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Something we might be able to do here


Elaine

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I was on a site a few days ago regarding Ovarian cancer. There was a section called something like "stories" and people posted their stories, all in one narrative, mostly focusing on how they were dxed. Ovarian cancer is somehat like lc in that it often does not "present" early--thus it is hard to "cure."

last week on the Early Stage section of this forum, people were asked to write their stories of Dx. That thread has been taken off along with whatever else was on there. Anyway, the conclusion seemed to be that nearly all early stages who posted had been dxed almost by accident.

But that did get me thinking, (always a bad sign) and I know I have been going back in my mind over the past year, and I had signs and symptoms, that in retrospect, were indicators that something was amiss. I was dxed late, but had I known the signs, I could have been dxed at least a year sooner. That might have made a BIG difference. At least I might well have been a surgical candidate. Anyway, I wonder if those of who are Late stages could also tell think back and see if we can post some info that might help others.

Most people just associate lung cancer with coughing. I have what seems to be a non-consequential cough, even now. Coughing, is not the only presenting symptom. ANd some of the symtoms are "strange" and/or seem to be something else, like arthritis, or just getting older. Anyway, jsut wondering what others thought of this idea and if it is of value.

It might be its own section, so that people who come here don't have to read back through sometimes hundreds of posts to get the "story." Does that makes sense??

I am not feeling well today, and fear I am not making sense, even to myself lol.

Elaine

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Actually, Elaine, you made a lot of sense - go figure!

It WOULD be nice to have one place with everyone's "story"... The only "early" thing that was different with me (I'd had an employment screening, chest X-ray, etc. two years before diagnosis, a different chest X-ray 9 months before diagnosis) was an abnormal amount of white blood cells in my urine - the tech said "Your body must be fighting and infection somewhere, follow up with your physician."... Well, GEE, that's pretty darn generalized to start ordering tests on a relatively young non-smoking woman, dontcha think?

Anyway, if it takes wing and takes off, I'll post more there - otherwise, my very first post lists the story to that point pretty well!

Becky

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MORE! MORE! MORE! people need to know that this disease is not caused by smoking. Smoking may be a contributing factor for some but not for all of us. Doctors need to pay attention to people that don't fit their criteria for LC patients. In order to do that people need to be advocates for their own health. One way to do that is tell our stories about diagnosis and perhaps lack of symptoms. So that people will understand what they may be looking for. you can get LC when your young, even if you've never smoked, or even lived with a smoker, you may not have a cough, etc.

Mine was diagnosed because I had pain in my shoulder. I was early 30's, never smoked, no cough, no shortness of breath etc. I just had an ache that didn't go away. My PCP did an x-ray for bursitis and saw the spot.

I think it's a great idea.

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Elaine,

I agree too. I do recall Carlton's post about it also. I am always curious about how people were first diagnosed. Becky, every year I had a physical and it always indicated good health, except my white blood cell count would be elevated a couple of points- no red flags though. I never even thought about that. I had no real symptoms that I noticed, until the center of my chest ached on and off. Ekg was normal, so I had an x-ray and a spot the size of a pea, which was barely detectable, showed up. The pulmonologist said I had a good radiologist, because he himself would have probably not even have noticed it. I just have to say that Connie B.'s story gave me such inspiration and hope. I would really like to see that forum return. I still search the internet for others like her, but have found few. Connie I would read and reread your posts! Thank you! You are and will always be my hero!!!

Cheryl

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I posted my story last week in the Early Stage section, but for those who missed it and are interested, here it is again. I am a breast cancer survivor (coming up on 3 years now--yea!). Last May, after my mammogram and during a follow-up visit to my breast surgeon, he suggested I get a chest X-ray because I was a smoker and because it had been two years since my pre-surgery chest x-ray, which was clear. I also had a CT for planning for my radiation treatment for the breast cancer in July of 2001 which was fine.

I got the x-ray only because he told me that I wouldn't have to come back or wait. I wasn't too anxious to tie up any more time than necessary with doctors as it was getting nice here in the Midwest and I wanted to be outside.

I got the call the next day to get a CT because something was showing up on my x-ray that was not there on the previous one. Looked like a pneumonia, but DUE TO MY HISTORY, should be investigated thoroughly.

CT led to the phone call from surgeon--"you have a mass on your lung".

Although I have been told and told and told that this has nothing to do with the radiation treatment I received for my breast cancer, I will never be convinced that the two are related. Both problems are on the same side of my body. My smoker's cough, which used to go away immediately if I cut back on the cigs, changed during the radiation treatments.

Plus, Connie B wrote on that thread that she knew of a couple of other women who had the same thing--breast cancer, then a couple of years later, a lung tumor on the same side.......doesn't really matter I guess, I am just considering my breast surgeon my Guardian Angel now.

Anyway, discovery of this was a total coincidence....no pain, just a smoker's cough that went away every time I cut back on the cigs.......That's my story.

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I have written my diagnosis story more than once on this board--I think it is on the Welcome section somewhere. But in the last year I have thought a lot about symptoms that i had been having for several years that are now explained by the lung cancer.

I had bronchitis at least twice a year every year--doctors treated it and told me I had seasonal allergies. I live in a pine forest--it seemed reasonable.

I have been shorter of breath than the people around me for at least four years. I wrote it off to the weight I gained in graduate school and to not exercising like I should.

I have a semi-permanent knot in my shoulder between the right shoulderblade and my spine that has been there for years and is always sore. Massage helps it, but it never goes away. Doctors told me it is a result of stress. Now they tell me that my shoulder hurts because of where my tumor is and the nerves it is pressing on.

Aside from doing more checking on the frequent bronchitis, none of these things are probably enough for a doctor to have started thinking lung cancer in my case. But I hadn't had a chest x-ray for almost 20 years in spite of at least 15 rounds of bronchitis in that time period and 2 diagnoses of pneumonia. Would an x-ray have caught it sooner? I don't know--depends on how much sooner the x-ray was taken. When my tumor was found, it was the size of a chicken egg, so it very likely could have been seen a year or two sooner. But I would have had to have known that my symptoms could be worse than just allergies, and I would have had to press for more tests.

Becky

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This is something I talk about a LOT with folks I know (and a few I've only just met! :)). Considering how long most lung cancers take to develop and how high the survival rate is when detected early it seems almost ludicrous (sp?) to me that x-rays and ct scans aren't part of any annual or work physical. The VA (in other words YOUR taxes) are paying a TON more for my hospice care, mobility device, oxygen and associated medications than they (i.e. YOU) would have for a surgery and adjunctive chemo had this been caught at stage I or II.

Anyway, the first symtom I can possibly atribute to my cancer came almost 8 years ago. I was working at a school for developmentally disabled children with sever behavour problems. Many of our kids were "runners". When they'd take off we had to chase them down as they had no safety sense at all and would run into things or into the street or something. The little boy I was responsible took off and I took off after him. Suddenly I got this strong pain in my right lung. It took quite a while to go away (about an hour) and I had a much harder time than usual regaining my breath. I passed it off and didn't think much about it. About a year later I came down with a bad case of bronchitis, something I never had before. Thinking back I can't remember getting an x-ray (I was with Kaiser at the time) which, in retrospect, seems a bit strange considering the doctor diagnosed a lung disease.

Over the next few years I noticed a general decline in my stength and stamina. The last year before my diagnoisis I complained of feeling tired almost all the time. I attributed this to stress at the time and, because of life's situations, it was quite natural to assume this. But is seemed no matter what I did I couldn't get my old energy and vitality back. Finally there came a day I had to call for a relief driver to take over my route because I was too weak to drive (see my reply to Jerrye in the Welcome forum). And THAT was when my cancer was finally discovered.

Dean

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Hi everyone- It was so interesting to read your posts on how you were diognosed and again i feel it is a good idea to have something on the boards so all can post their story. It will help a lot of folks. Calton

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