Hi I am new hear. Just wanted to get some feed back. I am going to Moffitt right now. I have an Oglio Grade II found it Dec 1st 2010 by having partial seziures on my right side, due to having another infecition and high fever, they say it brought down my normal threshold for having seizurses.
Anyway. It is about 6 cent in my frontal lobe that i had 6 biopisies on to confirm the type and grade. They reccomend just watching it for now and doing surgery if it starts to grow, there has been no growth since then.
I have another small lesion, no biobsy done b/c of location near my midbrain only about a 1/2 cent. They say it is most likely the same. They don't really say much about it and not to worry about it, easy for them to say. They want to see me every three months I always ask questions and don't really seem to get answers.
I know moffitt is really a great place, i don't doubt that at all. Just want some feed back from some other people that have this. They say they will give do surgery when the time is right, and do chemo and radiation after that.
Hi Masons. I was diagnosed with an Astrocytoma II in 1962 (Astrocytomas are less dangerous than Oligos) and I took 13 months of chemo. After that, I went until 2005 before it recurred. In 2005, it was re-biopsied and found to be a mixed glioma (some Astro and some Oligo) 5cm x 5cm x 2cm (Vienna sausage size). I had surgery and removed most of the tumor. Now I have MRIs every 8 months. You are not an any major danger of having an MRI every 3 months. Oligo IIs grow so slowly that if it changes, it will only be a slight change. Believe me, I remember how anxious I was all the time between the scans. No, it is a piece of cake . I still get nervous for a few days before the scan. I keep track of any signs of growth. Like you, the primary sign will be seizures on the right side. I have had 1 about every year but only because I did not take my medication as prescribed.
Moffitt is not listed among the top Cancer Centers ( US News and World Report ) so, other pointing that fact out, I cannot offer any comment of their quality. If you are comfortable with them, then stick with them.
Thanks for the quick reply. They are ranked #18 in total cancer and have a top ranked neurosurgeon and is a top surgeon in the speech/brocha area so I guess i will stick them out. I just hate having it there and waiting all the time. Everyone says it will grow slow, but there is always a chance it will go nutz i guess, hince the getting it checked every three months. I do have the 1p/19q deletions, good thing. Just a lot to deal with. You know better then me. Thank again.
My oligo was discovered in July 2008 following a seizure. I had a single biopsy which showed the 1p/19q deletion and the sample was about 90% grade II and 10% grade III.
My initial oncologist also took a wait and see approach. When he suggested another biopsy a few months later, I went for a second opinion at a larger center. At that initial consultation, I was told their approach was to treat the entire tumor as a grade III if any of it was grade III. I had no surgery based on tumor location (left frontal lobe) but did IMRT/Temodar followed by 24 cycles of Temodar.
I am now 3+ years post-diagnosis with a substantially smaller mass that is stable and I'm asymptomatic though still on anti-seizure meds.
You need to find out if your tumor shows any indications of grade III cells which IMO is probable given the onset of seizure activity. Best advice I can give is to be as aggressive as possible with treatments and don't wait for it to get worse.
I had six biopsies, all came back as pure oglio and grade two was the worst of it according to two different pathology labs. I have had PET scans, a Spectro MRI, it shows no signs of growing, metabolizing and no blood supply. It is pretty big 5.5x4x4, same as you in my left lobe. The doc says that Temodar won't help b/c there is no blood flow to it.
I have seen two oncologist and three surgeons. They have all said the same thing. Two surgeons work together and will do the surgery when the time is right they say they can get some of it with no risk. Then the rest of it bisects the major artery in my brain and it goes right down my speech pathway. 15% chance of being not so hot after surgery, but thats when they say to do temodar and radiation is after surgery that will do any good. Thanks for your input. Glad to hear you are doing so well.
I have heard that temodar does really well when you have OA.
I was 37 at diagnosis. That's about the age when these things get found...
I was at first relieved to not have to jump into treatment, but as time went on and I thought things through, I'm glad I decided to be more proactive.
All the best!
Hey, another question for anyone. Do they ever use the CYBER KNIFE or Gamma on these tumors after surgery? I have no idea. Just a question for the people who have been here, has anyone had good results? Does this keep you from having other radiation procedures?
Very often. They use it because it is NEVER possible (unless they take out half of your brain) to remove 100%. Yes, if they give you the full treatment, it means that in the future you cannot have more radiation treatment to the brain. The restriction does not include low level radiation like x-Rays or a CT. Each organ has a life time limit as to how much radiation it can take.