Determined in San Fran Posted July 27, 2003 Share Posted July 27, 2003 Is it common for docs to tell someone these is no hope and nothing one can do after first diagnosis? Mother, 62, n-sclc spread to brain and chest bone. Her only present health problems are in order severety. The docs robbing her of her most powerful weapon (her mind) by telling her she has 6-9 months at best w/ no hope and nothing can be done but full brain radiation, and dizzyness and nausia from brain tumor that seems to be subsiding. She doesn't even have the mental will to get a second opinion. we are all very realistic but also very optomistic . Quote Link to comment Share on other sites More sharing options...
AdaW Posted July 27, 2003 Share Posted July 27, 2003 I am very sorry that your Mother has NSCLC and very sorry that you have run into an oncologist that has given her no hope. I would suggest finding another doctor to help your Mother. You labeled your post "tough questions." I need to ask you something that I have wanted to ask others who have been very blunt on the board. Do you really think it's appropriate to post a question about how painful it is to die from something that many people on this board have? It isn't. When I was first diagnosed 2 years ago, I turned to books. There are wonderful resources out there that can give you a blow by blow description of end of life issues. That's where I would turn to answer your type of question. You aren't the first person to ask insensitive questions on this board and I don't want to embarrass you or anyone else. I have empathy for you. I know it's hard for both patients and caregivers to go through this, but I have to put your question on my list of "what not to say to someone who has lung cancer." along with: Did you smoke? What is your prognosis? Do you have a cemetary plot? Ada Quote Link to comment Share on other sites More sharing options...
Determined in San Fran Posted July 27, 2003 Author Share Posted July 27, 2003 I am speechless and very sorry for seeming incensitive. I truly apologize to anyone I may have hurt or insulted,by asking such a question. I will look elsewhere for answers to such questions Quote Link to comment Share on other sites More sharing options...
JonathanS Posted July 27, 2003 Share Posted July 27, 2003 Hi, First off, I would like to say that I don't feel your post was offensive. The way that I read it, your question was asking whether or not it is common, or "correct" to tell someone with NSCLC, who has been initially diagnosed, with spread of the disease to the chest bone and brain, that there is no hope or nothing they can do. Is that correct? I am not trying to offend anyone on these boards, or chooe sides, but that is what I got out of the posting. If I am wrong, I stand corrected.... Anyway, assuming that was your question and inqury, my answer is no, that it is not common, or ethical to present any illness like that. There are many people on this very section of the boards, that have had extensive spread of their disease at the time of diagnosis, and have lived a qualiuty life for much longer than "6-9 months" or what their first oncologists had told them. There have even been some that have achieved long term remissions and cures! My opinion, after researching this disease for going on four years, is that it is wrong to tell anyone what your mom's oncologist has told her. Why? Because there are things that can be done and aggressive treatment offers people with all stages a chance, hope, and shot at getting well. The key is to have an oncologist who is willig to give it a shot, and not just do what is necessary until the patient dies- (to put it coldly). I am not telling you to go out there and find an oncolgist who is going to say that she can or will get well, but at least one that will give it a shot. - one that realizes she CAN be treated, and does not have to die in (as you put it) "6-9" months. The oncologist your mom has now seems to believe otherwise, about her getting well, or her capability of getting well, and BEWARE of these suckers, because they wil treat you that way. And come on here, let's be realistic, even if your mom was dying, and there was no hope at all, --couldn't the jerk be a little more sensitive in the way he puts things?? No offense, but that is not the kind of doctor anyone would trust or want in there time of need. Find another oncologist that will understand your mom's wishes of wanting to get well, and is willing to "give it a shot", and treat her aggressively. One that is not at least mentioning death every time she come through the damn door! Nobody can put a time limit on anyone's life! Go get em'! Do not let your mom near that jerk again either!! Print out these responses and show them to he so she knows she's got a fighting chance...be her advocate!! Jonathan Quote Link to comment Share on other sites More sharing options...
AdaW Posted July 27, 2003 Share Posted July 27, 2003 Someone deleted the offensive question from the original post, so now the post reads like a new post and not the one I was commenting on. Ada Quote Link to comment Share on other sites More sharing options...
tmaizeinlv Posted July 28, 2003 Share Posted July 28, 2003 I came in after the offensive part, so I am totally neutral here. But I will tell you that the doctor/oncologist said there was no hope for my mother when she was first diagnosed. He told us six to twelve months, potentially one month, potentially 18 months. He said they would try to make her comfortable, but no hope of remission, "cure", or even management. Well... guess what? I think he may be wrong. She has NSCLC with mets to brain and lymph. At first, they said 2 brain tumors, now they say one might not be cancer. At first, they said cancer in hip; now they say not. At first, they said cancer to adrenal gland, now they say it is probably a cyst on her kidney. And the tennis ball sized tumor under her arm is now "unfeelable" after 2 rounds of chemo. The nurse told me Friday that they are aiming for management and control. In the "good news" part of this web site, a woman wrote in with much the same story about her mom and her mom is now in remission. My mother is also suffering from depression and won't get a second opinion. See if you can get her to sign a letter saying you have access to her records, then start researching. Sloan Kettering and MD Anderson both will do a records review without the patient being present. She may be eligible for one of their clinical trials; don't know for sure (obviously) but maybe worth a shot. Most of the larger hospitals also have oncology counselors and social workers who can help survivors deal with emotional aspects (my mother agreed to ask for one tomorrow, and I sure hope it helps her outlook). Anyway, I would not take gloom and doom for an answer. There are MANY survivors who were "written off" by their doctors and who are still alive (with good lives) years later. Best of luck. Quote Link to comment Share on other sites More sharing options...
norme Posted July 28, 2003 Share Posted July 28, 2003 Hi Everyone, This is a very tough call regarding the orig post. I know where she is coming from because she was so stressed out and never being through this before, really wanted some insight. she never for once gave it a thought that we are both caregiver survivors and cancer survivors...as a caregiver survivor, i could have talked to her about the subject but as a cancer survivor i would have been in Ada's shoes. I would not have wanted to have read it so i passed up the subject. Yesterday, something similar almost got to me. there was something really bothering me but i didn't want to put it on here but am still being bothered by it today but will again hold it in. it was an article in the Sunday Cincinnati Enquire. My husband read it to my dismay because i was hoping he wouln't see it. I sure would have loved to have talked to someone about it.. what to do about this i don't know. we can't pretend all our loved ones and ourselves are going to make it through this but that is not realistic. We can hope, but in back of our minds, we have thoughts and sometimes need to express them to someone else and that is hard to do on this board so we don't do it....is that right or wrong. I sure don't have that answer........maybe there could be a section for the rough questions that some need not read. I don't know.......all i know is yesterday's article really stressed me out......and no one to talk to....could that be printed in the family members/caregiver's section with some type of caution to not read, may be to harsh. or just not speak of what sometimes goes through all of our minds.....this is a question for the founders and all other 400 plus members.....God Bless Quote Link to comment Share on other sites More sharing options...
tmaizeinlv Posted July 30, 2003 Share Posted July 30, 2003 I'm new to all this, so if everybody already knows, this...please forgive me. I just happened to stumble on this today. The American Cancer Society has a 24/7 phone line for ANY question, no matter how offensive, brutal, etc., you can ask. They provide psychological insight, emotional support, and answers to technical questions. If the person on the phone doesn't know the answer, they can have their research oncologists find it for you and they'll call you back. I've used it (just today) and it was fantastic. 1-800-ACS-2345. My mother's oncologist is discouraging her from a second opinion and basically telling my dad that if they go get another opinion, he'll stop treating my mother. Her radiologist is super, but I am learning to thoroughly dislike her oncologist. He is a large part of the reason that my mother has given up hope, despite the fact that her tumors are shrinking and the treatments seem to be working. Cat scan on August 8...hoping and praying. Quote Link to comment Share on other sites More sharing options...
AdaW Posted July 30, 2003 Share Posted July 30, 2003 Dear Determined, I have been bothered by my response to you since I wrote it. I would like to apologize for brushing you and your question aside because I know it's hard to get up the courage to ask certain questions and I have now probably put you off so much that you will never visit again. One of the big fears that I have is pain and when you asked your question about pain, I had just been in the middle of the most pain I have experienced since being diagnosed 2 years ago. My pain is very difficult to manage right now and it is causing some tears. I read your question at my most vulnerable. I apologize for lashing out at you when I should have offered some really good advice, like some others have. The note about crossingthecreek.com (?) was really worthwhile and other posts in this thread are helpful. Sorry for lashing out. That's not really like me. Hopefully, you'll post again. Sincerely, Ada Quote Link to comment Share on other sites More sharing options...
Determined in San Fran Posted July 30, 2003 Author Share Posted July 30, 2003 Ada, Thank you for your kind apology, it is welcomed but not needed. I have learned something from every person that has responded to my questions on this boared, including you. As you noticed I deleted that question as soon as i received your reply, and as i read it again i realized i very well could have ask the same question with more compassion. I am much more careful now when talking to someone about this, so it was a good lesson for me . I also think you were very polite in your lashing out...so i guess your a very polite lasherouterer (I hope a little humor is ok tonight) Thanks again Ada your friend, Mike Rosen Quote Link to comment Share on other sites More sharing options...
Karma1976 Posted July 30, 2003 Share Posted July 30, 2003 That is why i love this board cause there is healthy debate sometimes and no right or wrong! well deterermined (again NOT sure what the original question was) BUT if you have some end of life questions you want to ask, you are more then welcome to PM me? Not sure I can offer too much in site BUT i can try to help. Quote Link to comment Share on other sites More sharing options...
Karma1976 Posted July 30, 2003 Share Posted July 30, 2003 Oh and Norme...sorry you had that article on your mind all day!! feel free to vent if you want. Quote Link to comment Share on other sites More sharing options...
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