Advice Needed - Low Grade Glioma?

ddglioma · New User Joined: 06 Jul 2008 Posts: 1

Hello All -

I just joined and have found many of the stories in this forum interesting. I hope some of you may be able to offer me some advice.

Last November I went to my primary care doctor complaining about 'myoclonic jerks'. I did have some fatigue, and I never can find anything! (But this may be due to having three young children, a stressful job, etc.) Basically, as I am falling asleep, I get these fairly severe muscle twitches. Apparently, this isn't that uncommon. But sometimes they keep me awake. Sometimes they do happen in the middle of the night. I was having trouble sleeping, and it just didn't seem right. My wife was a little scared in that she felt it was new, and was just too weird. So, I went to see the doctor.

He was concerned enought to get an MRI. MRI showed a clearly defined lesion in the right temporal lobe - 14 x 12mm. I couldn't believe it. The radiologist report suggested a differential diagnosis of cortical dysplasia, complex cyst, or low grade glioma. I went to see a neurologist and had the standard exam. Everything seemed to check out. She suggested I shouldn't worry too much. Hmmmm.

My wife and I decided that wasn't quite good enough, so I went to see a neuro-oncologist and surgeon. He ordered more tests - PET and MR Spectroscopy. (I do have good insurance.) PET was hypometabolic in the area of the lesion. MRS did not show choline or other peaks indicative of 'neo-plastic process'. This all happened in November. He suggested that we do another MR in February. We did discuss biopsy, but he wasn't real supportive - he thought the risks weren't worth the benefit.

In Feb, the MR showed the lesion again, but with no change in size. I had an EEG that same month, and while there were some 'mild abnormalities', there was no evidence of epilepsy.

I've done some homework on the web, trying to figure out how to handle low grade gliomas - especially if you aren't sure that's what you have. Its confusing, and there is considerable debate. The second neuro-oncologist did say that low grade gliomas are likely to change into more aggressive high grade ones later. But he also said I could have had this lesion since birth. He did take it to the medical center's tumour board, which confirmed his plan of 'wait and see'.

So, I am conflicted - and its stressful not knowing what I have. Do I have a biopsy? I was informed that these can be not that reliable - meaning they don't work. I also am worried they'll cross some artery and do some damage.

Should I get more opinions? What other tests is anyone aware of that can differentiate between glioma and non-glioma?

I am basically trying to forumate a plan. I do have my next MR in two days.

Thanks for your replies...

pbj11 · Site Admin Joined: 12 May 2007 Posts: 1142

Hello and welcome to this forum and website.

I'll be honest and tell you that I don't know a darn thing about glioma's, but I suspect others will be around to help with some of your questions and concerns.

Keep checking, as our head administrator does have knowledge in this area, but he is away for a couple of days.

I see why you are perplexed over this problem. Off the cuff, I'll say one thing --- if a surgeon doesn't want to operate, I'd go with his/her opinion. I've never yet met a surgeon who can't wait to operate!

Take care and I hope people will be around soon to reply and help.

PBJ
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Post describing our battle: http://cancerforums.net/viewtopic.php?t=7026&postdays=0&postorder=asc&start=0

ksplat · Posted: Wed Jul 09, 2008 7:29 am Post subject: Re: Low Grade Glioma?

Hello there,

You have found a great community of support here, but unfortunately it is under a cloud of whether you have a glioma or not?

I do have a little experience (not as much as our Chief Admin though!) as I have a Bro with a Gliomablastoma Multiforme Gr 4 (or GBM IV).

It is encouraging to know that your lesion has not increased in size over the months you have been having it checked. I believe the only way to find out if it's a tumour or not is to have it biopsied. Are you still experiencing the muscle twitches?

As your Dr said though you may have had this since birth? It is hard to know what to do? I know in my Bro's case that his tumour is very aggressive (Grade IV) & he has had 4 debulking surgeries since Feb 07.

There are several members on this thread with Gr 2/3 (many different varieties of tumours) brain tumours. I do hope some of these members will be able to offer their opinions in answer to your questions?

I do know their are risks with these type of surgeries (any surgery). Is the lesion in an easily accessible spot? I would understand a "wait & see" approach too.

I would recommend you seek a 2nd opinion (if you haven't already). Keep us updated on your progress .

Thinking of you,

Cheers, Angie.
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Brother diagnosed with GBMIV Feb 07
Treatment: Radiotherapy, Temodal, Gliadel Wafers, Dexamethasone, Keppra, Dilantin, Clexane
Went to our Heavenly Father after a 19mth battle,, 47 years young.
23 Sep 2008
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

Derek

Hi ddglioma,
A "lesion" is used to describe any abnormality or patholgy in medical or scientific literature.
A radiologist, who has usually seen thousands of MRI's, would normally have the best idea as to what the diagnosis may be.
Neurosurgeons themselves, by necessity, are also very good at reading radiographs - and probably not as ambiguous in their differentials.
I would suggest that the differential diagnosis is a probable low grade glioma.
My wife's neurosurgeon said he would bet his house on the diagnosis of low grade glioma.
I didn't like this cocksure attitude to start with, but having a scientific background, I knew he was probably right.
What to do?
There is no consensus on what should be done, and/or when surgical and other intervention should take place.
A low grade glioma is not "benign", and is a genuine cause for concern - as they can, and do, progress with time.
First of all, get a diagnosis, no point in beating about the bush.
Then see at least 2 or more neurosurgeons and decide what to do.
Generally, if it the lesion is causing symptoms, then debulking or total surgical excision would be the way to go - as pathology taken at the time will also let you know exactly what you are dealing with.
Long term survival is increased with total excision, but all surgery does have inherent risks associated with it.
Immediate short term symptoms should also be resolved with surgery.
Chemo and/or radio is generally only reserved for grade 3 and above after surgery, and histopathological diagnosis is confirmed.

Derek.

brainman

Hi ddglioma. I am very sorry about your health concerns. To biopsy or not to biopsy, that is the question.... and not a very easy one to answer. With out a biopsy, there is really no way to know with 100% certainty what the lesion is. However, there is some bad new and some good news.

The brain is the only organ in the body that is confined to a small "box" so any foreign "thing" can cause the internal pressure to change and affect the brain in some way. My low grade glioma causes me to not be able to speak or use my right arm/hand for about 30-50 seconds. It would not have made any difference if rather than a glioma is was a hemorrhage. How even the smallest lesion affect a person depends on its specific location. So, to a certain degree, it does not matter what the lesion is. That is the bad news. Whatever it is, you have it. Are you on any kind of medication to control your symptoms?

Worse case scenario... it is a glioma. Since it has not changed, it is safe to assume that it is a low grade glioma. That may sound like bad news, but it really is not. Like your neuro-oncologist said, you may have had it since birth. Gliomas do not metastasize to other places in the body and not even to other places within the brain. So, the plan to "wait and see" is not a bad plan. Believe me, I know how hard it is to take that approach. But until it starts to cause significant symptoms or to impact your daily life, I would agree with your medical team.

I hope your MRI yesterday showed no change.

You are in my thoughts and prayers.
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Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
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