Where to go- CarePages

Where to go?

Posted Jan 13, 2012 12:17pm
Edit: REPOSTED FROM CAREPAGES (again that support group was with the San Diego Brain Tumor Foundation)

Last Tuesday Sean and I spoke with the surgeon who did my last surgery at UCLA. He explained that after looking at my MRI images with the radiologist there is about 50% of the tumor remaining. He did a great majority of the surgery based on feel as the tumor felt different than the normal brain tissue, so he thought he got it all out, but he didn’t and he wanted to be conservative and not damage my brain.
We then went to UCSD to see another neurosurgeon and oncologist. The neurosurgeon said he could remove the tumor by doing a fromtal lobectomy, where he would remove some of the good brain tissue as well as most of the remaining tumor. The oncologist thought there may be too much risk in that of me losing more of my short term memory or having some weakness on my lefthand side again and the neurosurgeon agreed and said that surgery could be done at anytime so we could wait on it.
The oncologist thought that we should do radiation and chemotherapy. He also gave me a timeframe of 3 to 8 years to live, ugh. We have met several people in the support group who have done radiation and they do a mild radiation since the tumor is so close to the surface and that way any good brain cells damaged have time to heal before the next treatment.
We went to a support group after the doctor appointments at the Moores Cancer Center at UCSD, where most people have seen the two doctors we saw there. From what we gathered it seems like UCSD is a little more aggressive and UCLA is more conservative in their treatments. They really seemed to push their clinical trials in which the one I qualify for I would have a 50% chance of getting just radiation or getting radiation and chemo. Or we can pick the treatment we think is best.
Right now I am at a place where I want to attack this thing and be aggressive so I have more time in the future with my children. I have an appoint next Tuesday at UCLA with Dr. Linda Liau, a surgeon who has seen my MRI and thinks she can get the rest of the tumor out.
So right now I just pray that God will guide me to the right decision. We have also switched our diet to be macrobiotic (very close to Vegan) as so many cancer patients report a reversal of cancer or that it stops growing while on this diet plan.