Update + Questions about MRI, Treatment Changes

My husband's 10/8 MRI showed some changes. His NO met with Brain Tumor Conference yesterday morning (neurosurgeon, radiologists, etc) and then we met with her later in the morning.  He  was diagnosed 10/08, right temporal lobe.

 1. The spot they've been watching (in the posterior of the tumor bed) about the size of a dime didn't get much bigger, but it changed its shape and characteristics. All of them agreed that it looks more like necrosis than active tumor. So that is the good news, and I let out a sigh of relief.

2. Then she gave us the bad news where I let out a gasp of disbelief.... there is a new spot on the cerebellum.   "Pretty big", she said.  It appears "fluffy"on the MRI.   This could be attributed to treatment changes, OR it could be a new tumor forming.  No one in the conference was willing to take the leap and say "yes, that is tumor."    She's puzzled, because he is having no new symptoms, and his eyesight has not changed, and normally, you would see 

 The plan is to follow through with this Temodar cycle (starts tonight) and get an MRS on November 5th.   She said that we should be prepared to possibly hear news that we don't want to hear.  At that point, we will know what is next in terms of surgery, treatment, etc. 

Awful.  I hate the wait.  But I'm also grateful that we don't have to launch into a new treatment plan or surgery immediately. 

Has anyone gone through this?  A new spot that is actually treatment related and not tumor?    They said sometimes chemo can make the white matter appear fluffy?   They don't think it's so much radiation related, because he had IMRT, and it's so targeted that not much fallout should have affected the cerebellum. 

Any info/experiences, etc.  appreciated   My emotions are all over the map and this roller coaster is just so exhausting and horrifying.  

 One more question....is the cerebellum generally operable?  IF it is a new tumor cropping up? 

 

Thanks, 

OMH

husband diagnosed 10/8 right temporal lobe, left hemiparesis due to stroke during resection

OMH, Look into a PET scan that shows growth (if any) on a cellular level. That can give them a close look at what is going on.

take care,

janni

 

On 10/16/2009 jannibc wrote:

OMH, Look into a PET scan that shows growth (if any) on a cellular level. That can give them a close look at what is going on.

take care,

janni

Janni, that's what the MRS will do. They said they don't do PET scans, they prefer MRS. 

 

Interesting...let me know how that goes for you guys.  take care. hugs.

Has your husband changed his steroid intake at all? I only ask because something similar happened with my father when we took him off of steroids for the first time. There was a "blip" on his MRI that turned out to just be scar tissue, not tumor. After the strange MRI they changed his steroid level and one month later took a follow up to find it was gone. Radiation can be extremely damaging for over a year after it is done. Best wishes. I'll you in my thoughts.

As for steroids, he has been off of Decadron since December.  They were making him severely diabetic and it was hard to control his sugars even with massive doses of insulin, so they wanted him off the Decadron as soon as possible.