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Astrocytoma

Fri, 09/08/2006 - 08:05
Ok ladies i have posted before but i havent been on for a while. Just so you know i have a 2 year old daughter, when i became pregnant with her i started having seizures, and they told me that i have epilepsy. Well in June i had 3 seizures in a row and while at the hospital they did a cat scan, i had a high fever and bad headache, which i knew the headache was from the seizures, specially that many in a row ya know. Well the doctor comes and tells me that i need to make sure that this cyst, that was located on the right side of my head in the back, i needed to make sure with my doctors that it hasnt changed at all. Well i was like wait a minute i was never told anything about any cyst and he just kept telling me i needed to talk to my doctor. Well the next day i went to my doctors well he talked to me about it and said he wanted me to go to a nerologist and so i did and he was great but right away he told me that it wasnt just a cyst that it was a tumor so i was kinda freaked out ya know. Well then he sent me to a nero surgen who told me that it was a small tumor and it had a rather large fluid filled cyst with a tail around it and he scheduled surgery in 2 weeks and mris and stuff. Well a week after the surgery i called to see if they had the biopsy results and my nero surgens assistand said not yet and then the next day my actual nerosurgen calls me an tells me it is cancer. When i first talked to him he said there was a 5% chance that it would be cancerouse and that there was a 75% chance no more seizures, well i have no luck. So now i get to have mris every 3 months for the next ten years and along with the list of docs i have i now have a cancer doctor whos great. Its just so not fair i am 22 years old with a whole life ahead of me. There no going to do chemo or anything right now because they removed the whole tumor but if i get more there going to either have to do surgery again or chemo or the other crap. Well i need to go ladies please feel free to post.

Comments

Re: Re: Re: Re: Astrocytoma

Submitted by KyliesMom on Sat, 2006-09-09 - 08:03
Thanks hun i really appreciate you replying and being so sweet and so kind it means alot to me when there are others out there that truly understand. I mean my husband does but some times it helps to talk to strangers that maybe know what you are going through. Before my surgery my step mom and dad were acting like i was going to die there were telling me to do a will which i know i need no matter what but and telling me a i need to figure out who i want my daughter to go to, of course her father you know. But it wasnt helping at all i had high blood pressure already and they were just adding to that and the stress lol. But i had my follow up yesterday its been 6 weeks and he told me oh that that its not the same cancer i mean it is astrocytoma thats the short version but its a different kind and this kind is a higher risk of reacurring i just kind sat there for a minute and just sucked it up and went on with the oppointment. Thanks again hope to keep talking to you. you sound very strong too. Fawn

Re: Astrocytoma

Submitted by sweetlpn79 on Sat, 2007-10-13 - 18:09
Sorry to hear/read about your experience. I have a similar story. About 6 years ago I was diagnosed with epilepsy, and during the normal rounds of tests, an mri showed a "small cyst, fluid filled, in my right temporal lobe, which explained my seizure symptoms. The docs thought that it was a very minor cyst, no big deal, would watch it for a while with mri's to make sure it "didnt do anything" and treat me with meds for my seizures. So the journey began and I was only 20. I kept asking the md's about surgery to remove it, if it was not suppose to be there then I wanted it out, however, they thought that was a bit extreme. Skipping forward a few years, my seizures are out of control, I was taking 2 different meds (16 pills total) to try and control them, and was still szing 4-5 times a day. My neurosurgeon recc. surgery to remove my right temporal lobe, and resect the cyst. So on the 10th of sept. that is what we did. The cyst was sent for pathology, but no one thought it would be anything. Went for my 4 week after surgery check up yesterday, and good news, no seizures since surgery, however, found out that the "nothing" cyst is a grade 2 astrocytoma. So, hard to say what the future holds, my surgeon is not sure that they got it all, so I will follow up with the oncologist in Dec, for another MRI and appt to discuss where to go next. Good luck, keep ur head up, and eyes on Jesus. I will keep u in my prayers. If u ever wanna chat, my email is [email protected] Thanks for sharing, it makes me feel more normal to realize I am not alone and other people feel crappy about their illness at times also

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