lullabelle21302 Posted July 31, 2007 Share Posted July 31, 2007 Hello, I hope everyone is doing well. Mom went to her onc today and she was saying that we knew from the beginning that this was incurable. She told us of the side effects of cpt-11 and wanted to know if mom wanted to continue with treatment, she also asked my brother and I if we wanted her to continue doing treatment. She said she could buy her some time. The thing that is bothering me is that I talked to one of mom's nurses and she told me that her docs were talking about mom and how well she was doing and they couldnt believe it and had never seen a patient like mom respond so well and recover so quickly. So why dont the docs tell us that. I didnt want to question it because I was afraid I would get the nurse in trouble and she has been so upfront and honest with me I just didnt want to risk it. Mom starts her treatment on the 10th of august. I told my brother that maybe her onc doesnt know what to say cause mom is doing extremely well and mom says she has to be honest with us, well that may be true but I feel like they are just expecting her to go down hill and it bothered me that she asked if mom wanted to continue treatment. It was like well we can do it but there still isnt a cure. Yes we know there is no cure but this website and the people on here are living proof that there are survivors from ext. sclc, some had mets worse than others and they are still alive. Thanks for reading, I just needed to vent because I truly dont understand why some docs are the way they are. As always I am praying for each of you, as well as your family Rhonda Quote Link to comment Share on other sites More sharing options...
ernrol Posted August 1, 2007 Share Posted August 1, 2007 Rhonda, I was told that there is no cure, but that doesn’t mean that you can’t live a long time with it. There may be no cure today, but if you can live a few years with it there may be a cure then. Sometimes doctors don’t tell you the best news because they don’t want to get your hopes up. They think these are false hopes. There is no such thing as false hope. I would say it’s time to get your team together and plan on your mom living with this till there is a cure. That’s what I plan on doing. Stay positive, Ernie Quote Link to comment Share on other sites More sharing options...
wendyr Posted August 1, 2007 Share Posted August 1, 2007 Hi Rhonda: Maurice was asked the same question and basically given 3 options, see profile 12/06. He has nsclc but it rattled me just the same. We just told her we are pro-active so she fought like hell to get him in the trial. wendyr Quote Link to comment Share on other sites More sharing options...
lc46 Posted August 1, 2007 Share Posted August 1, 2007 Hi-same thing here-My Mom has Ext Small Cell-responded extremely well-they even did radiation twice a day-which is usually only given to limited-then she got her brain radiation because of the met-my Mom is still here 10 months since DX- My Mom started CPT 11 today for a 1.5 cm met in her liver that is back. Everytime we go to her oncologist I remind my Mom not to listen to her if she starts to become negative!!! I don't want to hear it-my Mom walked out of her office 10 months ago and fell into a major depression because this oncologist more or less said she NEVER saw any survivors of Ext Small cell-and I said Well I have!!! I told my Mom this Dr is dealing with maybe 1% if that of small cell - she doesn't know everything!! You just tell your Mom to keep on fighting !!! Dar Quote Link to comment Share on other sites More sharing options...
teriw Posted August 1, 2007 Share Posted August 1, 2007 If your mom is doing well, then focus on today, what you can do to make her better, and maintain your hope. There are so many people here who have beat the odds and have gone against the negative predictions of their doctors. If she's doing well, keep the hope alive for her and for your family. Quote Link to comment Share on other sites More sharing options...
Larry Posted August 1, 2007 Share Posted August 1, 2007 It is to bad that some doctor's can be to blunt.My Wife's Onocologist was very good at communication's and he never came right out and told her it was uncurable but alway's told her that they would fight this battle together and he would take care of her.And all the Nurses were very professional in not giving false hope or negative outlook's.But Doctor's and Nurses are Human and some believe in laying it out on the line where other's can not for what ever there reason. So it look's to me like you have a no nonsense tell it the way he see's it Doctor and a Nurse who does not have the heart to be factual. Quote Link to comment Share on other sites More sharing options...
ztweb Posted August 1, 2007 Share Posted August 1, 2007 Rhonda, It is a bummer that she doesn't give you the upside too. Please know you have my prayers. Let us know what you decide and of course you will have my support no matter what. Blessings, Jen Quote Link to comment Share on other sites More sharing options...
dchurchi Posted August 1, 2007 Share Posted August 1, 2007 Rhonda, There are many things I love about Alan's Drs, but the most important issue was not one of them ever told Alan his disease was incurable. Now the never said it was curable either, but what is not said can be just as important as what is said. As you can read in Alan's profile he has a few major set backs, but 2.5 years after DX he is enjoying a pretty good life. If necessary find another Dr. Best wishes to your family. Quote Link to comment Share on other sites More sharing options...
Cindy RN Posted August 3, 2007 Share Posted August 3, 2007 If your mom is doing well then GO FOR IT!!!!!!! So many of us were told "you are terminal" well we ALL are ----- someday. I was diag ext sclc Feb of 2001, it came back in 2003 but I am still here and doing fairly well. Please keep her encouraged and ask the Dr to be more optimistic! Cindy Quote Link to comment Share on other sites More sharing options...
Bev'sSister Posted August 3, 2007 Share Posted August 3, 2007 I say get another Dr.. If your Dr. doesn't give it a chance, then she is not going to do everything she can. My sister's Dr. is to the point also..but in a positive way..He told her that the odds were against her, but that he is going to help her beat the odds and so far..she has. She has her ups and downs, but her attitude has been positive and I think that is very important. Her faith has helped a lot also. No two people are alike and Dr.'s don't know everything! Love to you and your Mom, Bobby Quote Link to comment Share on other sites More sharing options...
Nova Posted August 7, 2007 Share Posted August 7, 2007 Hi Rhonda, If your mom's doctor is being that negative, then maybe you could find another, for a second opinion..? If not, then I would print out "Cindy RN"'s profile- (if she doesn't mind), and take it to show the doctor. That should hush them up.... Harry and I want to know the "facts", but as far as "predictions" go, we just think the doctors are making educated guesses, which we can do ourselves! All life revolves around "hope". (in my opinion). If not pertaining to our health, then our jobs, our children's futures... everything! Don't let anyone take that away from you. Take care, Nova Quote Link to comment Share on other sites More sharing options...
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