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oligoastrocytoma Grade II survivor 12 years

Scottdoh
Posts: 2
Joined: Jan 2012

Hello everyone I'm new to this site but I wish I found it sooner.

My name is Scott I was diagnosed with a brain tumor in fall on 1998 it was a cancerous oligoastrocytoma grade 2 I only warning was a grand mall seizure in my sleep and I had waken up with blood on my shirt. At the time I was only 23 so I didn't have a clue that anything was wrong. I went to work like normal that night with a really bad headache but thought nothing of it. The next day I decided to go in and have it checked out and with the cat scan and then the follow up MRI they reveled a Brain Tumor. I was hopitalized immediately with the doctors deciding what to do. to make matters worse I had just started a new job so I never Cobra-ed my insurance. But anyway. They performed the sergury and took out the tumor. I was told that if this same thing would have happened 10 years earlier there would have been nothing they could do. As it was there was no known Chemo's or Radiation at the time of surgery. I was also told that it was a grade 2 cancer that took about 5 years to grow. If it was to return it would be about 5 more years. Fast forward 1 1/2 years later at my job I was interviewing a person for a potential job when all of a sudden I had this strong sensation of being electrocuted witch came and gone when I was interviewing him I didn't want to lead on that anything was wrong so I just continued interviewing him and talking. Then It came back so strong I knew something was wrong but I didn't know what. Next thing I knew I woke up in the emergency room. I had collapsed and had went into a comma then was rushed to the ER. Here we go again. The ER staff asked me, "Scott" do you know where you are right now? I looked up at all the equipment and said yes I'm in the ER again. Not 5 years later but only 1 1/2 years later. Well this time they wanted to be a little more aggressive and they started out by putting a grid in my head to see what areas of the brain the tumor was affecting. When they pressed button 1 and 2 it had affected both my throat mouth and tongue. So they knew they were not going to be able to operate in those areas. they contemplated having me awake for the surgery or being put out and both times they decided to put me out. Again I had the procedure done to remove the tumor and they had successfully removed 90-95 percent of it. This time it was the size a golf ball but it was reported that it still was a grade 2 it had not changed. Prior to this the MRI revealed that there was NO Tumor what so ever, so that proves that you can't always go by the MRI scan it never showed up even though it was still there, Scar tissue from the previous surgery might have covered up that area and that is the reason why they could not see it, maybe. But this time there was a radiation that they tried in me and it went ok. But still no known chemo treatments except for some experimental ones.
Well now what! it's been almost 12 years and I've been cancer free. I continue to have my followup MRI's yearly if not sooner. But after my Radiation treatments after the second surgery I noticed a few changes around me. I was very sensitive to the sun, I had very bad headaches, migraines, dizzy spells, and other complications. Because I was out of work so long with the surgery and Radiation I had lost my job. So I had started over at a retail store but it was very tough for awhile I was still healing from the second surgery, the first surgery went fast and I healed up to 100 percent in 5-6 Weeks the second surgery was not the same 12 years later I'm still not the same I still have random seizers, headaches, spasms on my left side, Etc. I've been on many different medications to help control the different problems. I always tell people to be fully honest with your doctors and even if they look at you funny when you describing something just ignore them and continue on. I live in Rochester Minnesota land of the world famous Mayo Clinic and even though they are not perfect "who is" they come pretty close. I have a great understanding doctor by the name of DR Jeffery Brittan he is my second doctor to tackle all of these problems. the important thing to remember is have your doctors bump their heads and really think about what they want to do unless its an emergency then you have no choice. Use the internet as a helpful resource to find out more about what kind of cancer you have, what treatments have worked in the paste even if you have to get a second opinion. At the time this happened 6 months later I had known someone with the same exact tumor the only difference was that it was in a spot that they could not operate. But with the advancements in the medical field there hopefully will be more options in the future.

I hope anyone that has this terrible Tumor/decease will see this and realize that with the right treatments you can live a somewhat normal life. I'm living proof that even though you get this decease twice I'm to stubborn to let it get the best of me.

Sincerely,

Scott D

mermaid678
Posts: 10
Joined: Dec 2011

Hello my boyfriend was recently diagnosed with grade II oligodendroglioma with some astrocytoma cells. Unfortunaly it is right on top of his thalamus and about 5.5in. Everywhere we have gone the doctors say they cant remove it. They are just going to observe it and give him chemo and radiation when he needs it. He is only 23 and it pretty much is like our lives have stopped because they cant remove it. The doc said people with his tumor 37% live for 5 years. We are very scared. What would you suggest? Do you think a doctor somewhere may be able to remove it? - Susan

osuphd_60
Posts: 1
Joined: Feb 2012

My husband was diagnosed with glioblastoma Multiforme (in the left temporal lobe) a little under 2  years ago.  We did extensive research, and concluded that Dr. Berger at University of California at San Francisco (UCSF) was considered one of, if not the very best brain surgeon in the U.S.    I wouldn't hesitate to contact them and ask if you can send a copy of the MRI for review.  If UCSF is too far to travel, one of his protoge's (who practices in Oklahoma City, OK is Dr. Michael Sughrue, who successfully removed 95% of the tumor after our first surgeon had told us that the tumor was inoperable.  You are wise to look for the best surgeon.  Skill sets vary drastically from one surgeon to another.  

 

xmacar
Posts: 4
Joined: Jul 2012

Thanks for sharing your experience Scott. Very encouraging!

liu8720683
Posts: 1
Joined: Mar 2014

Scott,ery 

 

Your story is very encouraging, I had oligoastrocytoma grade 2 on the right frontotemporal. I did surgery and radiation afterwards. I still have radom seizures until now. I wonder how long did the radiation take effects on your tumor? I have done the radiation for 4 months, and I had a major seizure 2 weeks ago, which made me panic. But I'm fine so far and I didn't even have mild seizure in the last two week. I didn't take medicine and sleep well before my last major seizure. I am not sure if that's becasue the seizure became worse or simplely becasue I didn't take my medicine and sleep well.

holly rachelle
Posts: 3
Joined: Apr 2014

I am 22, and have a 2 yr old little boy Jordyn, he is my rock when I am weak, I don't know if I would still be alive if it wasn't for him! I was diagnosed with a brain tumor in August of 2010, four years later after so many tests and trials I had a biopsy done because I was having anywhere from 8-30 mini seizures on my left side a day. it was taking over my life and not making it possible to raise my son the way I knew I was capable of. I havent been able to get a job for over a year and a half now and social security has been pulling through a loop. The Dr. said when they did the biopsy that they removed what was pushing against my skull and  causing my sezuires to become so intense. It was sent off to Pathology and came back as an Oligo Astrocytoma grade 2. It has taken over my whole right temporal lobe and is inoperable due to all the nerves it has taken over. I have been doing double therapy of radiation and chemo since March 11th. I finished radiation on April 7th, and have to do chemo for another 8 months. They wont be able to completely delete the tumor but get it down in size. The tumor will come back within 1 to 10 yrs and it will be a higher grade tumor and more aggressive. I am on my fourth different anticonvulsant and it luckily hasn't made them worse unlike the rest have done in the past. I am staying positive for not only my wellbeing but for my son ultimately!! It has been a jouney to say the least but with my faith in God, and reading your story Scott and the others who have shared it puts me in better spirits, thank you!

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