Guest raych77 Posted June 2, 2004 Share Posted June 2, 2004 I'm 27 and my sister is 49. She was diagnosed I think 3 or 4 months ago with LC. Adenocarcinoma to be exact. This is the first place I've found like this. I live in Chicago and she's all the way in Seattle and I am absolutely terrified. She is terminal and the cancer has spread to her Lymph nodes, ribs, and brain. She's currently in a wonderful hospice facility. I can't believe the changes I'm seeing already (we just found about the mets to her brain 2 weeks ago). I have now become the big sister. I have no idea what to expect, what to ask, or what to do. Any help support or advice you could lend would be appreciated. I don't know if I have much to give, but I'll do my best in return. Thanks, Raych Quote Link to comment Share on other sites More sharing options...
karen335 Posted June 2, 2004 Share Posted June 2, 2004 Hi Raych, Have you gotten a second opinion? You don't mention if your sister has had chemo or radiation. I'm assuming it's NSCLC. There are so many people on this site that have mets to the areas that you mention and are doing very well. More information would be helpful. Please let us know so we can try and help you. In my prayers... Look forward to hearing from you soon. Blessings and prayers, Karen Quote Link to comment Share on other sites More sharing options...
Margaret Posted June 2, 2004 Share Posted June 2, 2004 How difficult to have your loved one so many miles away during this time. I'm glad you found this Board and I hope it will help you with this ordeal. Not knowing the details of your sister's diagnosis, I am wondering why no treatment was pursued? I could be misunderstanding...but I think she is in the location (Seattle) of some fine lung cancer facilities. This could have totally been her decision, but I wouldn't come to that decision without at least a second opinion. I'll withhold further comments until we hear more details, but I do offer my prayers and hopes for both of you. Margaret Quote Link to comment Share on other sites More sharing options...
DeanCarl Posted June 3, 2004 Share Posted June 3, 2004 Raych, I'm sorry to hear about your sister, but very glad you found this site. There's a ton of support and info here. What hospice facility is your sister in. My Mom died of lung cancer about 6 years ago and lived in Seattle. The place where she was was incredable. The level of caring and care was just off the scale. My prayers are with your sister and your family as you walk this road. Dean Quote Link to comment Share on other sites More sharing options...
Guest raych77 Posted June 3, 2004 Share Posted June 3, 2004 My sister has received a round and a half (I believe) of Chemo and and she is working on her second round right now, actually I think today was was the last day, of radiation. The first round was for the lungs, this second round was for her brain. The treatments that she is receiving are strictly palliative and will not cure her. Only prolong her life and her comfort level. She was probably sick without knowing it for a couple of years and now the cancer is so far gone they just can't do very much. They are 8 mets (is that the correct term? I'm still new to this) in her head alone. I'm still trying to get all the info straight, and since I can't speak to her doctors I am very frustrated. I talk to her, but the cancer is doing a number on her brain and she just can't focus on the conversation, so I have a lot of holes in my information. Quote Link to comment Share on other sites More sharing options...
JoniRobertWilson Posted June 3, 2004 Share Posted June 3, 2004 Welcome to the group. Hope you found the inspiration and support you need here like I have. They are a wonderful group of people. I wonder if there is something your sister can sign in Seattle that will allow her docs to talk to you. We signed a form like that at my husbands docs to allow me and his sister to discuss his condition with the doctor. Does your sister have family there also? I hope so. I'm no expert but it seems like that's the way it is with this cancer, it's there and spread before you know it and there aren't any symptoms to speak of with some people. Some people here have "stumpled" onto their cancer. As a caregiver to my husband, my heart goes out to you. It must add to the pain, not lessen it, to be so far away and feel helpless. Keep calling her and talking to her as much as you/she can. It has to help both of you. Good luck and God bless Quote Link to comment Share on other sites More sharing options...
tess Posted June 4, 2004 Share Posted June 4, 2004 I would recommend Dr Jack West at Swedish Medical Center in Seattle, He is one of the best and is affiliated with University of Washington. Tess Quote Link to comment Share on other sites More sharing options...
Guest raych77 Posted June 5, 2004 Share Posted June 5, 2004 I appreciate the advice. She is being treated at both Harborview and University of Washington and both facilities have been absolutely wonderful. I have no doubt that she is getting the best care possible (and I am a tough critic) I just want to know what to expect, and noone seems to be able to tell me. Quote Link to comment Share on other sites More sharing options...
paddy Posted June 6, 2004 Share Posted June 6, 2004 Welcome Raych! So very sorry to hear about your sister. It is so difficult being so far away from our loved one's isn't it. My daughters live in MI and MD and we are in CA, so I know what you mean. My oncologist has said that my daughters may phone him if they want to discuss their Dad's case. I wonder if you call to speak to your sister's Oncologist . It is a bit difficult as one more- or- less has to book a phone call before hand, but I am sure it could be managed. Write all your questions down and have them to hand when you call. God Bless, Paddy Quote Link to comment Share on other sites More sharing options...
stand4hope Posted June 6, 2004 Share Posted June 6, 2004 Hi Raych, My husband was diagnosed in early August 2003 and he also had 8 mets in his brain, and one was quite large. It's been 10 months now, and he has had 10 pretty darn good months. Things aren't going too well right now, but that's another story. He also had whole brain radiation, lung radiation, two different rounds with four different chemotherapy drugs, and he also had Novalis (stereotactic radiosurgery) to his brain. Two mets disappeared after the WBR, and two more disappeared after the Novalis. The remaining four shrunk about 30% after the Novalis, and as of this past week, the remaining four tumors are stable. There may be more to your sister's health than we all know and understand at this point, but there is ALWAYS hope. I know you said you are very comfortable with her health care providers, but is there more than one oncologist on this team to make the palliative decision? It also sounds like you are limited in how much information you can find out, but I am going to pray and ask God to help you find out what you need to know. God bless you, Raych, Peggy Quote Link to comment Share on other sites More sharing options...
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