Germinoma brain tumor survivor Question

jay17_37
jay17_37 Member Posts: 1
edited March 2014 in Brain Cancer #1
I was diagnosed with a brain tumor at seventeen years old. I am thirty seven now. The tumor was erradicated with radiation and chemo. My doctors said the tumor could never return. Does anyone know what this prognosis could be based on? Can germinoa brain tumors appear twice in a person's life. What are the statistics for germinomas?

Comments

  • Vulgarism
    Vulgarism Member Posts: 47
    #2
    I also was diagnosed with
    I also was diagnosed with Germinoma,I refused radiation the first time, and was treated with chemo and a stem cell transplant. I was "cancer free" for about nine months, and before it came back once again. Doctor was pretty certain they had gotten it without radiation the first time, but did prefer to use some. He never said anything to me about it not coming back, only that the outlook was very good once it had been taken care of.

    Mine came back, however, and I begrudgingly agreed to radiation, though I can't say if it will will not come back, it did the first time for me, at least. Not to be such a downer. However, as it does sound like it was your first time, and you did have radiation the first time, hopefully it will not.
  • bubica1949
    bubica1949 Member Posts: 8
    #3
    Can you describe, please?
    Can you describe how you was filling that time when they discover that you have Germinoma. My son lost his short term memory, he walking so hard, left his bed only when he goes to use bathroom he sleep a lot His sodium is very high he can not drink fluid and I am thinking that he is in deep depression. Me and my husband trying so hard to back him but no success. Did you experienced something like this.? He is only 29 years old.
  • bubica1949
    bubica1949 Member Posts: 8
    #4
    hi Jay
    I am not sure that
    hi Jay
    I am not sure that you will see this but any way, I want you describe me your symptoms of Germinooma because my son has that kind of tumor.He went through radiation but 1 and 1/2 months after radiation not filling better not show any improve , he is a much worse then before radiation
    Thank you
    Bubica
  • zach sauve
    zach sauve Member Posts: 1
    #5
    bubica1949 said:

    hi Jay
    I am not sure that
    hi Jay
    I am not sure that you will see this but any way, I want you describe me your symptoms of Germinooma because my son has that kind of tumor.He went through radiation but 1 and 1/2 months after radiation not filling better not show any improve , he is a much worse then before radiation
    Thank you
    Bubica

    hello,
    i am 18 years old and
    hello,
    i am 18 years old and i was diagnosed with germinoma back in july of this year. Back in april i experienced double vision, and i was unable to look up. The symptoms were pretty sudden, easter day family noticed i was tilting my head back to look at them, went to my physician that monday, got sent to the eye doctor, eye doctor sent me for an mri that wednesday. The mri showed 3 fingernail size lesions. I went back and forth to the hospital for testing till june, (the last three months of my senior year of highschool). I was scheduled for a brain biopsey the week before graduation, but i fought to hold it off for 2 weeks. I had my biopsey july 8th 2010, it took roughly 3 weeks to be diagnosed. I am finishing my 4th week of radiation tomorrow. I have 2 more weeks to go. I felt horrible up until this week, the radiation to the spine really put me through hell, now i have just the cranial treatments, which sadly makes me thankful. Im not sure what else to say at the moment, i'd really appreciate some feedback or questions.... i have yet to discuss the topic with people who are in the same position.
  • shannonboo
    shannonboo Member Posts: 1
    #6
    zach sauve said:

    hello,
    i am 18 years old and
    hello,
    i am 18 years old and i was diagnosed with germinoma back in july of this year. Back in april i experienced double vision, and i was unable to look up. The symptoms were pretty sudden, easter day family noticed i was tilting my head back to look at them, went to my physician that monday, got sent to the eye doctor, eye doctor sent me for an mri that wednesday. The mri showed 3 fingernail size lesions. I went back and forth to the hospital for testing till june, (the last three months of my senior year of highschool). I was scheduled for a brain biopsey the week before graduation, but i fought to hold it off for 2 weeks. I had my biopsey july 8th 2010, it took roughly 3 weeks to be diagnosed. I am finishing my 4th week of radiation tomorrow. I have 2 more weeks to go. I felt horrible up until this week, the radiation to the spine really put me through hell, now i have just the cranial treatments, which sadly makes me thankful. Im not sure what else to say at the moment, i'd really appreciate some feedback or questions.... i have yet to discuss the topic with people who are in the same position.

    Hi Zach
    My son Jerry is a brain tumor survivor, he was also diagnosed with a germinoma brain tumor just before graduating high school. He had the same symptoms as you, blurry and double vision, I saw him tilting his head to read a book. He was also falling asleep at the drop of a hat, he would practically fall asleep standing up. Eye Dr sent Jerry for a brain MRI after looking into his eyes. MRI showed what the eye Dr suspected and Jerry was put into surgery for biopsy, results took so long to come back, probably a few weeks as well. Jerry was treated at NYU Medical in Manhattan, New York City. Four cycles of chemo and then we moved up to Boston to get Proton beam radiation at Mass General Hospital in Boston. He completed his treatment in August of 2007 and is doing amazing. He has 'slight' short term memory loss, which in the begining of diagnosis up until about 6 months ago was really bad, but now he's at about 90% good short term memory. He is doing well in college, attending school close to home......only because I won't let him go away, lol. We live on Long Island, New York. If you have any questions or want to speak with him email me at karen530@optonline.net and I will relay the message to him. He goes for him next 6 month follow-up in April 2011. He goes for Brain MRI in October every year, and Brain & spine MRI every April until 5 years out of treatment. As the Dr's told us "consider yourself winning the brain tumor lottery with a germinoma" follow the protocol and the chances of it recurring a VERY slim. don't hesitate to reach out to us if you have ANY questions. Live Strong~ Karen & Jerry
  • arjon75
    arjon75 Member Posts: 1
    #7
    shannonboo said:

    Hi Zach
    My son Jerry is a brain tumor survivor, he was also diagnosed with a germinoma brain tumor just before graduating high school. He had the same symptoms as you, blurry and double vision, I saw him tilting his head to read a book. He was also falling asleep at the drop of a hat, he would practically fall asleep standing up. Eye Dr sent Jerry for a brain MRI after looking into his eyes. MRI showed what the eye Dr suspected and Jerry was put into surgery for biopsy, results took so long to come back, probably a few weeks as well. Jerry was treated at NYU Medical in Manhattan, New York City. Four cycles of chemo and then we moved up to Boston to get Proton beam radiation at Mass General Hospital in Boston. He completed his treatment in August of 2007 and is doing amazing. He has 'slight' short term memory loss, which in the begining of diagnosis up until about 6 months ago was really bad, but now he's at about 90% good short term memory. He is doing well in college, attending school close to home......only because I won't let him go away, lol. We live on Long Island, New York. If you have any questions or want to speak with him email me at karen530@optonline.net and I will relay the message to him. He goes for him next 6 month follow-up in April 2011. He goes for Brain MRI in October every year, and Brain & spine MRI every April until 5 years out of treatment. As the Dr's told us "consider yourself winning the brain tumor lottery with a germinoma" follow the protocol and the chances of it recurring a VERY slim. don't hesitate to reach out to us if you have ANY questions. Live Strong~ Karen & Jerry

    My survival
    I was diagnose with a germinoma brain stem tumor in June of 2001. Up til that point I was diagnosed as having an inner ear problem. My stmptoms were vertigo, constant thirst, and frequent urination. After an mri and a long weekend of waiting I was actually releived to finally know what was going. I figured from the start of the symptoms to diagnosis was about 18 months. A 6 hour surgery, about 3 months of physical therapy, and 6 weeks of brain and spine radiation treatments I returned home. I still haven't figured out how all this happened. I grew up on Long Island, in Seaford. Continue being brave for Jerry, and will pray for him.
  • Vulgarism
    Vulgarism Member Posts: 47
    #8
    bubica1949 said:

    Can you describe, please?
    Can you describe how you was filling that time when they discover that you have Germinoma. My son lost his short term memory, he walking so hard, left his bed only when he goes to use bathroom he sleep a lot His sodium is very high he can not drink fluid and I am thinking that he is in deep depression. Me and my husband trying so hard to back him but no success. Did you experienced something like this.? He is only 29 years old.

    I don't think you were
    I don't think you were asking me, but ...I think you were asking how we felt at the time it was discovered? Before I was diagnosed, I had headaches often, and was also light sensitive like your son seems to be. My tumors were large, the size of a kiwi, so they were causing a lot of pain and headaches, along with crankyness. My sodium was probably always out of control, as I didnt know I had DI. I am not sure what else you are trying to ask an explanation of, however...or I'd try to help
  • Johnhallak8
    Johnhallak8 Member Posts: 1
    #9
    arjon75 said:

    My survival
    I was diagnose with a germinoma brain stem tumor in June of 2001. Up til that point I was diagnosed as having an inner ear problem. My stmptoms were vertigo, constant thirst, and frequent urination. After an mri and a long weekend of waiting I was actually releived to finally know what was going. I figured from the start of the symptoms to diagnosis was about 18 months. A 6 hour surgery, about 3 months of physical therapy, and 6 weeks of brain and spine radiation treatments I returned home. I still haven't figured out how all this happened. I grew up on Long Island, in Seaford. Continue being brave for Jerry, and will pray for him.

    Pituitary problems
    I was diagnosed with a germinoma in the brain when I was 15. My family noticed that I was getting up around 10 to 12 times a night just to go to the bathroom. I also began feeling lot of fatigue which I still am feeling two years later due to my lack of testosterone from the loss of my pituitary gland. I now take hormone replacement therapy every day which is around 8 pills, 4 times a day. I was treated with radiation on the brain and spine and have been cancer free ever since. I am still shocked that I got a type of brain cancer that only 75 Americans get a year, but the doctors told me that if you are going to get brain cancer, the kind I had was the kind you wanted because it is 90 percent curable. Be brave for Jerry. He is going to need you. I will keep him in my prayers. God bless.

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