotten so much worse over the past five months. They said that they tumor hasn't changed though. He can't walk by himself. He can't cut his own food. He can barely shower and dress himself without assistance. He falls on a daily basis. He has gotten to the point that he doesn't leave our appartment because he doesn't want people to see him like this.

Has anyone dealt with this type of tumor before?

52Karen
Posts: 4
Joined: Mar 2011

Hi Dannilyn,
I think it's important for you as his caregiver to move things along at a much faster pace based on his condition. How was he diagnosed with the brain tumor ? MRI ? The biopsy is the only way to determine the grade of the tumor and weather it is cancerous or benign so the doctors can determine one or more of 4 different options. Surgery, radiation, chemo-therapy or doing nothing at all. It's important to get that biopsy done so that you two can move on. As far as it growing back or changing grades doesn't really matter until you know what you're dealing with. Fluid build-up in the brain due to the tumor pressing on ventricles can cause symptoms without the tumor getting any larger. My wife has a rare brain tumor also. We have had a shunt implanted to relieve fluid pressure and her biopsy showed a level 4 PNET cancerous tumor that has caused numerous symptoms. She starts a 6-week radiation treatment on Monday March 7th that will be followed by chemo-therapy. Good Luck & God Bless !

Beckymarie
Posts: 358
Joined: Aug 2009

My husband was diagnosed with a GBM Stage 4 in March 2009. As you know, this is a very aggressive tumor. His was biopsied within days after it was found on an MRI, inoperable. After approx 12 months of various treatments which held the tumor in check, it did advance. Did your husband have radiation? My husband had a very difficult time with radiation and needed alot of assistance with daily activities until the swelling subsided. Unfortunately the tumor did advance and he again lost use of his right side. I am sorry for what you are going through, it is so difficult on both of you. I will keep you in my thoughts. Ask for and accept help from family and friends.

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