Suzy: lung carcinoid: age 32

Hi my name is Suzy and I was diagnosed in May 2005 with carcinoid cancer in my right lung. I had my upper right lobe removed and of course I was told "you are cured". If you get cancer this is the cancer that you want to have. Anyway other than dealing with ignorance I have been complaining about headaches, fatigue and just not feeling like my normal energetic self. I have had some scans done which have all come back negative (so they say) but I know for a fact it is back they just can't see it because the tumour just is not visible yet. Before I was diagnosed I had pneumonia for about 4 months I lost about 20lbs. I was so tired that I did not have enough energy to even shower, I had to choose between getting the kids ready or shower and be clean. Many doctors are clueless as to how serious Carcinoid cancer is. Even if it’s typical or atypical I believe that it’s so darn typical, no matter what, that this demon will come back anyway. Sorry to sound so bitter but I think a lot of patients have so much anxiety because doctors need to be more educated on Carcinoid cancer.

I guess the only positive thing about being diagnosed is meeting and getting to know others that can relate and share their stories with you. I sound like a broken record when I complain to my family about Carcinoid although they are all so wonderful and very supportive. Only other lungnoids and people living with carcinoid truly understand what we go through. Yes I have had an octreotide scan. It came back negative which was back in 2006 but it just feels like no one is listening. For me it is just a waiting game. I have good days and bad days, mostly good days but I know it will come back again. For everyone suffering with this disease may God bless you all and I feel for all of you, tell your family, tell all your friends let’s get the word out there we NEED SO MUCH MORE SUPPORT.