Medullablastoma

ajnabi90 · New User Joined: 15 Jun 2009 Posts: 3

Hi,

I am 26 years old male. I recently had my brain surgery for brain tumor on 23rd May. My symptoms started on 5th May, 2009. In initial diagnosis, doctors suggested that it might be astrocytoma, ependymoma or meningioma.
After the surgery i recovered well and doctor said he achieved gross total resection. My biopsy report revealed that type of tumor was Medullablastoma.
Does anyone have any information regarding prognosis of this type of tumor? Also what further treatment is required? My doctor said both radiotherapy and chemotherapy is required. I took opinion from another doctor and he suggested only chemotherapy.
A quick response will be highly appreciated.

Thanks & BR

4lindsay · Regular Joined: 12 Apr 2008 Posts: 31 Location: Seattle

I'm so sorry you are having to go through this. You are young like our daughter Lindsay. She is 23 and has a grade 2 Oligoastrocytoma.

From some quick research on Medullablastoma, there are studies out there that say low dose radation therapy to the posterior fossa are essential for tumor control. They recommend a dose of 54 gy to begin 30 days after surgery. Remember, you are a medical consumer...do your research. Or have someone you trust do research for you. There is lots of information out there on the web. Read the medical journals that show study results and look at all your options.

Dianne

ajnabi90 · New User Joined: 15 Jun 2009 Posts: 3

Thanks a lot for your reply. Very sorry to hear about your daughter. How is she now? Prayers and best wishes for her health. Whats the difference between type of tumor your daughter has and mine? Do you have any idea?

brainman · Posted: Sat Jun 20, 2009 10:59 pm Post subject: Re: Medullablastoma

Hi ajnabi90. I am so sorry about your Medullablastoma. I believe that it is a type brain cancer that belongs with the group of brain cancers known as PNET (Primitive neuroectodermal tumor). I do know that in in order to even begin to give any prognosis you need to know:

1. Grade of the tumor
2. Size
3. Location
4. Overall health

Personally, I do like to know my prognosis... but only in order to set some goals for whatever time I still have left. But after setting those goals, I just try to live one day at a time working to achieve those goals.

I would also say that you should do your research and discuss your options completely with your doctor. A question I already know that I would have is about the use of radiation since it pretty much is a one time for the rest of your life type things. If the tumor recurs, they can always do surgery and chemo again... but maybe not radiation. It is a tough call... radiation at this point may be the best thing for you. Make sure you ask your medical team about this.

You are in my thoughts and prayers.
_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
Twitter: @JimHawkins54

ajnabi90 · New User Joined: 15 Jun 2009 Posts: 3

Hi,

Many thanks for your reply. I was reading your story. People like you are truly inspiring for all brain tumor patients out there. I really admire what you are doing. Well as for my case, here is the information mentioned be you in your message:

1. Grade of the tumor
There has been no grade specified in the biopsy report. I got the report from two labs and both didn't mention any grade. In one report GFAP was positive and in other it was negative. Even on internet when I searched for medulloblastoma, i didn't see any grading information.

2. Size
It was 4*3.2 CM in diameter and 3.1 cm in craniocaudal direction.

3. Location
It was in left cerebellar region.

4. Overall health
After surgery, I recovered well. Even the slight weakness in my left arm was gone. Now I am recovering well. I am able to drive, walk and run. Sometimes I feel exhausted but that too when I do lot of driving or some other hard work. Apart from that no complaints. I have apontiment with radio oncologist tomorrow and he will give me schedule of radiotherapy and/or chemotherapy. My surgery date is 23-05-2009. What do you suggest how long I can wait for radiotherapy to start?

Looking forward to hear from you soon.

Thanks & BR

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