teetlee

Hello everyone. Just wanted to give an update about my health and situation. I'm scheduled for an octreoscan on Monday morning at 9 am to see if this carcinoid cancer has spread beyond my lungs. I have no idea when I will get the results back. It's kinda funny. I feel like me and my doctor are reading the same internet sites about this cancer and the tests. I don't think he has treated this kind before. I plan to ask him at our next visit. Several weeks ago my dr. had said that rfa (radio frequency ablation) would be a viable option for me. Now he says that if the cancer has spread and I have multiple sites ...I wouldn't be a candidate for the rfa. I really feel just like I'm starting over from the beginning again. New dx, new tests, new anxieties to fret over. And so it goes. Teet

Dear Zimbo, It sure sounds like you and mom have gone through a lot. I encourage you to continue to do research and question doctors and their opinions. Don't let the doctors assume anything. Especially that the cancer is nsclc because it is slow growing. My doctor "assumed" I had nsclc because it was slow growing and some other reasons. That was over 2 years ago. I just found out that I've had carcinoid lung cancer all along. It is a very slow growing cancer but it doesn't respond to chemo or radiation. Please,please before you start any treatment...rule out carcinoid cancer. It is a very rare cancer and doctors don't think about it that much. I'm living proof of that. Keep remembering to ask all the questions you have, do research, don't stop and don't let the doctors intimidate you. Best of luck to you and your mom. Teet

Thank God for people like y'all who don't have a problem reminding doctors that they are not God and they need to get off their pedastels. My first onc. was a grandfather type. When I would ask questions he would pat me on the head and say you don't need to know that. Well, I guess I finally grew up and had enough when he made me wait 10 days for my pet scan results. He actually tried to blame his receptionist. I found a new onc. who does answer my questions and much more. Really regret I didn't do it sooner. Teet

Hello all, I had posted this in another forum but Dave suggested I post it here. In Dec. 2000 I was dx with nsclc and given chemo. It didn't work. At the end of 6 months my body couldn't take any more and the chemo stopped. All this time the cancer had never changed by so much as an inch either way. In Oct. 2001 I went to MD Anderson for a second opinion. They said I had 3B nsclc and only thing was the iressa trial. So I tried it and almost died from it. Over 2 years later my cancer still has not changed. But the effects of the chemo and iressa have left me with diabetes and a debilitating arthritis that is very painful. In the meantime I changed oncologists. He basically said he had never seen nsclc act this way. We started talking about doing radio frequency ablation but first he wanted a pet scan and to check with MD Anderson about my pathology test because my records never showed they did one. He couldn't find any results anywhere. I posted a little of this a few days ago and John responded and said to look up carcinoid. I did a research and was convinced that's what I had. I called my dr. on Mon morning and he called MD. He found out that in Oct. 2001 they had changed my dx. to atypical carcinoid. Only they never told anyone and never put it in my records. I would have not qualified for the iressa trial since I didn't have nsclc. I so clearly remember the dr. at MD standing there with hands on hips saying I've seen enough, you have cancer in the lungs and liver and I don't need to read any more reports or do any more tests. The only thing left for you is this clinical trial. There was a 5 week time span between the new dx. and the start of iressa. If I had known I would not have taken the iressa. I have since found out that the pathologist in my home town basically didn't get a clear dx. They stopped when it "looked" like nsclc. If their egos would have let them send it on to a larger institution, I would have never taken chemo. I am so angry and disappointed and I don't know where to turn to or how to or what to do. I've been in so much physical pain lately that it's been hard to focus on this new development. I've had to start all over again with new tests and on Feb. 24 I start an octreoscan. It doesn't sound hard it just takes 4 days to complete. And maybe that's okay for many ....but for me it will take alot of time and energy on my part to get out and do this. I just can't get past the part where my dx was changed only nobody was told. I don't know how that works. Do the path. tell the dr. face to face, is it written down, just how is information passed from one dr. to another. I've always had a low threshold of trust for the medical profession. This does it for me. What I now know is YOU are the only one who can take care of you. I feel like for the medical profession its really all about money and we are just another number. Thankfully there is a place like this to visist and ask questions or just blow off steam. I keep asking myself...if I had only starting questioning sooner. Teet

Thanks for the encouragement Tiny and John. Dave contacted me and suggested I move my post to another forum because this one isn't visited much. So I will repost this in late stage nsclc. Teet

I wasn't sure where to post this. But last week I found out that I never had nsclc all along I atypical carcinoid lung cancer. I was first dx in Dec. 2000 and the path. said it "looked" like nsclc. So they went with that and started pumping me full of the strongest chemo I could take. Since I had shown no symptoms and was a relativly healthy person. Six months later chemo had taken its toll on my body and I could have any more chemo. the cancer naver changed. Some of you know my history. I went for a second opinion at M D Anderson in Oct.2001. The onc. there said no hope for me and should try iressa. I almost died from the iressa. Now here we are Feb. 2003 and my new onc. just found out that MD Anderson had dx me in Oct. 2001 with atypical carcinoid. This information was never told to doctors and never filed in my records. I wasn't until my onc. called MD and asked if they had done one or would do another that he found out about the change. Thankfully I finally posted a message on this board about my cancer and how odd it was acting that I got a clue from John about the carcinoid. I researched it myself and knew that's what I had. I called my dr. and left a message. Them he called MD and so it goes. I am so angry I could scream. This type of cancer doesn't respond to chemo and I should have never had the iressa. If the first pathologist had just done 2 more stains he would have gotten the correct dx. Today I have diabetes and a debilitating arthritis due to these treatments that I should have never had. I already had a low trust level for the medical profession this just confirms it for me. I basically don't trust them at all. If I hadn't started making noise about doing something about my quality of life because of the arthritis I think I would still be in the dark about my condition. There was a 5 week period between the second dx and the start of the iressa. Why wan't the onc. at MD told, whay wan't I told or my dr. back home. There was enough time to stop the iressa, to not even start it. I think the saddest part is that I never have suffered any symptoms from the cancer, it's all been from the treatment. All this confirms my suspicions...it's all about money and to the drs. we are just a number. guess I should go change my signature information! Teet

thanks for the encouragement, Debaroo. I will keep you posted. John, thank you for the information. As a matter of fact my onc. is sending my biopsy slides to M. D. Anderson for a pathology report. The doctor who did the rfa on my friend is from New Orleans, so maybe this is the same person. Thanks again,

I tried to post this topic but I lost it somehow. I'm a low-tech person and my computer always gets the "best " of me. Anyway...I saw my onc. yesterday. My x-rays showed no change. Yeah! As a matter of fact they have always showed no change since my dx in Dec. 2000. My dr. is really baffled by this. Says he has never seen this in all his years of experience. What I have is not acting like LC. I was dx. last Apr. with paraneoplastic rheumatic syndrome...big words for arthritis. My rhematologist says it was caused by either the LC or the chemo. Seems the only way to get rid of it or to make it easier to treat, is to get rid of the cancer. I'm stage 3b and inoperable. So I asked about radio frequency ablation. I have a friend (one of his patients) who had this done on her liver last year and it worked. I've been doing a lot of research on RFA. It's less invasive than surgery. My dr. thinks this is a "real" option for me Surprise! Surprise! He wants to do a Pet Scan first to see if the cancer is still active. The last one I had was Aug. 2001. I'm almost afraid to think of what this could mean. So has anybody here had RFA or heard about it? Has anyone heard or know of someone whose cancer just stayed the same for years? I sure would appreciate any feedback. so glad I found this site.

I learned from the facilitator of my support group that November is Lung Cancer Awareness Month. There is a gold ribbon outlining clear space that stands for the invisibility of this disease. It's hard to diagnose because there are no early detection tests and once you do have symptoms, the disease is usually advanced. I'm a non-smoker and lost both my parents to SCLC. They were smokers. The dr. said genetics played a part. If so, I want early detection tests for my children.

Hello, I'm new to this board. I received an intresting letter this weekend and thought some of you here would find it interesting also. The FDA has informed AstraZeneca that they will be taking up to an additional 90 days, until May 5, 2003, to review the new drug application for Iressa as a treatment for advanced NSCLC after disease progression following chemo. It would still be available on a compassionate use basis. I took Iressa in a clinical trial and didn't have good results. I know some have had improvement or stability of their disease. So it does help some.