CancerCompass message board discussion started by Sacca on 8/14/2005 http://www.cancercompass.com/message-board/message/all,2736,0.htm Fri, 21 Nov 2008 00:00:00 GMT Fri, 21 Nov 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My mom has atypical carcinoid lung cancer. They gave her 4 rounds of chemo and they are going to start radiation. They could not operate. There is spread to the lymph nodes in the mediastinum. I think some doctors jazz you up just so you continue with treatments. Unfortunaly she has not asked many questions because she doesn't want to know it's stage or her prognosis. It is frustrating to have to guess all the time. Denial is not a good thing. Not for me anyway. My dad died 2 years ago from colon cancer and the doctors said he was doing "just great" He lived 8 mos. Anyone else feel this frustration? Sacca Sun, 14 Aug 2005 00:00:00 GMT I think doctors always put the best possible spin on prognosis because of the importance of maintaining a positive outlook. Generally, they won't volunteer information as some patients (and your mother sounds like one) just don't want to know. And sometimes the doctors truly don't know either - there are so many variables affecting outcome especially as one deals with older patients. Or perhaps your mother does know and has chosen to protect her loved ones from the information. Does your mother's oncologist have a social worker or nurse to provide patient/family support? If so, perhaps that person can help guide you as to how to have a meaningful discussion with your mother about expected outcomes. Perhaps you could meet all together with the doctor to discuss how far and how long you want treatments to continue. Truckin Mon, 15 Aug 2005 00:00:00 GMT Sometimes I feel like we are walking a tightrope in all this. I've heard that cancer patients who are optimistic about outcome do actually do better. So we are supposed to always be upbeat and positive - fighting to the end without giving up hope seems to be much admired. I am 54y/o and was diagnosed with inoperable stage IIIB adenocarcinoma in Oct 2003 - I've had the usual chemo/radiation and have been on Tarceva for two months. There are times lately when I feel quite pessimistic, but don't feel I can share these feelings with anyone - after all I need to be positive - but at what point should you start refusing treatment. A tightrope and I don't know the answer. Sometimes I feel that we as cancer patients have been given an opportunity that those who die suddenly do not have. A gift sometimes I think - a chance to come to terms with the events of our lives as we prepare for the next stage. Let yourself be open to these thoughts from your mother. Then help her eat well, encourage activity, talk about family times, look at old pictures, and write down memories. Maybe you can talk about loved ones who have died and what kind of death she sees for herself. Truckin Mon, 15 Aug 2005 00:00:00 GMT I so wish she would talk about what she sees for herself. It didn't happen with my father and she isn't going to do it for herself either. She make it very clear she was not going to ask about stages or prognosis. I agree that as sad as it is, this time is a very precious gift. My father was told 2 days before he died that he was going to hospice. It was awful because he didn't have a clue that he was that advanced and there was not enough time to even say goodbye. We have an appt with the radiation oncologist tomorrow and I hear he is quite frank as to telling you where your disease is at and what he expects from treatment. She may find out more than she wants to know but it's time. Thanks for the response and much strength to you as you take your journey. Sacca Tue, 16 Aug 2005 00:00:00 GMT I am one of 4 girls. My sisters do not want to address this. It works better for them if they can just go along the way it is and continue their day to day routine. Not that they are not also devestated, it's just that what they don't know doesn't hurt them. I live next door to my mother and I am her main caregiver so I seem to have a greater need to see ahead a little. I guess I need to know what I will be dealing with on a daily basis. Of course it doesn't help that I am a nurse and by nature I need to see the task at hand. Thank you Becky for your kind response. Sacca Tue, 16 Aug 2005 00:00:00 GMT My son's doctor at MD ANDERSON told him that he could not predict his out come, no ones knows, he said only god is the one who holds the answer. Dean in Georgia Fri, 16 Sep 2005 00:00:00 GMT