Mis-DX Too much

[karen335]

Question... Is there a possibility that LC in particular

is being Overly Dx.. Is there an epidemic (sp?) with LC?

If you notice we are almost all baby boomers. I hope I

am not out of line by asking this, it just keeps crossing

my mind and wanted to see what others thoughts are regarding

wrong Dx.. Is the chemo and tx doing us in?

We are only a few here. There are many that we don't know

about that have been dx with this disease...

I don't mean to or want to offend anyone. Just curious.

Thanks,

Karen

[cindi o'h]

Karen,

I am of the opinion that lc is one of the deadliest cancers because of mis-diagnosis, underdiagnosis or late diagnosis.

I had at least five chest xrays in the two years prior to diagnosis. I had symptoms that were evaluated by a cardiologist with a cardiac stress test, but no chest xray at that time. That was two years before I was finally diagnosed.

One year prior to diagnosis, I was in the emergency room with symptoms. There was a chest xray again. There was a definite lesion on the film at that time, but no one told me about it. My brother had just passed away from lung cancer two weeks before this ER visit.

Seven mos. prior to my diagnosis, I had a pre-surgical xray. The medical asst who took the xray informed the doc that something did not look right to her. The doc showed me the film and I could see that white, dense cloud which screamed tumor to me. She told me that she would have a radiologist read it.

The following week, I had another chest xray by a chiropractor. He sent it to a chiropractic radiologist. That radiologist said that there was something that should be evaluated. I sent a letter to my MD. asking her to please take into consideration that I had two brothers who died from lc. I followed up with a telephone call. She told me that her radiologist said there were no areas of concern. I asked her again to re-submit it , as the news I got from the chiropractor was inclined toward a follow-up. Her response to me was: "My advice to you is to stop seeing chiropractors."

Seven months later, another ER visit. This time, another chest xray. Compared to the last chest xray, from the previous year, there was an alarmed level of suspicion. I was diagnosed within one week of lllb nsclc.

Of course, I contacted the radiologist and asked her why she did not see this obvious tumor. She did review the film and offered no explanation on how this was overlooked. She said that it was her worst fear come true of overlooking disease. And she apologized.

I have been watching about diagnosis. In my opinion we are an under- diagnosed lot.

Maybe someone else has an opinion on this subject different from mine. There is evidence that if lc were caught earlier and our disease were treated earlier, that our chances of survival would be increased.

cindi o'h

[Lisa O]

Karen,

You are right about this... and it is true of any disease. There should be a second opinion on any diagnosis. I have had my slides read by 4 Cancer centers (I happened to be seeking treatment there anyway) but cancer diagnoses are not always as cut and dry as one may believe.

I have heard of this happening to several people.

[lilyjohn]

I'm going to stick my neck out here. As anyone who has read my posts know I have always believed that Johnny did not die of cancer but the medications given to him. I have a lot of proof to back that up. That is not the point I want to make now however. I have often spoken about what I call the deadly attitude toward Lung Cancer. Recently I was asked to wrtie the story of Johnny's death and treatment for a web site. At the end of my story I summed up what I mean about that attitude. It goes right along with this subject we are on now. I did not come by these ideas off handedly. I came to these conclusions because of what happened to Johnny and over 2 years of research. Research that took me from the web information on drugs to the Physicians Desk Reference to the Nurses Handbook. It also came from stories I have read on this and other message boards. It came too from personal letters that I have recieved from people who do not feel comfortable talking about these things in the open. Following are the conclusion I have reached and why I say it is a deadly attitude.

I have written much about that attitude and now I want to try to explain what I mean. There are at least two sides to that attitude, each as dangerous as the other. Lung Cancer is the only major disease still seen as something a person brings upon them self. Even AIDS has become a disease that people no longer see as something that people deserve because their life style asked for it. Sense tobacco smoke has been linked to Lung Cancer most research into other causes have been stopped.

Billions of dollars are spent world wide every day trying to find a cure for AIDS and other forms of disease. Lung Cancer has become one of the biggest killers in the world yet only a fraction of the money spent for research on other diseases is spent on Lung Cancer. Why? Could it be the stigma attached because of the connection to tobacco smoke? The idea that people bring it on themselves?

Only 15% of smokers ever develop Lung Cancer. On the other hand nearly one third of those diagnosed have never smoked or been exposed to excessive amounts of tobacco smoke. The fastest growing number of new diagnoses is in women in their thirties and forties who have never smoked nor been exposed to smoke. It seems that should make someone take notice and try to find out why.

I have heard some real horror stories associated with that part of the attitude. There are actually people who have been called liars because they tell people that they never smoked but still have Lung Cancer. Not only by those who don't know any better but by those in the medical profession who should know better. Then there are those who are not diagnosed until they are in the latest stages of the disease. Why? Because despite having all of the symptoms their doctors would never order tests for Lung Cancer, in some cases not even a simple chest ex ray. The reason given was because they did not smoke so they could not have Lung Cancer! And that came from professionals. People that a person has to trust their life to.

The opposite happens to those who have smoked like Johnny. When something is seen on an exray it is assumed that it is lung cancer because the person smoked. Often testing is miminal. It takes a series of tests to not only determine if a person has lung cancer but what type it is. When the assumption is made often those tests are never taken. There are many things that can show on an exray. Even a CT scan can not give an accurate diagnosis. A biopsy of the lung is the only way to be sure and often it takes even more than that to give an accurate diagnosis. A lymph node biopsy is an indication but it is not a way to make a positive diagnosis. It also normally takes one to three days to get what information they can from one!

Now I come to the other side of that attitude. The side I know is responsible for Johnny's death and possibly hundreds if not thousands of others. Lung Cancer even when caught in the earliest stages is considered a killer. No matter how determined the patient or the doctor is to beat it there is always that underlying thought. Even the best most aggressive doctors do not really have faith that the person can be saved. They may try to always show a positive attitude but what they would never say in words comes through in both body language and often in the treatments they prescribe.

Medications can be a God send for someone who is suffering. They can also be killers when given indiscriminately. Often those drugs are given to Lung Cancer patients under conditions that they would never be given to anyone else. There are multiple warnings about them affecting a person's breathing. There are also warnings about mixing some of those drugs. I will never forget what I was told by that pharmacist on the Washington medical board. "When a person is diagnosed with Lung Cancer they are considered terminal and all precautions no longer apply."

I have been involved in many discussions about statistics. Most people agree that they are not only inaccurate but dangerous. Statistics take away hope when they are as bad as those associated with Lung Cancer. I believe that those statistics are what cause doctors to not have any hope of curing a person and throw away caution when giving drugs that can and do kill. How many deaths actually occur because of those drugs not cancer?

Those statistics are at least partly responsible for that deadly attitude, the treatments given because of the statistics cause more deaths. A vicious circle just continues. The statistics end up feeding themselves. The losers are always the patients who have to not only fight the disease but that attitude as well.

Time and time again I encountered that attitude while caring for Johnny. I was even asked point blank what I was going to do when he died. I was asked that question at a time when he was so well that it seemed certain that he would beat the cancer. I was also asked it by a cancer surviver! Someone who should have known better. When I questioned them allowing him to become addicted to the Vicodin I was told time and time again "what difference does it make? he has Lung Cancer". The difference it made was his life, not only his life but the quality of both of our lives the last few months that he lived.

When as a care giver to a loved one your hope is constantly under attack it takes a heavy toll. No matter how hard you try that hopelessness affects your behavior. It can also be transferred to the patient by body language and other things.

I can not help but wonder if the medical professionals approached Lung Cancer like they do other diseases how many more lives could be saved. In most cases doctors treat an illness or medical problem like something they can either cure or control. I hope that someday they will apply that same attitude to Lung Cancer.

Now I come to something else that I believe very strongly in. No one has the right to judge another's quality of life. No one has the right to end a person's life because they judge their quality of life as not worth saving.

In almost every instance I have noticed that a person died not long after receiving Morphine. That is a subject that I have had lengthy discussions about with a number of people. I know that in some cases when a person is actively dying Morphine eases them out of this life with less discomfort. I have no problem with that. My problem comes when it is given when a person is not actively dying or for things it is not meant to be used for.

I believe that no one has the right to play God!

I know that cancer did not kill Johnny. I also suspect that he may not have had cancer. If he did I am sure it was in a much earlier stage than we were told. I strongly suspect that fungus was a large part of what was in his lungs. I have read about others who have had fungus at the same time as cancer even when never exposed to the things that Johnny had been.

Johnny never fit the pattern of those who have Lung Cancer. Not from the moment he was diagnosed or during the time he was dying. As soon as he received treatment for pneumonia his condition started to improve. By the time he started chemo he had already started to gain weight. He had no pain. His breathing steadily improved along with his lung sounds. While at chemo the differences between him and the others being treated were very obvious. During his death he displayed none of the things that are normally a part of the dying process, especially those associated with Lung Cancer.

Not one time did he receive the proper testing needed to not only give an accurate diagnosis but to rule out other problems. He was never tested to check for liver damage caused by drugs. A standard precaution in most people being given any drugs that could affect their liver. He was also never seen by a pulmonaligist to evaluate his lungs or help with the problems caused by his disease and the medications he was being given. From the very beginning his treatment was substandard to say the least. Even more it was harmful.

I believe that many of the reasons for that were because he was a smoker and also because he was older and alone before I got there. Often the doctor he was going to (the referral doctor) would not answer his questions. The only time that Johnny ever got any kind of answer or co operation from him was when his son showed an interest and went with him. I find something very wrong with that.

Had his doctors tried to find out why he didn't fit the pattern they saw in other patients they may have saved him. At the least they could have saved him much of the mental anguish he endured because his anxiety problem was never properly treated. By following his case to learn why he did so much better than most others they could have possibly learned something that would help others someday. At the very least they may have learned how and what to check for that could be at least partially responsible for other things, fungus specifically. Because they tried to make him fit the pattern that they knew instead of finding out why he didn't he lost his life and an opportunity that could possibly have helped others was lost.

[alibass]

Think everyone makes some definite good points. Have been frustrated with the statistics and what I see as a lack of effort of public awareness of lung cancer.

I think of it as - statistics are used as a measurement of positive or negative results, not as a gauge. I read somewhere (think it was on the blochcancer.org webiste) something about statistics. If you're alive, then your statistic is 100%. If you aren't then it is 0%. Although I do know some people that I think aren't all there, I do take this to heart - its either 100% or 0% and any other life statistic is meaningless. I do look at percentages for chemical results, but I don't look at life expectancy, just pecentage of people that had tumor reduction. It's probably my naive way of coping, but it has helped. Treatments have changed so much in the last 5-10 years, and even in the past two years that to me skews long-term survival rates. At least my opinion.

As for diagnosis, in reading a lot of stories, it does seem like there isn't a certain way to absolutely diagnosis. Our diagnosis was quick and all at once so I had no idea there was a gray area.

There are no screenings like for breast or prostate and usually no symptoms. So, how do you know? I'm a former smoker, so how do I do a yearly check-up to make sure I don't get it or its caught early enough? A yearly PET scan?

As a group, there are things we can do - request the American Lung Association or ACS to generate and activate a long-term communications plan about raising awareness about lung cancer, the patients and survivors, since they tend to focus on quitting smoking during lung cancer awareness month. We can also ask that they lobby for greater awareness for physicians for uniformed diagnosis guidelines, and to the medical coommunity for an accurate screening device. But this takes a pretty substantial effort and also a pretty cohesive and strong group. That's what happened with AIDs - the community became strongly organized.

I will keep the morphine info in mind if we get to that. Good to know.

[Jackson]

We have questioned from the time my mom was diagnosed if she does in fact have lung cancer. Her lung tumor was very small and is now gone. The majority of her cancer is in her liver and we believe it has something to do with Zocor that she had been taking. She had discomfort in her stomach area for well over a year which doctor's kept saying was acid reflux but none of the medicines seemed to help much. She smoked until the day of her diagnosis so I've often wondered if the doctor jumped to the conclusion of small cell lung cancer. If the discomfort she was experiencing was the cancer growing in her liver, which we believe it was, it doesn't seem to fit that it could be small cell because they say it grows so fast. My mom has had a second and third opinion and they've all agreed on the diagnosis after reviewing her biopsy. Still we wonder.

I also have a comment about AIDS and activism - my mom hasn't been able to get into a clincal trial because her insurance doesn't cover them. I was looking at her policy and they DO cover trials for HIV patients, which there appears to be a law that they have to cover. I find it outrageous that trials for HIV patients are covered but not for cancer patients. I know some states have laws regarding this but not ours. I think getting laws like this passed should be a priority of groups like the ACS because getting people into trials is the key to finding better medicines and a cure. I don't see anything about this when I look at the ACS website.