It's back! I think...

Hey all,

Been a while since I last posted on here. I guess that's a good thing?

So just as a refresher, I was diagnosed in May 2011 with a grade II oligodendroglioma. Had a biopsy initially and then went on chemo (temodar) for a year straight, finishing this past July 2012. Had tons of MRIs every 2 months and tumor was always decreasing and life was great! And I got into a master's program at medical school, living my dream.

Toward the end of treatment, before they took me off the temodar, the tumor was only stable, no more decrease. But then this past November 2012, saw my neurooncologist at Duke (Dr. Peters!) and she said that basically, most of the cancer cells were gone and I should start saying that, "I had a tumor." Of course, I got a little excited and told all my family and friends, and we celebrated.

Now, only 2 months later, and my recent MRI showed a small change (i.e. a possible growth). Which has really bummed me out. Here I was, thinking that everything was back to normal and I was in control of my own life. It only lasted 2 months! Thought it would at least be a few years before any possible recurrence (as I'm told that brain tumors usually come back in a person's lifetime).

So they want me to get a PET scan done to assess this new area, however small it is. They want to see if the little change is something to worry about (like if it spread or become a different tumor type) or if it's just something to monitor. I'm hoping for the latter of course, but if it's the former, then they would want me to get a needle biopsy (instead of a craniotomy) and go back onto chemo. Apparently, they may have taken me off too early before. And unfortunately they can't do surgery because it's too risky. And I most definitely don't want to go through radiation.

I guess I've come to term with it, but it definitely and royally sucks. Temodar didn't really give me any symptoms, so at least I know what I'm getting myself into if I have to go back on. But I thought I would be able to enjoy my freedom from sickness a bit more and not have to be considered "sick" again. Which don't get me wrong, I don't behave or act sick and usually people have no clue that I have/had a tumor. And I'm in training for a 5k run in April to raise money for brain cancer research. So beyond the fact that it may trying to come back, I'm fighting to stave it off and going to keep my positive attitude and not let it get me down.

For anyone on here that can relate, I'd love to talk to hear about how you felt if you had a recurrence or just in general. Did you feel disappointed in yourself that you couldn't keep it off longer? Nervous about telling your loved ones (who thought you had a clean bill of health) that it has come back? And what about any anxiety you felt before they figured out what's changed?

Thanks and hope everyone is doing well and staying positive through this stupid, crazy, relentless disease. One day a cure will come. Just gotta believe it.

Peace!

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  • Hi. I cannot believe how much of your story sounds similar to my son's. He was diagnosed two years ago this month with Anaplastic Astrocytoma. He had tumor removed, received radiation, has been on Temodar for 21 months. Like you, he had MRI's every two months, and remained symptom free and went on about his life; returned to college, etc. He also raised quite a bit of money for brain cancer research at the run last year. This summer, a new tumor popped up and he was treated with Gamma-Knife radiation. It pinpoints the radiation to just the tumor. He was able to leave the following week for a two month internship in Singapore. The day after he returned, he had an MRI done. The following morning (on a Sunday), his Neuro-Oncologist called him to tell him that the good news was that both tumors were gone! We all took a breath of relief and had a wonderful month "off". The very next MRI showed yet another tumor in the cerebellum. He went through Gamma-knife on that one as well. All three tumors have not returned, however, areas around the third one show that it is spreading. He has been experiencing horrible symptoms from it. We found out last Thursday, that because he has responded so well to radiation,the Doc wants him to go through 4-6 weeks of radiation again. In his Doc's words "I need to hit you with a 2x4." My son has agreed but as you can imagine, very discouraged. I plan to do everything I can to help keep his spirits up as he has been such a trooper, but I also want him to know that it is perfectly fine to be bummed and need support. He isn't the type to ask for any special attention from his friends, and he has not felt well enough to go do stuff, so I did contact his best friend and gave him the heads up. His friend was thankful and is more than willing to rally. I tell you all of this because you deserve to be supported right now, but people don't know unless you tell them. Specially, like my son, if you have been "managing" okay until now. Also, you may want to check into the Gamma-Knife procedure as it has worked so well for my son. I will pray that you get the support and keep your positive attitude. God bless. Keep us posted. Jo He
    Chersen;7672 said:
    Hey all,

    Been a while since I last posted on here. I guess that's a good thing?

    So just as a refresher, I was diagnosed in May 2011 with a grade II oligodendroglioma. Had a biopsy initially and then went on chemo (temodar) for a year straight, finishing this past July 2012. Had tons of MRIs every 2 months and tumor was always decreasing and life was great! And I got into a master's program at medical school, living my dream.

    Toward the end of treatment, before they took me off the temodar, the tumor was only stable, no more decrease. But then this past November 2012, saw my neurooncologist at Duke (Dr. Peters!) and she said that basically, most of the cancer cells were gone and I should start saying that, "I had a tumor." Of course, I got a little excited and told all my family and friends, and we celebrated.

    Now, only 2 months later, and my recent MRI showed a small change (i.e. a possible growth). Which has really bummed me out. Here I was, thinking that everything was back to normal and I was in control of my own life. It only lasted 2 months! Thought it would at least be a few years before any possible recurrence (as I'm told that brain tumors usually come back in a person's lifetime).

    So they want me to get a PET scan done to assess this new area, however small it is. They want to see if the little change is something to worry about (like if it spread or become a different tumor type) or if it's just something to monitor. I'm hoping for the latter of course, but if it's the former, then they would want me to get a needle biopsy (instead of a craniotomy) and go back onto chemo. Apparently, they may have taken me off too early before. And unfortunately they can't do surgery because it's too risky. And I most definitely don't want to go through radiation.

    I guess I've come to term with it, but it definitely and royally sucks. Temodar didn't really give me any symptoms, so at least I know what I'm getting myself into if I have to go back on. But I thought I would be able to enjoy my freedom from sickness a bit more and not have to be considered "sick" again. Which don't get me wrong, I don't behave or act sick and usually people have no clue that I have/had a tumor. And I'm in training for a 5k run in April to raise money for brain cancer research. So beyond the fact that it may trying to come back, I'm fighting to stave it off and going to keep my positive attitude and not let it get me down.

    For anyone on here that can relate, I'd love to talk to hear about how you felt if you had a recurrence or just in general. Did you feel disappointed in yourself that you couldn't keep it off longer? Nervous about telling your loved ones (who thought you had a clean bill of health) that it has come back? And what about any anxiety you felt before they figured out what's changed?

    Thanks and hope everyone is doing well and staying positive through this stupid, crazy, relentless disease. One day a cure will come. Just gotta believe it.

    Peace!

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