Elaine Posted September 25, 2004 Share Posted September 25, 2004 I sent a few quieries out to some publications that accept freelance work. One of my "topics" was called "The Stealth of Lung Cancer" and ends up advocating for early detection to be implemented immediately based on the tests done in the 1970s and 1980s used out of date CT imaging. A fairly major national publication has expressed an interest in hearing more about this. Most of the article, as I envisoin it will be about the subtle, "silent" and tricky nature of the disease and how early signs are overlooked or shrugged off.. Probably all cancers are somewhat "stealth bombs' but I don't know that much about them. For example, if I go back three years, I can tell you that I did have signs and symptoms, some of which I did report to Drs. and some were so everyday that I didn't think much of it. As a matter of fact, my right shoulder scapula area has hurt going on 20 years. Non-progressive or if progressive, then ever so slightly until recently. Another example is that my feet and then hands began to fall asleep more often than usual and for no apparent reason well-over a year before DX. When I mentioned this, I was told that it couldn't be anything, as if it were diabetes it is a late symptom of diabetes! I now know that it, coupled with other things, proves it certainly was a symptom of a paraneoplastic syndrome almost exclusive to lung cancer. Ever so often I would cough up clear sputum with some kind of brownish grey material in it. I was told that it was because I had stiopped smoking and/or that smokers always do that! My list is long and I don't mean to bore you with it now. Anyway, I have not been offered a contract YET to do the story. If accepted it would be a feature story since I can't really do an unbiased story due to my own involvement. I can either write this as a profile of myself, but I think it would be better if I had other examples. If anyone here also believes, retrospectively, that he or she or a loved one did, in fact, have symptoms or signs over a year before DX, and would like to be interviewed for possible inclusion, please let me know. You do not have to have went to a Dr about the condition, but if you did that is fine. This is not a story about horrible doctors! This is not a story about how we have been mistreated! This is a story about how subtle things can be missed and that early screening will benefit all. I do believe that early screening will eventually be accepted, but in the meantime maybe someone will read the article and notice some of these signs and have their cancer caught early. I know that many of you did not smoke and thus I don't know that early screening for smokers and ex-smokers will be of benefit to you or not. I am sorry for that. If you would like to be interviewed, probably by phone, please let me know. If you would like to suggest other things to me about this proposed article or a different way I could go with this, also let me know. All feedback and constructive criticism would be appreciated. If you are absolutely certain that you or your loved ones had NO signs or symptoms, AND you have medical records that show you had no abnormality on lung function tests a year before DX for NSCLC, I would also like to talk with you. Deadline to contact me is OCT 1. elaine Quote Link to comment Share on other sites More sharing options...
kimblanchard Posted September 25, 2004 Share Posted September 25, 2004 Three cheers for Elaine! Keep up the good work. We look forward to the published article. Curtis Quote Link to comment Share on other sites More sharing options...
Frank Lamb Posted September 25, 2004 Share Posted September 25, 2004 Elaine,This is an awesome opportunity for you and countless numbers of others.I truly hope you get what your seeking here.It not only would benefit you and I and the others on this board,but so so many others as well.Great effort and great job. PS: I'm glad your doing the editing and not I.You are right about my spelling and typing.(not the best on the block)Ha Ha. Quote Link to comment Share on other sites More sharing options...
Elaine Posted September 25, 2004 Author Share Posted September 25, 2004 Frank, your spelling and writing are fine! Quote Link to comment Share on other sites More sharing options...
JaneC Posted September 25, 2004 Share Posted September 25, 2004 Elaine, That is GREAT news. Thnks for working on this. Looking back, I had not felt well for at least a year but my primary complaint was fatigue and increased sweating. (does anyone know if increased sweating -like hot flashes especially with stress - is a symptom?) When my fatigue and SOB got so bad, they did a chest X-ray mainly to look at my heart. The possibility of lung cancer was NEVER on the radar screen. Quote Link to comment Share on other sites More sharing options...
Elaine Posted September 25, 2004 Author Share Posted September 25, 2004 Jane Increased bursts of short lived sweating was/is one of my symptoms, too. The symptom would come and go--was told it was probably menopause but I had not had a period in over two years at the time they began. I also had some slight night sweats that also came and went. Quote Link to comment Share on other sites More sharing options...
TAnn Posted September 25, 2004 Share Posted September 25, 2004 Jane and Elaine, I was told by my nurse practitioner in my oncologist office that the tumor itself can cause "hot flash" type symptoms. Don't know the technical reason why though. TAnn Quote Link to comment Share on other sites More sharing options...
elnodel Posted September 26, 2004 Share Posted September 26, 2004 Great opportunity to get some facts out there, Elaine. I'll try to figure out (with his help) if Len had any real symptoms -- but the records get blurred by his very real allergies, which are still abundant, and a first class case of hypochondria! I'm so glad you've got this opportunity! Ellen Quote Link to comment Share on other sites More sharing options...
stand4hope Posted September 26, 2004 Share Posted September 26, 2004 Elaine, My husband did have headaches prior to diagnosis, and actually had them a LOT - every day, and for several years. He said it was sinus and took tons of OTC sinus medicines but still almost always had a "sinus headache". I tried many times to get him to go to an ENT but he thought he would have to have that "nasty" surgery and said he couldn't be off work that long. He did go to an ENT doc when the headaches got so bad. Amazingly, he has never had a headache since that first dose of decadron after dx. Not one headache! and it's been more than a year. He still has some heavy-duty sinus drainage - but NO HEADACHES! I haven't brought this up with him at all because it wouldn't do any good to go back and say "if only". I'm afraid I can't offer his name to be used in your article, but you are more than welcome to use these facts about him if that will help. Love, Peggy Quote Link to comment Share on other sites More sharing options...
richinsdakota Posted September 26, 2004 Share Posted September 26, 2004 Interesting....well I too had some unexplained "night sweats" in the last year or so before dx. I also have severe back pain in thoracic region which has been called Degen. joint disease for 15 yrs. or so. (MRI spine soon). Were checking it out because of the recent connection made between cancer and cox 2 enzyme (being present on lung cancer tumor cells. ) Also; I remember news report of a study couple yrs. ago, (England?), where majority of cancer patients reported "hurting all over" prior to being diagnosed. This was certainly true of me...could be degenerative joint pain..or....cancer-producing cox 2 enzyme flood???? Speculative at best, but interesting coincidences. Anyway..for what its worth...keep up the good work...Rich Quote Link to comment Share on other sites More sharing options...
Elaine Posted September 28, 2004 Author Share Posted September 28, 2004 Thank you all for responding by PM or on this thread. I am working on the questionaire. I have noticed a few similarities and am wondering if there are others out there with the following symptoms, who might be willing to participate. 1. Night or day sweats 2. Joint pain 3. fatigue between 2 months and 1 year before DX 4. general malaise between 2 months and 1 year before Dx 5. long standing discomfort near the area of tumor in either chest or back. 6. parathesias (hands and feet falling asleep) I am still looking for anyone who is either Stage IIIa or IIIb or IV who had no symptoms ONE YEAR before Dx and who has evidence of normal to above normal pulmonary lung function tests a year or so before DX. Even if you don't think you would be willing to be interviewed for the article, but have had any of those symptoms prior to DX or any other non-speciific symptom, pls let me know but that you would prefer not to be interviewed. Thank you again for your time! elaine Quote Link to comment Share on other sites More sharing options...
betplace Posted September 28, 2004 Share Posted September 28, 2004 Elaine, I also had general fatique the year before DX, I also had hot flashes, but that could have been menopause. I have heard that a droopy eyelid is a symptom, and I have a droopy eyelid. I noticed it at least 5 years before DX, so I have no idea if it relates or not. My major symptom, a spasm type pain under the left side of my right breast started about 2 months before DX. Hope that helps. Blessings Betty Quote Link to comment Share on other sites More sharing options...
lilgna Posted September 28, 2004 Share Posted September 28, 2004 I had been treated for almost 6 mths prior to actual DX, for what was shoulder pain Dr said it was neck related, I also had two pnemonias that had chest xrays, that looked like fluid, that was brushed off, at least 1 yr or more before DX. I think Dr need to be made aware that sometimes pain in and around the neck, shoulder, back areas need further investigation if only a chest xray or Ct preferably, especially if it is persisitant. Quote Link to comment Share on other sites More sharing options...
kimmek Posted September 28, 2004 Share Posted September 28, 2004 I think mom most definetly fits your criteria, would be more than glad to be interviewed and im sure she will help also, as i was not going to all those appointments she ran around too during the past yr or so Just give me a hollar, in the meantime i will try to put a better timeline together for you Kim Quote Link to comment Share on other sites More sharing options...
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