33 year old female patient from Greece

frossodimi
frossodimi Member Posts: 3

Dear all,

 

the time of my life to find someone to share the rest of it came last August. Then in the deep blue sea and sky of the Greek Island of Santorini i proposed to my girlfriend to be my wife. I proposed to her on a big rock emerging out of the beautiful sea during the famous sunrise of Santorini. She said yes with tears in her big beautiful green eyes. Last week an MRI showed an Astrocytoma measuring 4,5 x 5,1 in her right brain lobe involving or close neighboring the median brain artery. She is only 33 years old.We are both doctors but of other specialty. We have visited numerous surgeons in Greece to get an opinion and we are researching neurosurgical departments in Germany and Switzerland. Does anyone have any personal experience and if yes where exactly. And moreover, is anyone operated of an astrocytome grade III and lived to be an old man or woman....is it true that life expectancy after such a surgery is max 10 years ? Thank you all

Comments

  • mccindy
    mccindy Member Posts: 81
    no expiration date

    My doc says we don't have numbers stamped on us.  Each person is different and no one knows how each person's journey will end.  all you can do is live your lives together, enjoy your time and don't worry about the future (as much as you can).  There is no "max time".  I've talked to people who were diagnosed 20 years ago and are still alive with grade II and grade II Astrcytomas.  I have a friend on another forum who was diagnosed with a grade IV GBM four years ago and is still clear.  No one knows how long we have, all they can do is give us statistics.  I refuse to be given a number.  Don't let them give your fiance one either. 

  • frossodimi
    frossodimi Member Posts: 3
    mccindy said:

    no expiration date

    My doc says we don't have numbers stamped on us.  Each person is different and no one knows how each person's journey will end.  all you can do is live your lives together, enjoy your time and don't worry about the future (as much as you can).  There is no "max time".  I've talked to people who were diagnosed 20 years ago and are still alive with grade II and grade II Astrcytomas.  I have a friend on another forum who was diagnosed with a grade IV GBM four years ago and is still clear.  No one knows how long we have, all they can do is give us statistics.  I refuse to be given a number.  Don't let them give your fiance one either. 

    I would totally like to agree

    I would totally like to agree with you mccindy, but you see we had plans for making a family of our own. How hard would it be for our future children if her lifespan is limited. . . Do you or any other in the forum have experience of neurosurgey in Germany and if yes where and by whom. Thank you

     

  • mccindy
    mccindy Member Posts: 81

    I would totally like to agree

    I would totally like to agree with you mccindy, but you see we had plans for making a family of our own. How hard would it be for our future children if her lifespan is limited. . . Do you or any other in the forum have experience of neurosurgey in Germany and if yes where and by whom. Thank you

     

    time

    I don't have any experience with no in Germany sorry.

    I would address the other part of your commnent though.  Grade II Astrcytomas might grow back, they might not.  If they do, it can be 4-10 years before they do, and then they can be treated.  Imagine deciding not to have children and then she lives for 20 more years, with regret.  No one really knows the future.  People have children every day and don't know if they'll die in a car accident or choke to death or get some illness.  Life is a gamble, it really is.  Imagine the experience of a child having her as a mother, even if it is only for a few years. 

  • frossodimi
    frossodimi Member Posts: 3
    mccindy said:

    time

    I don't have any experience with no in Germany sorry.

    I would address the other part of your commnent though.  Grade II Astrcytomas might grow back, they might not.  If they do, it can be 4-10 years before they do, and then they can be treated.  Imagine deciding not to have children and then she lives for 20 more years, with regret.  No one really knows the future.  People have children every day and don't know if they'll die in a car accident or choke to death or get some illness.  Life is a gamble, it really is.  Imagine the experience of a child having her as a mother, even if it is only for a few years. 

    we are in germany at the

    we are in germany at the moment for the operation. i will let all of you know the details as soon as we are done.

  • I_Promise
    I_Promise Member Posts: 218 Member
    No one can predict the future

    Like stated above, no one knows with certainty how long one will live after a diagnosis such as this one. My youngest sister was diagnosed with a astrocytoma grade 3 in 2011 and she is doing wonderfully today, same as before her diagnosis. She does not want children (she did not want any before her diagnosis; it is a decision that has nothing to do with her diagnosis and everything about her lifestyle and what she wants to accomplish during her life). 

    I am so sorry that the love of your life has been diagnosed with brain cancer.

    The sooner she gets treatment, the better she will do. I don't know any Germain Neurosurgeons or neuro-oncologist. Let us know what she decides to do and how she is doing.

    You both have to be honest with each other and decide if you really want children. If yes, then you have to accept the possibility that you might parent was a single father in the future. Also, she has to act fast to preserve her fertility. Chemotherapy such as Temodar might or might not affect her (I know she cannot get pregnant while she is still taking chemotherapy because of the risk of congenital deformity). So she could either freeze her eggs for future use once she is done with treatment and her cancer is in remission or she could roll the dice later and she see if she can get pregnant after chemo. There is also, always, adoption.

    Anyway you look at it, it is very stressful and you and her have a thousand questions and probably feel like you are living a nightmare. And you are. I use to cry everyday. I ceased to believe in a higher power. I could not and still to this day cannot accept what has happened. But after two surgery, six weeks of radiation and chemotherapy, alternative medicine, we emmerged on the other side with a new normal. I don't cry every day and we live our life to the fullest. I know a woman who had children after being diagnosed with astrocytoma, 2 boys. She lived 20 years after her initial diagnosis.

    Be strong for your wife. Be her rock. Never panic and tell her that you will always be there for her. Research everything; interview at least two doctors at a Brain tumor center. She is young. Fight and never give up.

    J.