nancyf267

I have been told by several doctors that you only get SCLC from smoking. I was 38 when diagnosed, went through radiation, chemo, then PCI...less than a year later another biopsy was taken and I was told SCLC was back and they sent me to a doctor in a bigger city to talk about 2nd line chemo and trials...long story short, he order his own biopsy and it was determined to be Carcinoid Tumor - which does not respond to chemo or rad. GET A SECOND PATHOLOGIST TO LOOK AT THE SLIDES! 29 and a non smoker doesn't make any sense...I was told that these cancers are in the same "tibe" but a different "family" and are "notoriously" hard to read. I was so very lucky in my situation....and have found several others that have the same story to tell.....I wish I would have pushed the doctor more each time he said "you are so young...my youngest patient ever with SCLC...I just can't believe it."

Hi everyone...I survived my surgery and have lots to tell all of you but I think it will have to wait a few days. I just got home and as you all know, I'm really sore and weak. I just have to tell Connie that I couldn't imagine heading into surgery with a happy go lucky attitude like she suggested, but I did! My hubby and kids told me I was so goofy I was pulling on my lips, stretching them out and saying "I can't kiss you because I can't feel my lips, but I love you all!" It was nothing like I was fearing it would be! Talk to you all soon. Thanks again for your prayers and thoughts.

Bless you all and thanks for you thoughts, prayers, and words of wisdom! We're taking off in an hour or so to stay near the hospital tonight. Talk to ya all in a week or two....

Thank all of you so much! I can't help but tear up when I read your posts, all of you are so kind! I haven't slept much in the past couple of days, I keep praying that I reach a level of peace soon. My surgery is scheduled for 2/2/07 at 11am. It's going to be at a hospital about 120 miles from home, so that really stinks. Hope the waiting room is a big one, thank God for all the family and friends that will be there for me!!! Thanks again for your support and prayers!

So...I'm having surgery in a week and I'm a mess! My doctor says he will try and only take the upper right lobe and part of my wind pipe. He said it's going to be especially tough because of all the radiation scar tissue and if there is a lot of bleeding, he may have to take the entire lung. He is going in through my chest, like having open heart surgery. I don't know what to expect and I'm so so so scared! Any advice from you tough ones that have had surgery?? Help!

Welcome Cindy...I told you these folks were awesome!

They say it never did go away, it was assumed to be scar tissue after the treatment.

14 1/2 months ago I was dx with limited SCLC (biopsy taken from broncoscopy). I went through chemo, radiation, and PCI. October of this year, I was coughing up a little blood, so in I go for another biopsy. I was trying to avoid the results, but ran into my doctor while visiting someone in ICU at the local hospital. He told me the news...it came back SCLC...says it looks just like it did a year ago, how can that be after all the chemo and rad. After all the scans, it's still limited. He then sends me up to Portland to see this doctor that is suppose to be the very best in the Northwest. My husband and I were very impressed. He asked that I go in for another biopsy so that he could have his specialist look at it, she only deals with chest cancer. I go in for the biopsy (I think he tried to remove my lung, it was terrible). I got a call on Thursday from the Portland doctor...."Mrs. Forte', Merry Christmas, you do not have SCLC, you have a carcinoid tumor ~ you were misdiagnosed last year!" You can imagine how that phone call changed my life! I have to have it removed (my right upper lobe and part of my windpipe)which he said is going to be very difficult because it's in my large bronchi and I have had so much radiation there...causing a lot of scar tissue. The survival rate for this type of cancer is remarkable! Without a doubt, I have been blessed. I almost feel guilty posting this, but I'm trying to make the point that doctors and labs are sometimes wrong. I can't complain because the news is so good, but all of my treatment was for nothing ~ a carcinoid tumor doesn't respond to rad or chemo! I should have had this removed in Nov of last year. I could have saved thousands and thousands from co-pays and deductables, and my body did not have to endure the nasty treatment...I keep thinking they fried my brain for nothing! We won't even mention the middle of the night panic attacks..you know what I'm talking about..my oh my, what goes through our heads! I will no longer accept a dx from any one lab in the future, I will demand two labs be involved...I allowed the medical community to have way too much control! I continue to pray for each and every one of you and your family!

Haven't posted in quite some time, but I come here and read EVERY day, I just feel that I can be of no help to anyone at this point. But...I really need some input from all of you ol' timers You can read my story below, but there's more. Nearly a year after my initial dx I started coughing up some blood so the doctor sent me for another bronchoscopy to "take a peak" and biopsy anything that looks weird. Well, they took a biopsy of a tumor that "looked exactly like it did a year ago" as the doc put it. He said that if he didn't know any better, he would swear I didn't have any treatment. After all the scans, they determined that it was still limited stage...which he has never seen before. A year later and still localized to the upper right bronchi. My doctor sends me to a surgeon up in Portland and he turns out to be the smartest guy I have ever met, and real nice too He wants to take my case to his board of specialists and see what everyone comes up with as far as the best treatment. He requests that my original slides from the biopsy be sent up to his office so that his pathologist, who studies only chest cancers, could see them. He called a week later and said that there is a chance that it's not small cell, but rather a carcinoid tumor (he said they are in the same "tribe" but different "families." I am going in tomorrow for another biopsy that will be shipped up to this specialist in Portland for diagnosis. It could go either way at this point. Wow...what a roller coaster ride! Anyone ever heard of this before? I know I certainly have not, and I'm so confused.

Hi everyone...has anyone heard from Darrell? Did I miss something? I'm a bit worried!

These kind of posts are what keep me going from day to day Thank you sooooo much for sharing!

I cook 5 or 6 times a week ~ unless it's on the grill, but (like Geri) I still get everything ready

Hip Hip Hooray....congratulations Kathy! Now we REALLY need to get together for lunch ~ let's celebrate your wonderful news.

Hi Don ~ got your message on the answering machine...made me cry! Congratulations!!! Our Lord Jesus Christ is pretty awesome, and you and Letty have helped me keep my faith in him more than you know. I'll call you guys this evening. Love ya both!

Boy am I happy to see all your comments...I thought I was a nut case! I've just now finished up my treatment and am now in the "watch and wait" mode and I think every little thing is the cancer growing wild everywhere! At present, when I bend my head down to look at the floor, my entire lower body tingles...I just know it's something bad! Worth calling the doc?? Not sure! Just in my head?? Not sure of that either