Survivor Guilt? Heck No! Survivor Anger!

I am angry.

Angry that the parents of a seven year old had to beg for two years to get a CT until she was diagnosed stage 4 at age nine.

Angry that a 28 year old woman had to have her child delivered months early in order for her to receive life prolonging treatments. Treatments that did not permit her to see her child through to the age of one.

Angry that a young father will never see his three children graduate to middle school.

Angry that an 87 year old, never smoking woman who survived 3 other cancers now must face her family and tell them that she’s tired. Too tired to deal with further treatment, too tired to argue with them about it.

Survivor guilt

At a recent lung cancer conference, after a program that focused on creating meaning in a post-treatment world, another survivor stood up and talked about her survivor guilt. Survivors guilt (or survivor's guilt; also called survivor syndrome or survivor's syndrome) is a mental condition that people can experience after they survived a life-threatening situation when others might not have.¹

It’s an emotion common to many lung cancer survivors. We put ourselves through a series of difficult treatments including surgery, chemotherapy, and radiation in order to achieve a life expectancy that may be 8 to 24 months longer than we might otherwise enjoy. We do that to spend more time with our family, to watch the youngest child graduate from high school or college, to await the birth of a grandchild, or to walk a daughter down the aisle.

Guilt transformed to anger

As survivors, we cheer for others who walk the same steps we take but watch as they have a very different outcome. We are crushed for them. We know what they went through. We know what it cost them. We mourn with their loved ones and ask ourselves why this worked for me and not them. Why did I live and they die?

After 8 1/2 years of surviving, I have buried more than my share of friends. At this point, I am done with the pain of survivor guilt. I’ve replaced it with survivor anger. I’m angry that so many die who should be enjoying life. Angry that there are so many misconceptions about who gets lung cancer.

I’m angry that any number of thoracic oncologists say that any patient who tells them they didn’t smoke is a liar. I’m angry that their peers don’t challenge them. Angry that an uninformed public believes that all lung cancer patients deserve what they’ve gotten because they smoked. Only one in 15 smokers develop lung cancer. I’ve done the math, that’s less than 7%. Fully 20% of patients diagnosed today did not smoke, another 20% lung quit decades ago. They deserve a doctor who listens to them and believes them when they say they never smoked.

5 year survival rate as a measure

The 5 year, all stages, survival rate for breast cancer is close to 90%. For each death related to breast cancer, we spend $16,189 on research. We spend $12,084 a year for each patient that dies from prostate cancer which has a 99% all stages 5 year survival rate. And the 5 year survival rate for colorectal cancer is 67% with $4,310 research dollars spent per mortality.

The 5 year survival rate for all stages of lung cancer? 18%. So how much money do we spend per death on research for each lung cancer patient? $2,134. Per. Death. That’s an eighth of what we spend on breast cancer, a sixth of what we spend on prostate cancer and less than half of what we spend on colorectal cancer. These numbers reflect only funds spent by the National Cancer Institute and the Congressional Directed Research Programs administered by the Department of Defense and not those private donations we make.

We have early detection tests for breast, prostate, and colorectal cancers. They exist because those research dollars made it possible. Are you angry yet? We’re told it’s because the lungs are not readily accessible like the prostate or the breast. How easily accessible is the colon? It’s time there was some parity in the distribution of the research dollars and until we all get angry and make our voices heard there won’t be. Lung cancer is killing more men than prostate cancer and more women than breast cancer and that will continue until you get mad and speak up.

Turning anger into a positive message

You’ve stayed with me this far so I have a way for you to take your message and your anger and to meet with those decision makers in Congress. The newly formed GO2 Foundation (a marriage between the Addario Lung Cancer Foundation and the Lung Cancer Alliance) is sponsoring a National Advocacy Summit in Washington, DC July 21-23, 2019. If you’ve never done anything like this before then relax because they will train you and set up appointments with your Representatives. There are some travel grants available for those of you who need them.

About that agenda I mentioned...

My agenda:

• Every patient deserves a doctor who believes them and in them.
• An educated public (including doctors and oncologists) who understands that this is not just a disease of tobacco use.
• An educated public that believes that no one deserves lung cancer, tobacco or not.
• An inexpensive, easily administered, early diagnostic test that can be administered annually. Because cancers caught early are infinitely more survivable.

That’s a start. What would you add?