silvermyst Posted February 7, 2005 Share Posted February 7, 2005 Hello, I am a newcomer. I have been coming to this site since January of this year to read everybody's messages. It helps me to better understand lung cancer. My husband has adenocarcinoma, stage 111B. We found out in December and had surgery to remove what we thought was only one large mass. It turned out there were many masses, so the doctor removed the large mass and two other ones and left the rest. I didn't understand why the doctor didn't remove the lung. The Oncologist gave me a reason why, I just don't want to except it. I am scared and afraid. My husband is a 28 year old non-smoker. My husband opted against chemo but is taking Tarceva. He has the most awful looking acne like rash. He says it doesn't bother him, it just looks bad. Has any one ever heard of the cancer not showing up on cat and pet scans? Even though we know the cancer is spreading in his lung, the doctors can not see any tumors/masses on the scans. We know it is cancer because the two other masses the doctor removed (ones we did not see) along with the original mass that we saw all came back as cancer from the pathology report. The oncologist is at a lost because it is hard for her to help when she can't see what is goning on. Quote Link to comment Share on other sites More sharing options...
SDianneB Posted February 7, 2005 Share Posted February 7, 2005 28 years old. Damn this disease. Welcome to the forum -- you'll find wonderful people here who can help you both through this. It's scary as it can be, and also uplifting to hear from others who go through the same things. My cancer is different, and doesn't typically involve surgery, so I can't address that, but just wanted to say hello and welcome, and give you my best wishes. Di Quote Link to comment Share on other sites More sharing options...
lilgna Posted February 7, 2005 Share Posted February 7, 2005 WELCOME. let me be the first to welcome you. I do so wish no one had to come to a lung cancer site. But, this is a wonderful place to get support and knowledge, (which is power), peace of mind and friendship. I am so very sorry someone you love has lung cancer.. someone so young. I also have adenocarcinoma stage 3b, inoperable, I took Carboplatin and Taxol chemotherapy along with 7 weeks, radiation treatments. That was completed in Sept. 03, I also have been in a clinical trial. through the NIH, in Washington DC, and I have remained stable. Tarceva is evidently a good drug. The rash I understand is quite common, although others can speak to that better. Alot of us, survive well past given times, so please do not despair, look through other posts, and you will see HOPE, I will keep you in my prayers and thoughts. Things will get better...... Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted February 7, 2005 Share Posted February 7, 2005 Welcome to our support family.There are lots of knowing and caring people here.The above posts are true,this is an awful disease to have.As you read posts tho you will notice that there are a lot of survivors here from all different stages and types.No matter what comes along for both of you there is usually someone here that has been there and can offer advice and support. Quote Link to comment Share on other sites More sharing options...
mhutch1366 Posted February 7, 2005 Share Posted February 7, 2005 Hello, and welcome to the family .... I am sorry you are dealing with this blasted disease. It is not unheard of for some cancers to be invisible to PET. I think Norme's hubby had a hard to scan cancer. There may be some information in the archives about that, if someone with skills greater than mine can find it. Tarceva may be a very good drug, it is still very new. This place is filled with warm and caring people who will be supportive of you in your battle with this beast. Also a great place for learning more about the foe. Keep us posted, please, and let us help you. XOXOXOXOX Prayers, always, MaryAnn Quote Link to comment Share on other sites More sharing options...
cindi o'h Posted February 7, 2005 Share Posted February 7, 2005 I just want to add my welcome. I am a stage lllb too. But, I didn't have the surgery as we already knew that my cancer was too advanced for the surgery. All of my cancer showed up on the PET and CT ....(I guess?) and so I had radiation and chemo combo. The drugs were pretty powerful...taxol and carboplatin. And tons of radiation. You know, it never hurts to get a second opinion... I am reading that your husband is a young man and probably healthy, right? I was an old girl and when the treatment plan of poisons was presented to me, I went for it. With this disease, for survival, you do want aggressive treatment.. No kid gloves please. I wish that you will get a second opinion. I don't know that much about Tarceva, but I think that it is used further down the line.. if I am wrong on this, won't someone here correct me? Best of luck to you and to your husband. Are you in the U.S.? Cindi o'h Quote Link to comment Share on other sites More sharing options...
Don Wood Posted February 7, 2005 Share Posted February 7, 2005 Hi, Newbie, and welcome. If your husband is Stage IIIB, that means there is evidence the cancer is outside the lung and that may be the reason for not removing the lung. Surgeons usually do not remove lungs unless they can get all of the cancer by doing so. Chemo and radiation are normally used to shrink the remaining tumors. My wife is also a non-smoker who got lung cancer. She is Stage IV and is still handing in there 28 months from diagnosis. Don Quote Link to comment Share on other sites More sharing options...
kimmek Posted February 7, 2005 Share Posted February 7, 2005 Hi and Welcome Please run another dr for another opinion. I have never heard of not doing chemo and or radiation for the stage of cancer your husband has. I understand that he elected this, but im sure his dr must have told him that they really dont know that much about tarceva yet, especially as a first line treatment. As Cyndi said this needs to be hit with the "big guns" for the best chance of survival. Please do some more research with your husband about this, I am sorry, but I cant help but think for a young 28 yr old this is not a good choice for him. If you or he has any questions please fell free to ask, also please utilize out "ask the experts" section with thier opinion about your hubby's current treatment and anything else. Someone here can always help. God Bless you Kim Quote Link to comment Share on other sites More sharing options...
Ry Posted February 7, 2005 Share Posted February 7, 2005 Welcome to the wives club. My husband is also at the same stage and he has just started the Tarceva. Prior to that he was on Iressa. He did not have surgery as the tumor is on his vena cava and they cannot get a clean field. I hope you will take the above advice about getting a second opinion. It was one of the best things we did. Your husband is young and you should seek out all options and be aggressive. Good luck! Rochelle Quote Link to comment Share on other sites More sharing options...
Justakid Posted February 7, 2005 Share Posted February 7, 2005 Hi and welcome - I am currently taking Tarceva and have that horrible rash, although mine hurts, skin feels very raw. I also take antibiotics with the Tarceva to try to get the rash under control. I agree a second opinion never hurts, I didn't get mine until after treatment. Your husband is young! My doctors kept telling me that they were going to nail me because I was young and healthy....boy did they. BUT so far so good! Quote Link to comment Share on other sites More sharing options...
Elaine Posted February 7, 2005 Share Posted February 7, 2005 I am sad to have to welcome you to this site because I know that you would rather not have to be here anymore than any of us do. We have an "Ask the Experts" forum on this board--just click on the black rectangle near the middle top of the screen and it will take you there. Pls ask your questions there about the CAT Scans not showing the cancer. They will surely give you an answer that might be helpful. I wish you both the best. elaine Quote Link to comment Share on other sites More sharing options...
stand4hope Posted February 8, 2005 Share Posted February 8, 2005 Hi Silver and WELCOME! About all I can do is ditto what everyone else has said, especially about how young your husband is. My My!! My husband's cancer was inoperable, so we don't have any surgery experience. My first thought that nothing showed on the scans, especially the PET, is that they got it all. On one of the PET scan websites I visited, it said cancer can't hide from a PET scan. I know there can be false positives, but I think they are pretty accurate for picking up cancer if the cancer is there, so maybe that is very good news. Still, like the others have said, I think some type of chemo and/or radiation is usually recommended at that stage to kill off any minuscule cells that may have slipped away from the original tumor, so maybe a second opinion would be a very good idea. Keep us posted, Silver. You have come to the right place for support and questions. We are always here for you! Love and God Bless, Peggy Quote Link to comment Share on other sites More sharing options...
silvermyst Posted February 8, 2005 Author Share Posted February 8, 2005 Thank you eveyone!!! I will talk to my husband about a second opinion. I am thinking about having him go to the to The City of Hope. A second opinion will probably help us out a lot, especially since his Oncologist seems puzzled to me. Thanks again, everyones feedback makes me feel like we are not alone. Quote Link to comment Share on other sites More sharing options...
shineladysue Posted February 8, 2005 Share Posted February 8, 2005 I just want to add my welcome to the group. I can't relate to your situation except to echo everyone here and I think everyone is entitled to have a doctor they have confidence in. A second opinion can't hurt and in many cases has made a huge difference. Know that we are here for you. Let us know how things go. God Bless , sue Quote Link to comment Share on other sites More sharing options...
Maryanne Posted February 8, 2005 Share Posted February 8, 2005 Hi there, Why don't you fill in your profile, which will show up at the bottom of your posts. I don't even know what to call you. If you can put down what city and state you are in, there may be people on here who might have some suggestions for a Doctor in your area for a 2nd opinion. Just know that we are always here for you. take care Maryanne Quote Link to comment Share on other sites More sharing options...
4Teresa Posted February 11, 2005 Share Posted February 11, 2005 I am so sorry you have to go through this. Please seek another opinion for peace of mind. Go to some of the lung cancer sites online. I hope you can find the answers you need. God Bless. Teresa Quote Link to comment Share on other sites More sharing options...
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