One patient with glioblastoma still alive nine years later
by sallyelena on Thu Jul 08, 2010 12:46 AM
Another question, So he went to the cancer clinic today...and nothing detectable on ct scan. He does have the chromasome deletions, but they are not doing anything. he now has to go back to his neurosurgeon once in a while to get MRI's done to see if any change. So is that it? if it never comes back, is it over now? I do not understand this at all. WIll it for sure come back? is he cancer free at this point? is there a chance it never returns and this is just all over now? they are not doing any treatment, he is on dilantin only. If it never comes back, is he then cured of all cancer period? is it possible to be so slow growing that he has 80 years left? should he go back to work and just go on with life like normal?
by mominoh on Thu Jul 08, 2010 01:10 AM
The reason he has to go back for MRI's is because they want to catch it fast when/if it comes back.
For some people it does come back, others it doesnt. My mom had a co-worker who's teen son had oligo (not sure what grade) they removed it, because its a benign tumor and not malignant cancer he didnt need any treatment after his surgery. But it was rather big, so he suffered some damage and needed rehab, he bounced back pretty fast. He went to school, finished college, has a great job, wife and children no sign of the cancer... but he does have MRI's to make sure its not coming back.
by mommamin on Thu Jul 08, 2010 01:19 AM
Gliomas tend to be very infiltrative by nature, so even though it looks like they got all the cells, there are sometimes cells left behind which will then grow. That is why they continue with follow up scans. However, because the tumor was low grade, chances are good that he may never have a recurrence.
He will have to continue with MRI monitoring to be safe, but he can now go on with his life. Congratulations, this is great news....he may very well outlive all of us!
by I_love_Gary on Thu Jul 08, 2010 04:34 AM
On Jul 08, 2010 12:46 AM sallyelena wrote: Another question, So he went to the cancer clinic today...and nothing detectable on ct scan. He does have the chromasome deletions, but they are not doing anything. he now has to go back to his neurosurgeon once in a while to get MRI's done to see if any change. So is that it? if it never comes back, is it over now? I do not understand this at all. WIll it for sure come back? is he cancer free at this point? is there a chance it never returns and this is just all over now? they are not doing any treatment, he is on dilantin only. If it never comes back, is he then cured of all cancer period? is it possible to be so slow growing that he has 80 years left? should he go back to work and just go on with life like normal?
On Jul 08, 2010 12:46 AM sallyelena wrote:
Sally, I would tell you that he 'should' go back to his work and his life, like normal. I would also tell you that the tumour might not be back for many years. I would tell you that he is now as cancer free as the surgery made him. I would not tell you that there is any possibility of him being cured. This tumour does return, at SOME point, either at the same same slow growing grade, or at a higher grade. It might be 20 years down the road. It is good that he had the low grade tumour now. He is young and healthy, and with years ahead of him, with new drugs and treatments, it might be in his lifetime that we can start using the word 'cure'.
Surgery alone, being careful to not cause any deficits, is the first line of treatment, and usually they wait and watch afterward. Sometimes they will treat with chemo, but don't like to radiate. It sounds like in this case they are confident that they got 'all' of it. Eventually, he will learn to live with uncertainty, with a degree of fear, and if you stay with us here on this site, you will find people of every different stage, lots of folks who've had many years of the low grade, and now are dealing with the inevitable recurrence.
I don't think it's fair to tell you that it might not ever return. I sure hope that some day we can say that though. KEEP THE HOPE. DL
by sallyelena on Fri Jul 09, 2010 02:41 AM
I really really really hate this whole situation!!!
by I_love_Gary on Fri Jul 09, 2010 03:23 AM
We all do hon. I would fix it for you if I could. Heck, I want my husband back just the way he used to be!!!!
You can get angry but it won't change a thing I'm afraid. Go ahead and let us have it........we understand.
I wish hope and strength for you, and peace with the future.
by Gbm_Wife on Fri Jul 09, 2010 04:28 AM
I am not sure if you are in the U.S. I would get a second opinion at a major brain tumor hospital. A list can be found here
Get the tumor slides and get another pathologist's opinion on them as well. A CT scan generally is not used to detect tumor. It is used to check hydrocephalus. An MRI with and without contrast will check for tumor. My husband had a CT scan in the ER when he had his first seizure and it was not detected. I have heard this from others.
by stomp43 on Sat Nov 10, 2012 02:46 PM
Sorry to be a downer. But any kind of Melignant Brain Cancer will return.
There will always be tumor cells left behind in the tumor bed after all treatment is exhausted.
The only hope seems to be in combined therapy, and vaccine.
we need to target MGMT expression and signaling pathways of mutant cells.
We also need to create rogue cells that attack the mutant cells, leaving healthy tissue unharmed. This can be achieved by introducing altered cells to seek and stop the mutation of newly dividing cells.
I am a grade 2 Oligo also and have found, through research that radiation and chemo alone are not the answer, taking all the statistics into account the benefit of these treatmens do more harm than good and adversly impact quality of life.
There really is no true answer. be up on your options and support clinical trials. You may have to travel to have them available to you, but you may be rewarded.
Don't always rely on the three magic bullets, chemo, ressection and radion as the answer. Do your homework but don't let it consume you, just educate yourself and remain positive.
Still God Bless our wonderful Doctors and all there effort.
Love and much Hope,
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