i'm posting this again in the current forum cuz i got no response on the general board. sorry for duplication.
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hi all,

things seem to have taken a turn for the worse on our end. i'm interested in hearing your thoughts.

chronology: my sister had a CT scan last friday, we had an appointment for 2nd opinion at USC on wednesday, met with a radiation oncologist from Loma Linda today and will be meeting with my sister's primary oncologist for decision-making on monday. 3rd round of chemo which was to be started this week has been put on hold until after our decision-making meeting.

the USC surgeon said because the growth has spread to the skin and the location of new tumor is so close to the main artery, prognosis is very poor. a second surgery would be risky and much more extensive (removal of lower left jaw and facial muscles) and reconstrution more difficult requiring muscle and skin grafts. and chance of recurrence ramain very high so he's not necessarily recommending surgical option. in his opinion my sister has 3-5 months left. we're now waiting for a comprehensive opinion from their tumor board.

radiation oncologist said because the recurrence is on the same side that has already been irradiated, another round of radiation is not likely to be considered, and proton beam radiation or IMRT wouldn't make a difference in this case. he's asked to see the original radiation films to give a final opinion.

my sister's oncologist has directly consulted MD Anderson re new/alternative chemo protocols. the only suggestion was new drug herbitax (spelling?) combined with radiation. in an informal conversation with him yesterday, he told me that because the recurrence is still local (same side as the original), there might still be a chance to control the growth through chemo and/or radiation. he thinks this will probably only buy time as the cancer is too agressive to hope for remission. how long will this buy? uncertain.

needless to say this has been a very difficult process. my sister's physically and emotionally tired of treatments and devistated by all she's been told. we're trying to tone things down this weekend and clear our minds before going in on monday to talk to my sister's oncologist.

i would like to hear any thoughts, but more specifically any advice in terms of questions to ask in the meeting and issues/options to consider in making decisions regarding what course of action to take from this point on. thank you for any feedback.

be well.

gita

Gita
First let me say how sorry I am for your sisters news. I took my mother-in-law last thursday and she was given basically the same news, no more treatment recommended, probably last a year! When they take your hope away its so very hard. If your sister is like us she is going through all kinds of emotions right now. I hope you are able to talk to her about what she wants, how she wishes to spend what time is left. It really is the most important thing no matter what any one else thinks or says.
I hope they have a good pain management centre where you are, we do at Princess Margaret in Toronto and I can phone them anytime with a question. You should be very blunt with the doctors and ask what to expect. Of course everyone is different but you need to know what there plans are for handling her pain and what the side effects are going to be. Apparently there are meds that don't make you sleepy all the time, I have yet to research that, its on my to do list. But its important that she gets to spend some quality time with her family. Whatever happens, just make sure its what your sister wants, its sounds like she has had enough and doesnt wish to fight anymore, and if thats her wish then so be it. Just remember how good it is for her to have you there when she most needs you.
Take care

Karen

My mom had tongue cancer surgery 2/03( docs did not recommend radiation), neck cancer surgery 10/03(w/chemo and radiation)Her jugular vein on one side was removed in that surgery. Just last week we found out a new lump on her neck is cancerous and its attached to her carotid artery. Her oncologist recommended radiation but her surgeon( at a different hospital says to do chemo in a "protocol" at Johns Hopkins. Now her radiologist said she wouldn't do radiation cause the carotid artery could start to bleed. We hope to see the hopkins dr. for the study next week but the radiologist did not give me much hope-- she said if the chemo didn't work she may have 2 months left. My mom's still willing to fight this damn thing but , I know there may come a time soon when she'll want to stop. I don't want to think about that, but just want to make sure I let her know I love her and give her happy times as long as she's here. My heart goes out to you-- it's a roller coaster-not a fun one. linda

This is the side of the forum that is hard, it is no good pretending that the only news we are going to get will be good.. for someone like me the knock backs are small, but not everyone will get off so light.. so all of you are in my thoughts.. walk in sunshine when you can..
love and hugs
Helen

I read posts like yours, and it breaks my heart.

My husband had such hope for a cure, and chose to turn away for reasons I'll never understand. Every night I read about the real fighters here, and I feel almost ashamed.

Please know that you are in my prayers.

Mandi

Mandi,

Never feel ashamed for any decisions you or your husband make through your battles with this disease. There is no right or wrong decision to be made and once made, there is no justification required.

I strongly encourage you to sit down with your husband and communicate your feelings about his decision(s). He is still a fighter only on his terms. Understand his reasons so you can have positive thoughts.

Ed