I have a Brain tumor, what should I do???

FlamingStar.nl

Hello,

I am new here. Since a few weeks I know I have a brain tumor. For more information you can see my website http://www.FlamingStar.nl . Most is in Dutch but the main story and some other stuff is already translated in English.

In The Netherlands the standard procedure for people with a low grade and under 40 years old, is doing nothing. They call it "Wait and See" what means come back every 3 months for a new MRI-scan.

I am really looking for advice. How does other countries tread my kind of tumors? Should I get Churgery, Chemo, radiation or.....????

Thanks in advance,
Nico
_________________
When the going gets tough, the tough get going.

ksplat · Posted: Wed Sep 19, 2007 4:44 am Post subject: Re: Your new diagnosis

Dear Nico,
I've read yr website & have to say I am very sorry to hear about your news regarding a brain tumour! Yes, you're right, we do get an occasional "curve ball" thrown at our feet & our fighting spirit will determine the outcome. Although, in your case it's a major health issue for you & your young family. My thoughts & prayers are with you all.
On this forum you will find lots of support, information & comfort, which are all invaluable.
Brainman is a "site admin" & also a survivor of a Grade 3 Glioma. I hope he picks up your thread soon as he will have some good advice for you....as do others on this forum.
I myself have a relative (brother), 46yrs young, with a Gliomblastoma Multiforme Grade IV which is the most serious kind of brain cancer. The median time line for survival is only 12mths. I subscribe to this forum for support from other members. I find it helps me cope better with my Brother's illness. I hope & pray you get the answers you are seeking from this brain cancer forum. God bless you & your family. Cheers, Aussie Angie.
_________________
Brother has GBMIV
Diagnosed Feb 07
46 Yrs young!
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

brainman

Hi Nico,
I am sorry to hear that you have brain cancer. It is distressing to me that you have to wait before they will do anything further. How do they know it is even cancer and not a benign tumor? Although an MRI can tell a lot about abnormalities, it cannot give you a conclusive diagnosis. Do you not have any other options?

I am a long term survivor of brain cancer. You can read my story by going to the link in my signature block. In 1992 it was a grade 2. When it recurred in 2005, it was a grade 3. In November, I will have officially survived for 15 years since first diagnosis Very Happy

. It can be done.

You are in my thoughts and prayers. Keep us informed.
_________________
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
Blog http://jimhawkinsport.blogspot.com/

FlamingStar.nl

Hello Aussie Angie and Brainman,

Thanks for your replies! The only thing they use to do in holland at tumors that looks like low-grades is doing every 3 months a new MRI-scan. I have now only got one MRI so there is still a change of 30 procent that it is a high grade, but they told me that they will see that on the next MRI-scan depending on how de tumor has develloped.

Tomorrow I will have that next MRI-scan so I am a little nervous about that. On our special request they will make an Functional MRI-scan so that we can see which brain functions are in the neighberhood of the tumor. Maybe they will operate (on our request) when they can get away more that 50% with low risk of damage. But that is not the procedure in Holland for people below 40 years old.

Brainman, I will go and read your site but I am very interesting in what you have changed in your lifestyle and done since you were diagnosed to have a brain tumor. Did you change your food? Did you try alternative supplements or something else?

Today I am a little busy but I will come back a.s.a.p.

Thanks in advance,
Nico
_________________
When the going gets tough, the tough get going.

brainman

Nico, I will be thinking about you tomorrow when you have your next MRI. In some ways, if you do have to just wait and watch, a glioma is a good one to do that with because it does not metastasize like other types of cancer do. And if it was a fast growing glioma, you would have functional changes. In my case, I first found out that I had a glioma when it started to cause seizures. In my mother, it caused vision problems. Unfortunately, too many times it grows silently until it is too late for surgery.

As for what I did differently after diagnosis, not much. I still eat a diet with too much cholesterol and other fats... too much cheese and ice cream Laughing

. I did start taking a multi-vitamin. Although I do like some teas, I do not take any form of alternative medicine. I have never smoked and never drink too much alcohol... only drink at weddings and such. I do drink a lot of water (good), but I also drink a lot of strong coffee (bad). I walk and hick for exercise but I did that before. In fact, before cancer I used to run. Chemotherapy damaged the nerves to my feet so I can't do that anymore or I will fall. Sorry that I am not a good spokesperson for a healthier life-style Embarassed

Best wishes with your MRI.
_________________
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
Blog http://jimhawkinsport.blogspot.com/

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