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Brain Surgery

Beckymarie
Posts: 358
Joined: Aug 2009

My 56 yr old husband was diagnosed with a Lev. IV, inoperable glio in March. Although the MD's have tried to give us hope, they have told us that 70 to 75% of patients with this type of tumor last a year or less. His tumor is large, size of a golf ball. We have heard such positive stories about brain tumor survivors. My question is do those who have operable tumors have better outcomes than those with inoperable tumors?

sue Siwek
Posts: 281
Joined: Jun 2009

all i can tell you is that my husband had an inoperable anaplastic astrocytoma grade 3 and on oct 1, at 12:30 pm he will celebrate the begining of his 10th year. another story, a young women that i know of had a tumor that was operated on nearly 20 years ago. she is married and has 2 children. i think it is important where you go for treatment i.e. a teaching hospital. google and you will find a place within reasonable distance from you. call them and make an appointment. if you need a referral ask your primary care doc. or even the place you were diagnosed. don't worry that they will be insulted, if they are any good they will refer you. if not find someone who will. good luck and revisit this site.

MinnieMN
Posts: 47
Joined: Aug 2009

I agree with Sue above, find a good medical center that can provide you with the latest treatment options. Miracles happen everyday! You never know-do your own research online, and don't be afraid to ask the doctors numerous questions. You will be in my thoughts.

nannyslilangel's picture
nannyslilangel
Posts: 9
Joined: Jul 2009

Some docs sed it was impossable to operate on me. I found a doc that would do it. He was only able to remove 20% but radiation took care of the rest. It's been 4yrs and 8 months since my surgery. I went to see the radation doc last week and he told me at first he didn't think I would make it...but I did. He told me I won't live another year...but I did! More then four years later I'm still here, ALIVE AND KICKING! Doctors don't know everything. If yor husband is a fighter tell him it's the big game and he's got to win for him and for you!
LOTS OF HUGS,
Lisa

BrianBarklage
Posts: 3
Joined: Oct 2009

Lisa,
Your story is inspiring. My brother-in-law Brian has medullablastoma. They just found a second tumor on his brain stem. The aggressive chemo didn't get the first tumor so the drs are giving him little hope. The put him on a mild chemo seeing if by chance it helps. Drs. said tumor on brain stem is inoperable. Obviously they are wrong! Do you mind me asking which hospital operating on your tumor? Any information would be welcomed. Thank you again for sharing your story. Stacey

Mannie
Posts: 51
Joined: Oct 2008

Although my tumor was in the frontal lobe, I am 100% certain that my neurosurgeon or one of his associates operate on brain stem tumors because my mom was telling me about an elementary school kid she had met with a cancerous brain stem tumor who had had it removed. I live 20-30 minutes north of Pittsburgh, PA. We have a couple teaching hospitals here. I had all my treatments done at UPMC hospitals(University of Pittsburgh) and I know they've made fantastic headway regarding neurosurgery and neuro-oncology, there are stories in our local papers a lot. I wish you all the best of luck. It is definitely something worth looking into. My surgeon's name is Dr. Arlan Mintz. I still see him every 3 months with my oncologist to make sure everything is going well.

Take Care,
Mannie

RLR
Posts: 36
Joined: Sep 2009

I was diagnosed last dec 15, 08 at age 54 with a Gliobastoma grade 4 tumor. I too was told it was inoperable. I was sent to Uof M in Ann Arbor for a second opion (we live near Toledo Ohio,) they also said surgery was to risky. I was then scheduled for radation and chemo on Jan 19,09. On 12/15/08 my tumor was 2 1/2cm. A couple of days before 1/11/09 I was having sever headaches in the middle of the night. Then on 1/11/09 I went to the hospital and they said I had to have surgery. The MRI showed the tumor was now 7 1/2cm the size of a baseball. On 1/13/09 I had surgery and have done pretty well ever since. I had 6 weeks of radation starting about 2/15/09 and started Temadar chemo the same day and have been on chemo ever since that date.I was told I will be on chemo for about a year.
Every thing I have read says prognoses is better with surgery. I think in my case I am much better off having had surgery.I have had some good and bad days but for the most part have good quality of life.I am pretty much able to do what I did before. My MRI from 7/25 shows no additional growth, the tumor was the same as from about Feb 09. The doctor says as long as there is no increase that's good. I just had another MRI yesterday 9/11/09 and will get those results next week.
One of my biggest problems was my vision after surgery. My eyes no longer work together, I now have what's called 4th nerve palsy so they put prisms in my glasses to correct this and now I can see much better.For the most part I only had trouble reading. My vision is about 90% of what it was before surgery. Before the prisms it was only about 60%. Take care and God Bless

Beckymarie
Posts: 358
Joined: Aug 2009

Thank you for your reply, sounds like you are doing well. Where is your tumor located? My husbands is located very deep in the brain over the hypothalamus. The opinion of several doctors we have spoken with are the chances of severe brain damage is too high to operate. As I mentioned, the temadar did not halt the growth of the tumor, so now doing Avastin and a possible clinical trial down the road. God bless, I hope you continue to do well.

theresalewis
Posts: 1
Joined: Mar 2010

Hi Becky,
November 24th 2009 my husband age 40 was told that he had a tumor. GBM IV in his Hypothalamus area. He could not have any of the tumor removed and when they did the biopsy he lost a lot of his short term memory and he does not sleep and he is cold all of the time. Does your husband have any of this?

He only did 17 days of treatment because he could not handle the mask.
Theresa

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