stephf1958 Posted April 21, 2007 Share Posted April 21, 2007 First let me introduce myself. I am 48 years old, living in Portland, Oregon. I am a single mother of 2 teenagers. I starting having severe headaches in early January 2007. I also started loosing my ability to think and talk. I'd go to work and couldn't figure out how to do my job. At first I was prescribed medicine to treat the pain, but after it didn't work, my doctor ordered a brain scan. The MRI showed 2 tumors, one on top of the other, and massive swelling in my brain. The tumors were removed by an emergency craniotomy on the 20th. A biopsy of the tumors indicated metastatic adenocarcinoma (Stage IV non-small cell lung cancer). Before I had surgery, I had a head-to-toe CT scan to see if any other tumors could be located. A couple tiny (>3 mm) spots were found, one in each lung, and 2 lymph nodes were enlarged (8mm & 12.5mm), but nothing that was large enough or easy to biopsy. A later PET scan lit only for the 2 nodes, not the spots in my lungs. Does anyone know how they can say it's lung cancer when there isn't a tumor in my lungs? I have no symptoms of lung cancer either. I started chemotherapy on February 21. I get carboplatin and taxol every 3 weeks. I had a CT scan on April 2nd (after 2 treatments), that showed the lymphnodes had returned almost to normal size. Whole brain radiation was not started, as I lost some cognative skills after surgery (all have returned, thank goodness). Also the doctors wanted to start chemo right away. I will continue regular brain MRIs. The 1st one (1 month after surgery) was clean, the 2nd on showed 2 spots where one of the tumors was removed, but are too small to tell what they are, so I must wait another month. If the spots are tumors, then I'll get the gamma knife to the brain. So, I am now seeking out support. Initially, I couldn't read for more than 5 mins, so never did any research on this disease. That was probably a good thing, as I don't like what I'm finding out. I simply cannot believe that I have a terminal disease. At least the docs treating me, though they tell me I'll die from this eventually, say it won't be in the immediate future (because there is so little cancer? I don't know). I have heard that I have 6 months, but refuse to believe that (though I did set up a trust and update my will) There does not seem to be a single group dedicated to lung cancer in Portland. There is a ton of stuff for women with breast cancer, and some for other types, but nothing for lung. What's the deal? I actually had someone wrinkle thier nose when I told them I had lung cancer, like I was dirty or something. That kind of reaction is not fair. Quote Link to comment Share on other sites More sharing options...
laban Posted April 21, 2007 Share Posted April 21, 2007 Welcome to this site. You have found an answer to a prayer. The people here are devoted to understanding and helping everyone who comes in and shares there story. You will be able to see by my husband's profile the ups and downs of the disease. You have come so far in a very short time. Keep your spirits up, don't listen to those docs who give you a timeline and stay here with us for encouragement and strength. Laurie Quote Link to comment Share on other sites More sharing options...
Treebywater Posted April 21, 2007 Share Posted April 21, 2007 I am sorry that you have to be here, but glad that you found us. I think you will find a lot of hope here, and I know you will find a lot of support. If I understand correctly, they are able to tell from the pathology of the tumors (cell type and so on) what kind of cancer you are dealing with. It seems that there may be a couple other people here who have been diagnosed LC w/o finding any in the lungs, so hopefully they will speak up. I'm also sorry that you've already been so snottily introduced to the stigma of the disease. You're right, that shouldn't happen and it is the last thing you need. Rest assured this is a stigma-free zone. Don't listen to the stats or any prognosis. You are YOU and YOU can beat this. We ARE here to support you. Quote Link to comment Share on other sites More sharing options...
Kasey Posted April 21, 2007 Share Posted April 21, 2007 Welcome ((((Steph)))), Just so you understand those parenz are HUGS to you! You are dealing with a full plate and have come to the perfect place for information, support, compassion, and some humor which we all need dealing with this disease. Yes, stigma schmigma to lung cancer. Please try to rise above that. We have all been there and strive to educate and move past what 'some' may think of our disease. For now, know that you are not alone and never judged. We are here for whatever you need. You will soon catch on. Look through the site and find the many late stage survivors who not only are here....but thriving. Whenever you have time......fill out your profile (like what we all have beneath our names) which will help us all help you better. Kasey Quote Link to comment Share on other sites More sharing options...
Don Wood Posted April 21, 2007 Share Posted April 21, 2007 Welcome! Glad you found us. Let us know how we may support you. Don Quote Link to comment Share on other sites More sharing options...
ernrol Posted April 22, 2007 Share Posted April 22, 2007 Welcome to the site. You will get a lot of support here. Forget about their prognoses and do what ever it takes to beat this. Keep us posted. Stay positive, Ernie Quote Link to comment Share on other sites More sharing options...
Welthy Posted April 22, 2007 Share Posted April 22, 2007 Welcome to the community and glad you found us, but sorry for the reason. My BIL (brother-in-law) was diagnosed with 3 brain tumors. One was surgically removed and the other two zapped by radiation. He was told that it was an unknown primary, but they thought it was lung cancer (called it adenoma) even though they found no tumors in his lungs. His did advance to his adrenal gland and eventually to his liver. Classic lung cancer sites. Aggressive treatment and good Doctors is key. He was limited to a county hospital because of his insurance (he had worked there), but still did very well. Sounds like you are doing good. Stick around and keep us updated. Oh, and welcome to the wonderful world of lung cancer being ignored. It is irritating. Regards, Welthy Quote Link to comment Share on other sites More sharing options...
Heather_T Posted April 22, 2007 Share Posted April 22, 2007 Welcome to the site. You will find alot of support here. Positive thoughts for you and your family. Quote Link to comment Share on other sites More sharing options...
Flowergirlie Posted April 22, 2007 Share Posted April 22, 2007 Hi Steph! Just sending you thoughts of peace and comfort. Welcome to the best lung cancer community. Flowergirlie Quote Link to comment Share on other sites More sharing options...
fillise Posted April 22, 2007 Share Posted April 22, 2007 Welcome Steph! Like everyone else, I hate that you have to be here, but since you do I'm sure glad you found this site. It is a great source of information and hope. My mother's cancer was also diagnosed from the pathology of tumors on her spine. They thought it was a recurrence of breast cancer, but the pathology says lung. One thing I have learned is that a cancer is always the primary cancer, no matter where it spreads. e.g. if you had breast cancer and it spreads to the liver, it is still breast cancer and not lover cancer. It may seem like mere semantics, but it's not--it makes a huge difference in how the cancer is treated. My mother's primary tumer in the lung is very small and had given her no trouble there either. We wouldn't have found it when we did if not for the back pain she was experiencing. It seems to me that I have read somewhere (and if I remember I'll send you the link) that the primary tumor doesn't have to be large to spread. I know it is confusing. A second opinion is always in order if you are in doubt about your diagnosis or treatment. If you oncologist is not someone who will answer your questions, I suggest searching for another doctor who will. You need to be a partner in your reatment and an advocate for yourself! Please know that we are here for you! Susan Quote Link to comment Share on other sites More sharing options...
Ry Posted April 22, 2007 Share Posted April 22, 2007 Welcome- I am glad you found us. We have many members here that were diagnosed as stage IV that are doing very well and have been for some time. My husband was told to get his affairs in order almost 5 years ago- so don't pay attention to the 6 month prognosis. Rochelle Quote Link to comment Share on other sites More sharing options...
recce101 Posted April 22, 2007 Share Posted April 22, 2007 Hi, and welcome to the LCSC! [ stephf1958 ] ...I simply cannot believe that I have a terminal disease. Most of us don't use that word, not because we're trying to sugar-coat a life-threatening condition, but because it means such different things to different people. In a manner of speaking, aren't we all terminal at birth? ...they tell me I'll die from this eventually... No one can say that with certainty. At a very minimum, "may" should be substituted for "will." I think of it as "living with cancer" and managing it as any other serious chronic disease -- or "dying with cancer but not from it." I have heard that I have 6 months, but refuse to believe that... Good for you! Such prognoses are more than meaningless to any individual patient. They're supposed to represent the average survival time of a large group of people who received the same diagnosis, so of necessity they're based on historical data -- and this 6 months stuff sounds to me like rather OLD historical data. But even if you were told a year, 18 months, or whatever, that's still an average and not relevant to you or me as individuals. No one can reasonably say that you or I "have" or have been "given" x-number of years or months. It just doesn't make sense. See, now you've got me started!! Please keep us posted. I think you've done very well so far! Aloha, Ned Quote Link to comment Share on other sites More sharing options...
trish2418 Posted April 23, 2007 Share Posted April 23, 2007 Welcome, Steph, and I'm glad to see you've been embraced by our wonderful community. Let us know how we can help you. Trish Quote Link to comment Share on other sites More sharing options...
wendyr Posted April 23, 2007 Share Posted April 23, 2007 Hello Steph & welcome. We;re so sorry you need us but glad you found us. You'll find a tremendous amount of knowledge, compassion & support here. Please keep posting & let us know how you;re doing & how we can help. Good Luck & God Bless wendyr Quote Link to comment Share on other sites More sharing options...
stephf1958 Posted April 23, 2007 Author Share Posted April 23, 2007 I appreciate all the comments, and know that I have found a good place! The internet has finally provided some hope I did want to add a little bit of info. I did get a second opinion, at OHSU (Oregon Health Science University). The doctor who saw me told me 6 months, but I was the one who asked for the statistics. My oncologists (medical and radiation) have refused to give me a date, as they have told me it is all up to the individual patient. I went to a lung cancer presentation last week, and the OHSU doctor gave a presentation, listing the same awful numbers, but she said that no one has an expiration date on their foot! (To bad she didn't tell me that in February ) As for support, I just started looking for a group in town, and there isn't one for lung cancer. I just wanted to talk to folks with the same condition. My family (who across the country) and friends have been super suportive, but they don't really know what it is like. I plan to attend a group for cancer patients in general, and have just found a 6 week workshop "Living Well with Chronic Conditions" that I plan to go too. I think I will try to start a lung cancer group, but as yet haven't a clue how to do that. p.s the picture I added is of me one month after brain surgery and one week after my first chemo treatment! Quote Link to comment Share on other sites More sharing options...
fillise Posted April 23, 2007 Share Posted April 23, 2007 Steph--You look great! I can see your fighting spirit in your eyes and that may be the best medicine of all! Susan Quote Link to comment Share on other sites More sharing options...
barbara5452 Posted April 23, 2007 Share Posted April 23, 2007 Steph, your in the best place you could be and that is this site. A lot of stage IV survivors here that I'm sure were told 6 months and have been here alot longer. Stay Strong.... Quote Link to comment Share on other sites More sharing options...
raneyf Posted April 24, 2007 Share Posted April 24, 2007 Hi Steph, It's wierd how we look and feel good, but have this "horrible" disease. I don't really get it either, but I'm happy not to be having symptoms. Praying for a cure for us all. Raney Quote Link to comment Share on other sites More sharing options...
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