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I have been having some very serious thoughts this morning and decided there is an issue that needs to be addressed. I will be on my soap box again for a while so please bear with me.

Because of the story that I am writing I have been reliving many things and that has brought me both laughter and pain. My emotions have been so raw that I have spent less time reading or posting here for a few days. To be quite honest there are times that even the good news causes me problems. I'm sure that anyone else who has lost someone can understand that.

Most of the time I have spent reading the posts has been in the laughter forum. I seemed to be needing that for a while to boost my spirits. Last night I started reading the forum on activisim. That has left me with some serious thoughts and I want to share them here.

We have all voiced the desire to change the attitude toward lung cancer and try to get more attention to the plight of the ones affected. That has proven to be a very hard thing to do. I believe I know the reason why. FEAR!

When someone stumbles onto this board it is because in some way they have been affected by lung cancer. Lung cancer is not a subject that any one would research unless they had cause. Personal reasons. Most people today will never admit or even realize that they are superstitious. The truth is everyone is in some way or another. The fear of lung cancer is so strong that everyone is afraid to be associated with it in any way until they are forced to. There is the hidden feeling that to become involved is tempting fate. Lung cancer is so frightening to people that they are actually afraid that if they show interest it will strike them in some way.

The stigma that goes with lung cancer to many is a safety hold. If they don't smoke they don't feel the need to fear it. That as you know causes many people to be caught off guard and go without being diagnosed until the disease is usually more advanced. The fear of lung cancer keeps many ignoring symptoms until they are impossible to ignore any longer.

Fear is the greatest enemy a person with lung cancer or their loved ones has to deal with. Because of the attitude toward lung cancer it is looked at as a death sentence. That attitude is wide spread. Most doctors treat lung cancer with the idea that they are buying time or quality of life. Very few are optomistic that it will be cured. That attitude is often expressed by giving a person a time limit. No matter how much is learned about this disease that attitude has not changed. Right here on this board we see many people who have won the battle and many more who have lived many years and are still fighting. Still every time I speak to someone about lung cancer and Johnny's death I get the same response. I am always told "you should have known what would happen. A person with lung cancer is not going to live more than a year." That statement shows how uninfomed the public is about this disease. Some way that has to be changed. Until it is the battle will always be a battle against not only the disease but fear.

I not only saw but was a part of what that fear can do to a person. Johnny was progressing better than anyone had dreamed or expected. Even his doctors could not believe how well he was doing. Not only had his nodules shrunk by 50% but he gained weight and was stronger and more positive than he had been in years. It took one remark that undermined his determination to plant the seed of doubt. That doubt grew to fear that in the end cost him his life. The very people that he trusted his life to destroyed his hope. That has to change or there will never be recognition of the plight of the people with lung cancer. If the people in charge of treating a person have that attitude how can we ever hope for anyone else to see it differently?

The recent flu epidemic made headlines tho the number of people who died from it was not even a fraction of those who are lost every year to lung cancer. The reason for that is simple. People believe that it can be cured and not only seek treatment but know that everything that is done for them is with the goal of a cure in mind. They have hope! They may fear it but that fear is balanced by the attitude of not only the public but those in the medical field.

In most cases the general public have a sadistic attitude. They media feeds us violence and we read it with relish because it is happening to someone else. We see the things that make headlines as problems that most of us will never have so it is easy to listen and read about them.

Everyone knows that each and everyone of us is vulnerable to cancer. To reach the public and make them aware we have to remove the element of fear. Stories of survival and treatments that are working have to be made public knowledge. The only way that anyone will be willing to look at lung cancer without shying away is when they realize that there is hope. Until we can find a way to make that happen the stigma will remain and the help we seek for research and early detection will be nearly impossible to obtain.

I firmly believe that the place to start is with the doctors who treat lung cancer. If they have no real hope for a cure how can anyone else?

Every means to fight it should be given to a person. That means the latest treatment, alternate treatments(which most doctors tend to ignore), and above all positive attitude and hope. So I say next time a doctor gives some one a time limit tell them that you are not a statisic Tell him that you wish that instead of looking at the statistics he would look at more ways to make those statistics obsolete. Statistics are numbers we are people. That is the difference and it is what makes all of the difference in the fight for life.

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You really hit the nail on the head. Maybe we should all print your letter and take it to our doctors. I too almost gave up because of a remark. I had done well after surgery but went to my primary care physician for a totally unrelated matter. While there I mentioned to him that I had received a reminder from the hospital that I was overdue for my mammogram. He looked me straight in the eye and said "Bonnie, you have lung cancer". I was devasted. Shorrtly thereafter I had an appointment with my pulmonary doc and let him know how devasted I was. He said "you get that mammogram and if we find something we will treat it too". I call that doc my upper. I have had 2 mammograms since then. We MUST make docs realize the damage their remarks can be.

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Wow -- If only people knew how much their comments can affect someone's attitude, and how much damage they can do! Lilyjohn, I'm glad you wrote what you did, and BLT, I can't believe how insensitive your doctor was in that comment about the mammogram, too. Healers should never, never be that way!!!

It's so true that people try to distance themselves from scary things (like lung cancer). In my work, we had a big problem raising money for childhood cancer because no one wanted to think about it -- it was just too awful to think about, so lots of people turned the other way. About 6 years ago, I started a program using artwork done by kids with cancer to create holiday cards, note cards, shirts, etc. The artwork is bright and cheerful and happy or beautiful, so people are drawn in. A photo of the child and a quote from him or her and some info on their diagnosis and status is on the BACK of the card. Kids with cancer become a little less scary, and people find it easier to pay attention. It has really helped. In childhood cancer, though, we DON'T have to deal with people "blaming" the patient for the cancer!!! Still, I'm betting we can find ways to "humanize" lung cancer patients, to "help" people become less judgemental, and like you said, let people know there IS hope, so that it's less scary for them to pay attention.

People may get tired of my "childhood cancer stuff," and I apologize in advance, if so -- It's just where I've been for over 6 years now in my work. But here's one thing I hope we can all take courage from. In the mid-1950s, hardly any child ever survived any kind of cancer. Now -- after a lot of reseasrch -- there are some kinds of childhood cancer that can be cured in over 90% of kids, and almost every kind of cancer kids get has seen very dramatic progress. Even in the 6.5 years I've been there, I've seen the statistics improve. (We all know that people are not statistics, though, so for those who die of even the "easier to cure" cancers, it's still a tragedy! It's not enough until 100% are cured or better yet until cancer is prevented altogether.)

Anyway, research DOES make progress... not as fast as we'd like, but it does give hope and life to so many. Think of all those on this board right now who are alive today because of new things found in research just in the last few years -- and think of how much less a lot of people suffer going through chemo today than even 10 years ago, due to better drugs. It's not going fast enough, and we need to keep pushing, but there really IS hope, even for the types of lung cancer that hit the hardest. There is hope for every patient here. And aside from research, we all know that miracles do happen!

All of you who are participating in clinical trials, you are helping research progress AND most likely getting the best possible treatment. Clinical trials are not for everyone, and there isn't a trial for everyone who wants one... But all of us owe a big debt to those who are participating in trials they qualify for. Of course, every patient has to weigh all the factors before deciding what's best for themselves, which is what really matters.

Off my soapbox now... I just wanted to echo that yes, FEAR is a big factor -- or rather a big obstacle -- in the fight against lung cancer, both for the patients and their families AND for the general public who need to know more and respect patients more. I am hoping that there are many in medicine right now who see this disease as a big challenge and are up to the search for new cures.

Hang in there, everyone. I'm so glad this board is here for venting and support.


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