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inoperable now they want to operate

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

7 months ago my sister was dx with GBM 4 they said it was inoperable it was deep with in the white matter, She did radiation temador and some avastin. The radiation was cut short one day. The temador was cut short one week during radiation and we only got 2 cycles of the 5 day temador, I think we got avastin 3 or 4 times. The tumor grew. Now today the same doctors that said no to operating are says they think we should operate. Im scared. I dont have any facts about what was said today. Dont know what my sister plans to do. Looking for some thoughts on this...

micgrace
Posts: 131
Joined: May 2011

I suggest to support your sister in whatever decision she wants to make. Operate? Partial removal plus additional radiation and chemo buys additional time. How much? I have no idea as GBM is truly a dreadful disease. There is nothing I can say, suggest or otherwise that is going to make the process any easier. I am truly sorry for this turn of events.

connsteele
Posts: 232
Joined: May 2011

What a quandary. What's hard is that it is that, in the end, it is your sister's decision, even though you might have another opinion. Would she agree to a second opinion re: surgery? Sometimes I wish we had gotten a second opinion re: our son's surgery. But it is such a whirlwind when one gets a diagnosis like this. Hard to make logical, thought-out decisions. Even before his surgery, the neurosurgeon said that surgery wouldn't make things go away. If he did remove all the tumors and their tentacles, which I assume is a characteristic of AA3/GBM, then David's entire cerebellum would have had to be removed, and he would be a vegetable. What kind of choice is that? After the surgery, the surgeon said he was able to debulk the main tumor close to the surface, which did improve our son's symptoms, for a while, until the radiation, which made things worse...really worse for a while.

For our sanity's sake, I have to have faith that we had a very competent, up-to-date surgeon. We were in the Washington DC area at the time, not some backwater place without access to research centers like NIH and Johns Hopkins. I assume that docs there do talk to each other?

However, I still wish we would have gotten a second opinion before the surgery. Can't do anything about that now.

Hope things even out for you and your sis.

I_Promise's picture
I_Promise
Posts: 208
Joined: Aug 2011

Did they explain why the suddent choice reversal? The logic behind it?
If you have time to seek out another opinion, do it. Send her MRIs do Duke, Hopkins, or NIH or any Brain Tumor Center. (get your sister to sign the release form and take care of the rest of the bureaucracy).

If they tell you there is no time (i.e swelling in the brain, etc..), then your sister needs to make the decision. But you as a oncology nurse can influence her. You know more, you are not sick, and therefore you can make an informed decision not based on fear or fatigue.

Good luck. Keep me informed. I will be thinking of your sister. Love,

Julia

4theloveofmysis's picture
4theloveofmysis
Posts: 248
Joined: Apr 2011

I didnt get to talk to anyone. Im the baby sister here and she will not listen to me at all these days. The tumor grew and there is more swelling. They think that it is the best thing to do now. Or so my sister said. Its growing even though we didnt get all the chemo they thought it should of responded and its not. My hands are so tied here. She told me that they want her to deside by Sunday, with out much info. She is not really clear right now.Im lost...

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