JAMA article on CT-Scans

[Guest Estrea]

It was reported in the Journal of the American Medical Association that spiral CTs should be avoided until it is proven they work. Well, all I can say is thank God that not everyone listens to such drivvle...I for one wouldn't be here today if it wasn't for a CT scan! And, by the way, nor would a lot of other people be here! What should we do about this latest nonsense??

[Connie B]

He Estrea,

What mumble jumble that is! Here in Minnesota the U of M and Mayo Clinic just received an 8 million dollar grant to see if CT scans are the best detection we have for early detection of lung cancer. DAH!! I also know several other states are doing the same testing and study, so my question would be, what the heck is JAMA talking about? I do know SOME doctor's feel CT scans are not a good tool for early lung cancer diagnosis and more doctor's feel it IS!! AS WE WELL KNOW!!! I wish these News article and so called statistics would get there (you know what) together!

Warm and Gentle Hugs,

[Guest Estrea]

I had only originally heard about the article but then I got to read it. The whole reason they are not recommending CT scans is because "they are not cost effective" -- in other words, it's all about the money and the insurance companies. Apparently, they don't save enough lives for them to recommend widespread screening...it would cost too much. I get the idea that they are afraid of pissing off the insurance companies who don't want to pay for them. So, they stop the doctors from recommending them with an article like this one. OOOOH I hate insurance companies and I hate anyone who is so callous about human life.

[Cindy RN]

CAT scans are the ONLY way I have of knowing whether my CA has spread!! The cxr did not show anything in NOV then in Feb -3 months later there was a small area, off to the CT and there it was. SCLC grows so fast I can't wait every 6 months to have 1 done. GGGGGGGGRRRRRRRR I do angry once in awhile. I never had any symptoms to begin with so what should I have done.

[jmp]

I think the article is being taken out of context. Of course CT scans are

necessary when there are symptoms or for follow-up of diagnosed patients. The question is whether low-dose CT scans (The scan is different than a normal CT scan) should be used as a lung cancer screening tool. spiral or low dose ct scans are much more sensitive than a normal ct scan. The problem is there are many more false positives, than a normal scan.

When someone gets a low-dose scan they have to weigh their risks, family history, and other exposure to known causes of lung cancer.

Of course lung cancer rarely has symptoms so it is a tough choice.

Unfortunately, the state of the art still is lacking an effective test for detecting lung cancer.

So if a test only provides a 50-50 change that you have lung cancer would you take it? Knowing that you may take it - the test shows cancer.

More invasive tests are ordered - nothing is found. Now you have to monitor this for how long?? Or say a biopsy is ordered - the biopsy causes a colapsed lung. When all the tests are done - it shows no cancer.

I know from experience - I had a chest x-ray back in '89. It showed an enlarged heart. I thought I had a cardiomyopathy - I thought I wouldnt live long. Turns out after I had a 3d echo - everything is clean. I worried about my heart everytime I had any aches for a number of years.

Granted the tests weren't invasive, but still filled me with anxiety.

The best thing to do is to get people to quit smoking. Remember 2nd hand smoke also has shown to cause LC. And of course NO one deserves to get cancer - but it is a FACT that smoking increases ones risk.

And I know even if a person quits they may get cancer. But smoking also leads to heart disease and other respiratory problems that cause more deaths than lung cancer.

If there are two people (smokers 10 years) - one stops smoking, the other continues. If they both get cancer in the future, the one who has stopped probably will have more treatment options. Let's say that the cancer was caught early. The first person has much more lung capacity and can be operated on. The second person has heart problems and respiratory problems - this may reduce his chance for the best cure (Surgery)

Maybe some of the TV ads seem offensive, but smoking is constantly glamorized on TV. Any thoughts on how to stop young kids from smoking?

[Guest Estrea]

I don't agree with you on your point of view. And, I'm sorry but the article was very clear on the fact that CTs are too expensive. Don't kid yourself, medicine is a big business influenced by big insurance. It's like the mammography issue -- they are trying to derail the whole thing with "new research" and it's just a ploy by the insurance companies since it is so expensive.

I for one would never care about false-positives and "unnecessary surgery." I was diagnosed accidentally from a CT given for another reason (like Dave G our co-director) and given the choice to go in and remove it versus not, my doctor suggested and Iagreed on removing it and would do so again...even if it were benign. He said it should come out and be biopsied and I agreed...even though I had quit smoking 15 years before and stupidly thought I wasn't at risk anymore. And, there are protocols for these things. No doctor recommends surgery until it is at least one centimeter and then it is almost always malignant.

[Guest DaveG]

As Estrea said, my LC was discovered on a CT Scan which was done for something unrelated. The results caught all the doctors off guard, to the point that a second CT Scan was done, free of charge. A needle biopsy and subsequent surgery confirmed the findings of the Ct Scan. Yes, a followup Ct Scan showed another tumor, and with surgery it found that the second tumor was benign. Would I have done anything different? Absolutely not. I had someone question that with me. My answer, I had something in my lung that did not belong there, malignant or benign, it still had to go.

Yesterday I had an IVP at the same hosiptal where the initial CT Scan was done. I spoke with the xray tech about my CT Scan experience and he said that more people need to learn the value of that procedure. Yes, I will admit that there are differing opinions in the medical community, but there have been differing opinions there for centuries. As patients we have the right to seek other medical opinions. Fortunately many doctors also believe this as well. I changed oncologists, recently, because I did not feel comfortable with my previous onc. That is our right and I exercised that.

Actually differing opinions are good, as that is what leads to research. Someone has an opinion and wants to prove it. I truly believe this ongoing study will prove that CT Scans are the answer. Remember, there are those doctors who question the value of mamograms.

[Tiny]

JMP.

As a non-smoker, I take exception to your statement, "The best thing to do is to get people to quit smoking". I agree that getting people to stop smoking is vitally important, but I would also like to see some kind of universal screening policy for everyone, such as the ones advised for detection of colon, breast, and prostate cancers. I believe many more people could be helped earlier, and the increased use of PET scans to corroborate CT findings are non-invasive procedures that are coming down in price all the time.

Were it not for a CT done while investigating phantom abdominal pains, my cancer would probably still be undiscovered because I was completely asymptomatic. The pulmonary doctor was astounded when cancer was confirmed and had actually dawdled with follow-up testing because my lung function was excellent and my over-all health was superb. For years, every cold I caught had turned to crud in my chest, but my GP never recommended an X-ray, much less a CT. How I wish I had known then what I know now; I would gladly have paid the cost myself.

[jmp]

I WISH there was a test that detected cancer early. It just is not available. My mom was a non-smoker. Not one cigarette. My dad smoked but quit a while ago. Could the 2nd hand smoke increase the risk? Of course. Do I blame my dad - of course not. I blame the cigarettes.

anyway - there was a story on the news a day ago. It was about patient that was diagnosed with LC. Surgery was ordered. The person died on the table. No cancer was found.

I just dont think it is such a black and white issue. Unfortunately nothing is 100%. Each person should know the risks of the testing vs not-testing.

However, I do agree that cost is an issue. That insurance companies try to restrict the use of PET scans though they probably are the best test available.

[Guest p]

http://www.pcipr.com/RSNA/abstracts/lung_cancer_ab.asp

http://www.med.cornell.edu/news/press/2 ... ening.html

[Guest Estrea]

While we are talking about people who are at risk for LC getting CTs, that is better than nothing. The protocol for the screening is for people who are 50+ and have a huge smoking history. That would have ruled me out and I would have died EVEN IF THERE WAS SCREENING. That doesn't mean that I am opposed to screening. The objective is to save lives -- as many as possible. If we can get screening approved, we will save tons of lives...maybe not people like me at first. But, those people will become aware of the issue and may go anyway. I had my first mammogram when I was 30 even thought you're not supposed to have one til 40. Many women die from Breast Cancer before 40 -- that doesn't mean mammograms aren't effective.

Also, anyone can die anytime for any reason when they have surgery. HOWEVER, statistically, the chances of dying from a thorascopy are very slim. They don't even open you up -- they take a needle and go in and take out the tissue to see if it is malignant. If not, you are out and about the next day. Please take the time to learn the facts before you post messages on this board that go against trying to accomplish what we are fighting so hard for. We have enough of a battle with this disease...we don't need our members adding to the fight.

[Guest DaveG]

I agree with Estrea about early detection for LC. My LC, as many know, was found by accident, which seems to be the case for many. We go for a Chest xray for some other reason, or a CT Scan for some other reason, and suddenly we find that we have something else more devastating than what we were expecting. My journey, with LC, like so many others, has been a roller coaster. I have experienced every possible emotion, from anger to humor (I find humor to be much better).

These forums, at this site have been set up with just about every Lung Cancer patient's needs in mind, from support to advocacy/activism issues. The needs of caregivers have been addressed as well. We especially encourage caregivers to get involved, they are the one's on the "outside" and sometimes we, as the survivor/patient, forget that many of the emotions we are going through, they are also going through those as well. The caregivers, too many times, will mask their emotions, for the sake of the one receiving their care. Yet they are suffering right along with us. I have literally had to say "STOP" to my wife and ask her where she is at with the whole scheme of things. We have had many cries together. The important thing, do not cover your emotions, let others know what is going on. We're here for that. Don't forget, we've already been through what you are experiencing. We can relate how we handled it, but we also respect that each is an individual and reactions to this disease are different. That's why so many of us are here, because, at least one or more of us, will be able to relate.

Keep writing, I think you are, maybe in a round about way, getting the answers you are looking for.

I remember, quite well, being told that I was a step too far, but I hung in there. It was "a wake up call". We're here to help.

[Guest DaveG]

KatieB and others:

I had never given LC a thought until I had it. I figured that since I quit in 97, I would be home free. The only thing I knew about LC, were my experiences from my childhood in the 40's and 50's. My parents would come home and announce that so and so has lung cancer and only has a few months to live.

When I was told that I had LC, that's exactly where I went, back to my childhood experiences with this disease. I was scared, BIGTIME. I wasn't ready then, and am not ready now, to die. When I took this attitude, I decided that God gave me this disease for a reason. I believe that reason was that He wants me to make a difference.

Yes, I have been through all the "hoops and hurdles" of having cancer. I have gone through the anger, the "why me's", the "down and outs", denial, blaming my past habits, and the "big one", deep depression. I learned that anger can be controlled. The why me's explained why I had cancer. The "down and outs" helped me recognize that there are better times and better things. I am still trying to figure out why I was denying I had cancer, how can anyone deny they have cancer! Why blame my past habits, I didn't ask for this, but I sure am going to try and make a difference. The depression was tough, that I needed help in, and fortunately there are medications. I am not ashamed to say that I take Celexa, at least it lets me see the better side of things. I have tried to wean myself off the Celexa, but I will spiral within 24 hours. Some things we just have to live with. Cancer is one of those.

People have asked if I can ever get away from my cancer. The answer is "NO". I am reminded about my cancer every morning following my shower as I am drying myself. As I turn to my left, to dry my back, I cannot but help and see the scars on my right back, and the four smaller scars from the chest tubes. No I cannot get away from LC. It was there and it changed my life.

[Marie]

I also take Celexa and I'm not the least bit ashamed of it. I get very upset and start feeling guilty when people tell me I have to get away from it, that I can't let LC be my life. Well, it is my life, like it or not.

It's with me every day and every night and it isn't going to go away. The constant round of doctors and tests won't let it go away. Every ache or pain won't let it go away. It is who I am now and the more I am able to accept that, the better I am able to handle living with LC. Humor has definitely helped me, even if others find my comments a little sick at times.