Brain Tumour Survivor

Hi, Oh okay thats interesting.

Mine measured 65mm x 31mm x 26mm. Mine was made up of ganglion, astrocytes and extensive amount of oligodendrocytes.

Hope your healing process goes well.

Sarah

My husband who is 55 had surgery in 2006 for a left temporal lobe ganglioglioma - grade II. Doctors removed all they could see without damaging his good cells (reading and speech area). Did great after surgery, no treatments needed. Then last year (2011), his MRI showed the tumor had grown and a second surgery was done. This time it was a grade III and he had 30 radiation treatments and is still on chemo pills 5 x a month (temodar). Did great up until 4 weeks ago when he started having some speech problems. He had a profusion MRI which showed radiation necrosis had developed. This is damage from the radiation treatments. Was put on steroids but he was getting worse so now he has started Avastin IV treatments. We are hoping and praying that these treatments will reduce the necrosis and reverse the damage. He is unable to read, write and can only say a few words at a time clearly. He had to take a leave from work and is very depressed and frustrated which is very understandable.
This type tumor is very rare and usually shows up in children. I haven't had much luck in finding anyone who has had one. Now with the necrosis problem, I find this is rare as well.
Would love to hear from someone who has experienced necrosis and how they are doing.

Hi pnktulip,

I was an adult when I was dx at 32 years old. Now 3 years on all scans have been stable. I have another Neuro appt today to find out what my recent MRI 2 weeks ago were.

I am very sorry to hear of your husband's recurrence and coming back with a higher grade.

It's amazing how many people assume that as grade II is classed as benign they don't realise they can still grow back and as a higher grade. Have you found people think that too?

I can imagine he would be very frustrated and depressed. Hope things improve somehow with the necrosis. I have not had any further treatment to date so can not comment on the necrosis.

Was your husband's original tumour big? Does he have epilepsy? I have been very lucky not to have any seizures as yet.

Thinking of you both,

Sarah

I had a grade 1 ganglioglioma removed in 2007, they say they got it all. I had my last scan about 3 years ago but I wonder if I should get another scan to check up on it? I worry about it returning.

richard1,

Definitely have regular scans. My neuro has been doing them regularly since diagnosis and op and will continue them from now until I am old (all being well)

I've found it difficult to get a scan because in nz you need a referral to get one. Maybe I'll just have to try and talk my gp into referring me... Thanks

What reason does s/he give?

A second way is to get a referral to a neurologist who may refer you for the scan (I did this).

A more direct way is to get a second opinion. You are entitled to this.

Best of luck!

Hi -thanks for your response.

I had the tumor removed in March 2007, they scanned me at 6 months, 12 months, 24 months. Then they said they felt it was cured through surgery and only very small chance of it returning (I think they quoted less than 5% when I pushed them) so no further scans - the tumor was a grade 1 ganglioglioma. So I have had no further contact with anyone or any checks since then. Is that normal?

They told me to essentially carry on as if I'd never had anything - go back to doing everything I did prior to the tumor. I am coming up to the 5 year anniversary of my surgery and the more research I've done the more would suggest I should have some form of periodic check - I'm not really sure what I should do...

Richard

Hi,

I went and requested a follow up scan and they referred me for one - I had the scan on Thursday and spoke to the nurse yesterday who said that although the doctor hadn't looked at it, the report said no sign of tumour recurrence and it was clear so she was able to give me the result. So I'm really happy and relieved at that!

Having the follow up scans every couple of years just makes me feel more in control of the situation. Thanks Kenobewan and Sarahrenee for your advice...

Richard

Great to hear!

Hope things are going well :).

Any news?

Hi
Dx jan 13, Australia, 3.5 x3,5x3,5 GBM Grade 4. Operation a success, except a stroke into it 2 days later. Been through chemo, Temodal, radiation, 42/30 now halfway way through Temodal 5/23, which is knocking me about a little. Stanima, pain, and coming up to my first MRI after treatment 1st of August which is going to be interestsant due to the vision loss and balance issues I am having, will keep u all posted.
John