Plea from a dying woman: Get a second opinion

[dadstimeon]

http://www.sfgate.com/cgi-bin/article.c ... NSIA01.DTL

Plea from a dying woman: Get a second opinion

Sandy Phillips Britt

Sunday, February 4, 2007

We have all seen the movies about tragic, terminally ill young women or men poignantly living the last few years of their life, some with abandon, most in struggle. Films like "Dying Young" or "Love Story" come to mind. They are usually romantic and touching.

It's hard even to say this, but I am living this life. I am a movie of the week. Two-and-a-half years ago, when I was 46, I was diagnosed with the most advanced stage of lung cancer. I've never smoked a day in my life. In fact, I hate smoking almost to a fanatical degree. The worst part is I am going to die because a pulmonologist did not know how to read a chest X-ray and did not find me worthy of follow-up. When I took my abnormal chest X-ray to my doctor in 2001, my cancer was in the beginning stages and completely operable. I could have been saved. Now, 5 1/2 years later the cancer has spread to both my lungs, and it is incurable. Oh, did I mention that my father and 42-year-old brother also died of lung cancer?

Now, I'm not Peter Jennings or Dana Reeve, so who really cares? I'm just a 48-year-old woman with a husband and 82-year-old mother who love her, a huge circle of friends, a beautiful home and a beautiful life. All this is being taken away from me because someone made a mistake. I have to live with that knowledge every day. And with the stigma of my disease. Lung cancer is an unsympathetic cancer because most people who get it smoked. Isn't it true that the 175,000 people that are diagnosed with lung cancer every year brought it on themselves?

Breast and colon cancer are much more sympathetic -- what did the victims of these diseases do to deserve them? Boy, it makes us feel so much better when we can point blame. In fact, research money is much more plentiful for sympathetic diseases. Lung cancer has always been the cancer research stepchild, even though every year it kills as many people as live in Modesto.

Well, I did nothing to deserve lung cancer. I'm among the 15 percent of lung cancer patients who never smoked. According to City of Hope, nonsmoking women are a faster growing population of lung cancer victims than anyone realizes. I did everything you're supposed to do to ward off disease and death. I ate right, exercised, got plenty of sleep, wore sunscreen, got yearly mammograms, locked my car doors and always wore my seat belt.

I believe the reason I was ignored when I asked the pulmonologist to look for lung cancer in my chest X-ray is because I didn't fit the profile. I'm not a 65-year-old man who smoked for 20-plus years. Only recently has a genetic link to inherited lung cancer been proved, and it still is not widely accepted by medical professionals. You would think, however, that having two people in one family already dead from the disease would cause some kind of caution.

You might wonder: How could I go more than three years with lung cancer and not know it? It is because I had absolutely no symptoms until I started coughing in July 2004. One reason lung cancer kills so many people is that symptoms don't appear until it is too late.

The first oncologist I saw told me she was not going to treat me with chemotherapy until I got sick, because she didn't want to rob me of the last remaining months of my life in which I would feel good. She told me I would probably live nine months, maybe a year-and-a-half, because I am young. If I had listened to her, I would be dead. Instead I got five other "second" opinions from the top lung cancer specialists in California.

This is the best thing I ever did. Accepting the pulmonologist's opinion in 2001 that there was nothing wrong with me, even with an abnormal chest X-ray and a family history of lung cancer, was the worst thing I ever did.

Now I am a major believer in second opinions. This disease will kill me eventually, but for two years, because of what I learned, I have stayed healthy and alive. I benefited from a new drug, and lived a normal life for a year.

And what a year that was. It bought me precious time. Time to travel, time to make my estate plans, time to spend with family and friends. Time to find another treatment that bought me yet more time. After the first drug stopped working, a clinical trial with another drug bought me several more months. Now that drug has stopped working, and I am out of options. But don't let anyone tell you that you are out of options until you seek several opinions.

If I can impart just one message it is this: When it comes to your life, do not take one person's word for it, no matter how nice and professional they might seem. Even if you need to go outside your HMO or whatever health program you are in, don't hesitate to see top specialists. Many people resist second opinions because they have to pay for them. This is insane when your life is at stake. Paying $600 to $700 is nothing compared with your life. Borrow money if you have to. Just go. Use every connection you have to get an appointment. Don't take no for an answer.

Always get a second, third, fourth or fifth opinion -- however many it takes to convince you. And if you do get bad news, take your show on the road again and seek out the best people in the field to guide you.

Assert yourself and tell your family and friends to do the same -- and to demand a fair level of funding for lung cancer research, the No. 1 cancer killer. Unfortunately at this point, no one survives Stage IV lung cancer indefinitely. Until lung cancer starts being treated as a disease worthy of sympathy and support, instead of as a punishment, this will remain true. As those of us active in the Lung Cancer Alliance, the nation's only nonprofit organization dedicated solely to support and advocacy for people living with and at risk for the disease, say, "No more excuses. No more lung cancer."

Too late for me, but maybe not for you or someone you love.

Sandy Phillips Britt, who lives in Alameda, is a national spokeswoman for the Lung Cancer Alliance and a member of the organization's California steering committee. Contact us at insight@sfchronicle.com.

[Kasey]

Many know that I am a fervernt advocate of more than one opinion. It took 4 until I heard these words........."I think I can help you". And many times the second opinions don't cost as much as you might believe.

Thanks for this important post, Rich.

Kasey

[Ry]

Wow. Thanks for posting that--

[Jyoung20]

Another WOW!!!!!

Very Powerful Message!!

Thank you!

Jamie

[Geri]

She's said it all and said it very well.

[joanie55]

Your post was great. I justhave to disagree with one aspect. I really don't think I deserve Lung Cancer because I did start to smoke as a child (17 or so). Off and on until I realized that if I didn't stop it would kill me. At that time they were still saying "doctors prefer camel".

I never worked so hard at anytime. When I stopped smoking I was convinced that I had saved my life and sent another 20 years happily along my way, stopping whoever I could from smoking.

Smoking is not the only cause of LC.

Totally believe in second, third, and fifth opinions, but if you are addicted by BIG TOBACACCo, I think we should be going after them. What can we do on that front to save more lives. I say we wipe them out!!!!

Joan

[DanaBrooke]

Joan- RIGHT ON- I was thinking the same thing! (i guess it's true I do think like my mom)

GREAT post BUT just because someone made a mistake of smoking- does NOT mean they deserve this horrible disease! Watching my mom go through this each day. The changes and the pain she has to go through as well as her family and friends too watch... I WOULD NOT WISH THIS DISEASE ON MY WORST ENEMY- and once again NOBODY DESERVES THIS. I wish everyone on this site the best of luck. I have been following a lot of your stories and have to say this has changed my life. I admire each and everyone of you.

[dadstimeon]

Joan/Dena,

I just want to make it perfectly clear that is not my stance on lung cancer. I don't care who, what, where and why someone gets lung cancer--no one and I repeat no one deserves lung cancer. It does not make me feel any better that I never smoked in my entire life and have lung cancer. Unfortunately the blame card will always be played weather it be lung cancer, aids, alcohol, drugs etc. I knew long before I was diagnosed that smoking was not the only way to get lung cancer. I wear a button all the time that says no one deserves lung cancer. If people ask me about it I explain it the best way I know how to the best of my knowledge. I thought the article was well written and there are parts of it I don't agree with either. People are going to believe what they want and I think It's up to each and everyone of us in the lung cancer community to step up to the plate and try to change the many stigmas attached to lung cancer.

Rich

[DanaBrooke]

Rich- You are right! I guess you can say this is just so frustrating- I promise each and everyone of you on this site- I will do whatever it takes in my lifetime to try to bring awareness to this horrible disease. Thank you all for being so strong. Thank you rich for making that clear- I need to get myself a button like that )