brain tumor in remission

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RE: brain tumor in remission

by alyuva on Thu Feb 02, 2012 02:59 AM

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It's all in the way you look at it. Many non-medical and non-cancerworld people think remission is equal to cancerfree. "Yay me! I'm cured!" 

I think it is realistic not to use remission. Beside the legal/professional thing, there is also a purpose to saying that I am 'stable'. For example, I am stable but not brain healthy (at least not like pre-tumor). Since my tumor was inoperable there is no way to open my head and see if the tumor is dead. All we know is that for now is that it's not growing. And for that I am profoundly grateful. 

Not matter what words we use, brain tumors are horrible. They can change your life forever. They can alter your ideas of who and what you are forever. The new normal is hard to take sometimes but stable is living and life is good. Praise God.

Sorry I got a little carried away. That;s what happens when I post late at night. 

RE: brain tumor in remission

by jon4156 on Fri Feb 03, 2012 06:31 AM

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On Jan 30, 2012 12:51 AM mollie924 wrote:

It is similar to the medical term "purpura" which in layman terms is "bruise".  I think it would help layman if medical professionals used terms that the average person could better understand and comprend their situation. They have to bring the nomenclature down to the level of the average person.

I think specificity is important and the problem with the term "remission" is that I'm not sure everyone has the same connotation of the word.

It wouldn't make sense to say something was in remission unless no growth was observed at the same time that no treatment was being performed.  Shrinkage of a tumor while under treatment is not remission but a result of the treatment having a positive affect on the cancer cells.  The definition of remission by the National Brain Tumor Society states that the cancer has entered a "phase" in which growth has stopped.  I think logically that implies absent treatment.

You didn't state whether your husband was still under treatment or not.  If he is not, then I think you are correct and should ask you doctor if he were comfortable talking about your husbands status using remission. 

 

RE: brain tumor in remission

by mollie924 on Fri Feb 03, 2012 04:31 PM

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You are absolutely right - I would not expect to use the word remission until all treatment is stopped.  My husband has 3 more months of temodar before his year long therapy is over. It comes down to semantics. Progression free survival means nothing to a person who does not read the medical articles.  Progression free means no tumor growth and the definition of remission means no tumor growth.  I do not see the harm in using both words.

RE: brain tumor in remission

by debistars on Tue Feb 21, 2012 09:16 AM

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Hi,

My daughter has just been told she is in remission after her last MRI showed no change , she is four years since diagnosis and three years off all treatment , her tumor was inoperable and shrank by 50% after treatment but since has showed no change , her consultant said that she does not need to have any more MRI ,S unless she feels there is a change or would like one , the term remission is a great benefit to her as she can now apply for jobs and stands more chance than declaring she has a Terminal disease ,and also will help for insurance ,for travelling etc ...and above all it has given her a different outlook ..of that she can live with this disease ........

Debi mum of Jossi dx aged 23 2008 GBM inoperable

love and hope to you all with this battle xx

 

RE: brain tumor in remission

by mollie924 on Tue Feb 21, 2012 05:20 PM

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It is wonderful to hear that your daughter is doing so well.  That gives everyone on here more hope.  Psychologically it helps alot if a person is told they are in remission from cancer. "Progression free" does not have the same effect as the word "regression" for a lay person.  I wish her continued good health.

RE: brain tumor in remission

by clg62084 on Wed Feb 22, 2012 02:19 PM

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My husband was diagnosed June 2010, radiation, a yr of temodar, and a debulking, pneumocystis pneumonia, you name it, he had it, almost lost him a few times. We travel to Duke every 4 months now, along with monthly visits to our dr in STL. We were told at Duke last week, that Steve's tumor has shown no sign of regrowth. Every MRI looks better than the last. Every clean MRI gives us a better chance of NEVER coming back. Right now he said 30% chance of coming back. Drs wrote on report " glioblastoma - remission". We know it doesn't mean it is gone forever, but, it means something to us. Considering, where we thought we would be in June 2010. We'll take it!!!! God is Great!

RE: brain tumor in remission

by jon4156 on Thu Feb 23, 2012 03:36 AM

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Amen!

 

RE: brain tumor in remission

by ravirajagopalan on Thu Feb 23, 2012 03:42 AM

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Wow, that is wonderful. Good luck to her - hope she lives a long long and healthy life.

RE: brain tumor in remission

by tromda on Thu Feb 23, 2012 05:06 AM

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Gosh, reading all these post sure fills a person with hope!  I am so happy to hear all of the positive reports. 

For all of you that are in remission, would you say that you feel the same as before?  I'm just really curious if your personality is the same as is was it prior to treatment. 

RE: brain tumor in remission

by lucyat24 on Thu Feb 23, 2012 07:03 PM

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On Feb 23, 2012 5:06 AM tromda wrote:

Gosh, reading all these post sure fills a person with hope!  I am so happy to hear all of the positive reports. 

For all of you that are in remission, would you say that you feel the same as before?  I'm just really curious if your personality is the same as is was it prior to treatment. 

My husband has been back to work full time for almost a year now, but the fatigue is still there.  I don't think that will ever go away.  There are also personality changes that I'm sure are permanent.

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