Friday, August 1, 2008

Not Just Any Brain Tumor

Well, we saw the doctor for the first time since surgery yesterday. It was quite a day to say the least. This will be in no particular order and may seem a bit jumbled because there is a lot to get out and I haven't fully wrapped my own brain around it yet so... well, just bare with me.

1. The doctor says I look great and everything seems to be healing well. He was pleased with how things look.
2. I still don't know when I will be returning to work (gotta speak with the manager of my short term disability claim sometime today before I will know.). However, I have been cleared to drive. YAY!!! John and I will be going out a few times over the next few days until I get the hang of it again and make sure I feel strong enough.
3. I can resume light duty activities as long as I listen to my body. This means I can maybe start light weights and lift things a little like I've been doing. *Shush don't tell*
4. Ok, I'll cut to the chase. My tumor pathology also came back. It is an Anaplastic Astrocytoma glioma. This means it is a full blown grade three tumor that has infiltrated into my brain and reproduces at a rate higher than any low grade glioma. This means it is a malignant tumor. (aka brain cancer) Luckily, my tumor is only reproducing at 6% on a scale that goes to 100% so it is still reproducing very slowly, which is very good.
5. They are suggesting radiation to follow to take care of the tumor that remains. I speak with a radiation onocologist here locally next tuesday to discuss this treatment and so John and I can make the decision if we really want to do this. In the brain, radiation can cause either short or long term problems with functions including memory, intellect, and other high function areas of the brain. It can also cause severe fatigue, nausea, etc, during and after treatment. This is a lot to consider since I am sitting here with absolutely no problems.

Ok, I think I summed it all up pretty well. There's a lot more but I really don't have it all sorted in my head enough yet to discuss it. I will type more as I know more.


  1. My husband had radiation after his brain surgery for a level three astrocytoma. It made his skin red and then brown and he lost his hair on that side. He came through pretty well, though. Nausea wasn't a real problem, and besides, they have good drugs. He had some dizziness, but the seizure meds probably caused that. In other words, don't be afraid of radiation if you decide you need it. He was put on Temodor after the radiation, and managed that well, too, with a good nausea med. It was in pill form and given five days each month for a year. He's 76 years old and a tough guy. He's heading back Monday for more surgery because his tumor is back and growing fast. It's level four this time. Just like Ted Kennedy.
    Good luck.

  2. Hi Amy,
    My sister had radiotherapy for a grade 3 following surgery last year,she was 34 at the time.
    We were told to expect some of the things you mentioned but really she breezed through the whole thing,coming out with no deficits whatsoever.Her Oncologost told her that the process "ages" the brain by aprox 10 years but that in young person this hardly makes any difference.
    I think alot depends on which area of the brain is being radiated.My sisters was the frontal lobe.
    My sister is doing really well.She has her next scan on 8th August so we are all hoping for the best...
    I wish your family well and hope that you and your family come to decisions that you are positive about over the weekend.
    Take care,
    Sharon r

  3. Hi Amy, I have wrote you before about my sister Donna. She has GBM stage 4.A highly sggresive tumor.Since March she has had radiaion and temodar chemotherapy for 6 weeks.The most noticeable side effect was fatigue. She did eventualy lose the hair in the area of the radiation.Afterthat treatment she went on to just taking temador once a month for 5 days,. But after a month of that A MRI showed that another one had grown about the size of a nickel. She is now on IV based chemo cpt-11 and avastin and into ehr third treatment of 4 . She will get a MRI in two weeks and see if it is shrinking the tumor. I neglected to mention that she did have brain surgery before the radiation and chemo started at first. So really I just wanted to let you know that for her she has done pretty well. She does have some short term memory loss and lots of fatigue but thats about teh worse of it.I am praying for you and your family . Ihave been reading your blog for about 5 months now and wrote you once before. You stay strong and take care .