Watch and Wait for 'low grade glioma'

He had his surgery at Memorial Sloan Kettering... Dr. Gutten was the surgeon.  We stayed with the doctors there throughout his journey and felt he got very good care.  His first neurologist at MSK has now retired, I think. His second one was Dr. Givrilovic (sp?).  Best of luck to you.

Carol

Oh, I forgot your other question.  He took medication for seizures right away, which got changed over the years.  The watching and waiting was in terms of surgery.

Carol

Hello mollie 924,

Can you explain what an astrocytoma that is non enhancing. My best friend has a low grade 2 astrocytoma underwent surgery and  5 weeks of radiation x/week, now on watch and wait til scan in Sept.

Thanks

I would recommend for anyone who has any type of brain tumor to go to a facility that specializes in brain tumors!!  Such as Duke or MD Anderson... there are many others too.  I would not be comfortable with the "watch and wait" approach, especially if there has been any type of growth unless it is coming from one or more of the Dr.'s that truly specialize in brain tumors.  Good luck to you!

~Sheri

the way I understand it - when the MRI dye (gadolinium) is given then the more malignant the tumor is the more it takes up the dye and enhances on the scan.  After radiation there is a month before the scan is done.

Well today I saw the neurosurgeon.  He said the lesion was stable and will continue to watch and wait.  He said the symptoms were stress and migraines as the neurologist stated.  He wanted to wait 1 year for the next MRI scan, then went down to 6 months when he saw the distress on my face.  I have said I would prefer 3 monthly scans as these have a tendancy to change with no warning as I have read.

He said that as the lesion is in the right parietal lobe, he will not do a biopsy as I will have a stroke.  He also stated that this is not cancer (what is a grade 2 glioma then?).

I asked how large has the tumour to get before he does something, he glanced at my scan and said until it invades further into the centre or presses on vital areas!  This is such a worry.

I saw him through a private consultation which I paid for (no insurance) the first time.  I felt that he was not as posh or pleasant while seeing him through the NHS.

I do not want an operation on my brain but I am concerned that he will leave the lesion until it is very large before doing anything and he isnt certain of the grade anyway, only going on MRI scans.

Get copies of all your MRIs and medical records concerning this, and contact some brain tumor centers around your area.  You need to have a second opinion, as a grade 2 glioma is cancer.

Most of the main BT centers, you can forward you MRIs and med records and they will look everything over before you make the trip in.  I have done this for my husband in the past, and even had one that review his case in tumor board w/o ever seeing my husband.

Hi Karynk,

I didn't believe what he said about it not being cancer either.  He doesn't know for certain what grade it is as I have not had a biopsy, he said its a low grade glioma, which is generally grade 2, grade 1 would be highly unlikely as I am 42 and not a child or younger person.

I said in my opinion it was the chemicals that cause it that I worked with for years, he completely dismissed this and said that its like all this nonsence with mobile phones and concerns about tumours, said they are not rising in numbers so its just a myth.

He is from a BT centre.

Dear Paz,

Try not to get too distressed.   Like you, my husband was diagnosed with a low grade glioma.   He's still here 23 years later and he may be fine for another 10 years (the Drs. cannot say).   Just enjoy every moment, relish your days with your children, be proactive with stress relief and good nutrition and TRY not to get too anxious and overwhelmed.

If you maintain a positive attitude I'm sure good things will happen.

Take care,

EvelynBxx

Dear Evelyn,

Where was your husband's tumour, he had surgery no?..

my good friend has a low grade tumour, right frontal lobe, took surgery and radiation, will have a scan early sept. Hoping she will be able to enjoy a long life... she is the anxious type, has a thyroid condition and struggles with an anxiety disorder...