malignant grade 2 astrocytoma

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RE: malignant grade 2 astrocytoma

by kramos23 on Thu Aug 07, 2014 04:59 AM

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I was told I would need radiation or chemo eventually. But I hte this being a waiting game. Im going to call my insurance in regards to a 2nd opinion. Thats who I go threw correct?

RE: malignant grade 2 astrocytoma

by elfprincess on Fri Aug 08, 2014 12:06 AM

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The waiting game sucks.  I was diagnosed just a month shy of 2 years ago with either a grade 2 astro   or oglio.  Unfortunately mine is in the motor scensory area of the brain so surgery is not an option unless I want to be paralyzed on my right side.  Would need to have a biopsy to determine exact diagnosis, but still risky.  I started out with mris every 3 month and due to scheduling errors went to 6 months starting last summer.  I personally find 6 months between mris extremely stressful the day before the mri.  Why?  Because it is easy to get in the frame of mind that everything is 'normal' in 6 months to be struck down when you get that call to schedule the mri and NeuroOncologist appointment.  Congrats on the removal of the tumor!  If they are waiting to do radiation/chemo I'm guessing that they believe they got most of it during surgery.

I get where you are coming from but you probably have a better prognosis than i do.  I was 32 when I was diagnosed, I'm now 34.  My neurosurgeon at Mayo told me staight up that there was no cure since surgery wasnt an option and I had a choice between quality over quantity.  Only way for quantity of time was to remove the tumor and be paralyzed (sp?), not an option in my book.  

The whole 'benign tumor' is crap.  We asked my neuro oncologist if it was cancerous, even without the biopsy. Her response was that it wasnt supposed to be there in the first place.  Since most people consider cancer fast growing this isnt it.  However as an oncologist point of view it is definitely cancer.  

Good luck!

RE: malignant grade 2 astrocytoma

by elfprincess on Fri Aug 08, 2014 12:33 AM

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Definitly call your insurance company to see if you need a referal or another doctor near by.  I tried a neurosurgeon locally first but was not pleased with her manner.  She didnt let us ask questions and left us sitting staring at the 1st mri for over 30 minutes before she came in to talk to us about it.  Her office then dropped the ball with my insurance company while trying to set up a functional mri. At that point i was ready to try something else.

I called the neurology office that originally order the mri and called with the diagnosis of a brain tumor.  I asked them if they could get me into the neurology at Mayo clinic.  It is 4 hours from where i am but all my research says they are in the top 2or 3 for brain tumors.  Within 3 days i had a call from mayo with 2 appointments set up the following week.  I dont know how they decide which doctors get what patients in situations like this but I ended up getting the chief of neurosurgery for my neurosurgeon.

I went through trying to do the mri at home then going to mayo to see my no.  That turned into a big mess trying to figure out who was going to get the mri approved through insurance.  I talked with a person at mayo that knew my insurance company and their rules.  Turns out my insurance company only needed preapproval for mris in iowa and south dakota, so by going through mayo i didnt have to worry about preapproval.  Now my appointments start the afternoon of day 1 with the mri, then the results from the no the following day. Or a bright and early mri with the no appointment in the early afternoon.

I recommend doing your research and finding the best that you can get to.  Good luck!

RE: malignant grade 2 astrocytoma

by smaju on Wed Aug 20, 2014 08:27 AM

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does anything having idea of taking steroid in case of astrocytoma ? My one famili member (13 yr old boy) diagonosed with pilocytic astrocytoma in optic pathway . Had taken radiation in august 2013 .His tumour is inoperatable.

his recent MRI shows some increase in size and he is suffering from seizure/epilepsy since last 2 months...he is currently on steroid for 2 months

Can anyone give some light in this? We are really very very scared as after 1 yr of rdaiation size increases...

waiting for your views

RE: malignant grade 2 astrocytoma

by lifeisok on Tue Sep 02, 2014 07:47 PM

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On Jun 22, 2014 5:02 AM kramos23 wrote:

I am 4 weeks post off removal of my tumor. Drs said my tumor is a grade 2 astrocytoma but that it is malignant. I met with an oncology dr also a radiation dr. I am not going to be treated right now. But will be closely watch with mris. What has me the most torn up is I am only 24 years old. Can anyone relate? 

Hi. Elaven years ago I underwent emergency brain surgery for a [3 inch!] astrocytoma..  About 5 years latter I underwent a Gamma Knife. They both saved me. The gamma knife was great. The only part that hurt was the sting of novacaine to numb where the"frame" was attached (to keep me from moving). "Small potatoes" to pay for many more years of life.

The gamma knife sends the radiation in over 100 seperate beams that converge on the tumor. So...only the tumor gets a large dose of radiation. It takes awhile to know it worked. 

 My Doctor said I'd probably had it since childhood.

I'm not a doctor--this is just my experience. The gamma knife was well worth it.

RE: malignant grade 2 astrocytoma

by lifeisok on Tue Sep 02, 2014 07:48 PM

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Need spell check! eleven years...

RE: malignant grade 2 astrocytoma

by smaju on Fri Sep 05, 2014 09:56 AM

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Does anyone have any idea about the chemotherapy regimen vincristine and carboplatin  ?  how it works for low grade glioma ? is there any side effect ? people can lead normal life while taking this therapy like going school/office etc ?

pls share

best wishes

smaju

RE: malignant grade 2 astrocytoma

by tsande17 on Sat Sep 01, 2018 12:52 PM

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On Jun 22, 2014 5:02 AM kramos23 wrote:

I am 4 weeks post off removal of my tumor. Drs said my tumor is a grade 2 astrocytoma but that it is malignant. I met with an oncology dr also a radiation dr. I am not going to be treated right now. But will be closely watch with mris. What has me the most torn up is I am only 24 years old. Can anyone relate? 

It's been a few years, but I'm interested in knowing how you are doing.  In Feb, my 24 year old daughter had a seizure (out of the blue) and an MRI revealed a mass which turned out to be a Grade 2 Astrocytoma, in frontal area close to the surface of skull.  It was removed and drs said it was total resection and she is in "remission".  Because of that and her young age, no further treatment needed.  She now has MRIs evey 3 months and so far clear.  DRs say it might be years before recurrence or maybe not at all.  She is a Vet student and is so strong and brave.  She missed a month of school, but then made up what she missed over the summer and is now caught up with her class and ready to start year 2 next week.  I don't think she has any concerns that this will affect her future life (at least she does not act or talk that way and I don't think she is faking it).  I would love to hear about others who have remained cancer free for years.  As her mom, I am more concerned than she is, though I don't let on.  I am grateful for the positive aspects of her situation.  I hope you have done well!

RE: malignant grade 2 astrocytoma

by suz222 on Thu Sep 13, 2018 06:44 PM

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I just want to share that my son was incidentally diagnosed with a Grade 2 astrocytoma at 19 after a minor head bump at summer camp where he was a swimming instructor.  He had surgery and a subtotal ressection.  The tumour was very small to begin with, so the tumour residue is subsequently small.  Seems so much like your daughter with his positive attitude.  He's such a hero - although completely aware of the situation, he appears to feel this is behind him.  I pray he's right.  Wishing your daughter all the best.

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