Apr 30, 2011 - 12:40 am
I'm looking for similar experiences or support with this. I posted this on another person's comment, but I don't think this is what she was looking for. And I am looking for something myself...
I have a stage II Oligodendroglioma, and have 1p, 19q deletion. My tumour is on the left-frontal lobe, right up against my motor strip, so have suffered a lot of seizures. I was DX in 2007 after frequent seizures. The tumour was the size of a golf ball. I was 38 then, 41 now. I had awake surgery in Nov 2008 and was put on a trial, so I took Temodal (Temodar) for 2 weeks prior to my op, then a few months later I did 10 months. In that time, the tumour was showing shrinkage. I had an MRI last week, and my neuro-oncologist told me two days ago that there is evidence of regrowth. I feel so unlucky because they had always said I would live to a ripe old age, but nothing I read points to that if a recurrence occurs. They only managed to get 85% of the tumour anyway, but they were doubtful at the time that it would grow anytime soon. Well, I find this to be pretty quick!! Makes me think twice about really pursuing a career, or just enjoying life and be as stress-free as possible.
I did so much research before my op, and even had two surgeons at one point, and they were both giving different opinions. One said radiation and chemo was my only choice, the other said he could operate but didn't think I should go down the radiation-chemo road. I chose the latter surgeon, had the surgery (awake surgery isn't bad at all!), but I chose the chemo.
The reason I didn't choose radiation is because they said it was a one-off thing. That feels like my trump card... if all else fails, get the radiation. I was due to have radiation before my op, but I cancelled the day before the head-fitting. I just felt that it was the wrong thing at the time.
After being told 2 days ago that there is new growth scares me, and just puts me back at square one (well, that's how it feels).
I'm scared, everyone on here seems to have someone in their lives, and I'm single, can't drive due to seizure disorder and don't know that I can go it alone. I have had to move back in with my mother due to my long rehab, and am so tired all the time. I started a Masters degree 2 years ago, and I finish it in a couple of months. Now I don't know what to do with it!
Sorry, I'm not being very helpful here, feeling rather negative at the moment. I feel lucky that it's not a more aggressive type of tumour, but I feel like there's no point in saving for retirement :-(
They say that this is the slowest growing type of tumour, yet they found lesions in 2004 and they wanted a wait-and-see approach. It took 3 years for a lesion the size of a pin to grow into a golf ball. Now that I still have that annoying 15% left, and it's growing, who knows how long it'll take until I'm back to having seizures all the time and have to potentially have surgery and go through that awful year of physical rehab. I'm still very weak on my right side.
Sorry for the long post. Be positive everyone, I'm trying! Being single doesn't help. I can't depend on my mother, it's too much stress on a lovely lady who should be enjoying her retirement.