Choosing Not to Know

Nearly two years ago, I learned that my father had stage 4 lung cancer.

Finding out was a shock to say the least. Of my two parents, my father had always been the healthier one. He was also a lifelong non-smoker who avoided being around smokey environments.

How was it possible that he had cancer?

The answer surprised me. It turns out that my father—like a lot of people of East Asian descent—has a gene that makes him more susceptible to lung cancer. Upon learning this, his oncologist asked me: Was I interested in getting tested?

I told her that I wanted to think about it.

A parent’s cancer diagnosis never comes at a good time, but the situation was made more complicated by a number of professional and personal things that were going on at the time. It also was taking more time than I thought it would to sink in that my father was dying.

As I mentioned in the past, ours is a complicated relationship. He did not play a large role in my upbringing. However, there is no denying that I am his daughter. I look so much like him that many have commented he could not deny me if he wanted to. (We even share a similar gait.) I also inherited his tendency towards depression, so it is very possible I inherited this gene as well.

When I returned home, I spent a lot of time researching lung cancer and its genetic link. It didn’t look good. Amongst other things I learned that having a first-degree family member (parent, sibling or child) with lung cancer roughly doubles the risk of developing lung cancer. This risk is more for women and less for men and stronger in nonsmokers than smokers. Having a second-degree relative (an aunt, uncle, niece or nephew) with lung cancer raises your risk by around 30 percent. 

Oh wow. Not only did my father have lung cancer, but both my maternal grandfather and uncle died of lung cancer as well. Granted, the latter were both heavy smokers, and I thought I was safe since I have never smoked an entire cigarette in my life. (I was aware that non-smokers could develop cancer. I remember when Dana Reeves—the widow of actor/activist Christopher Reeves—died. She was a lifelong non-smoker, but some article suggested that her years as a jazz singer singing at smokey clubs may have played a role.)

Confronted with the information, I decided to wait awhile and mull over my options.

Now, several months later, I have decided I am not going to get tested or at least not for now. This has taken some of my friends and even some family members aback. Many want to know: How can I not want to know? If I had HIV, wouldn’t I want to know?

The answer to the latter question is, of course. In that case, I could not think of not knowing. Not only would it be incredibly selfish for me not to know and risk passing it on to someone else, but I am aware that the earlier the treatment, the better. New drug treatments have made it possible for people with HIV to lead long, relatively normal lives.

However, this is not the case with those of us with this gene. At least for now, there are no drugs to turn off this gene or make me more resistant to cancer. Also, even if I have the gene, it is not an automatic that I will develop lung cancer.

Some who are aware of my situation asked me what I thought of Angelina Jolie’s decision to have a preventative mastectomy when she discovered she had the gene that made it far more likely she would develop breast and ovarian cancer. My answer surprised them: I believe that Jolie made the best decision for her and her situation and had I been her shoes, I may very well have done the same thing.

However, I cannot have my lungs prophylactically removed. I have to have them to survive.

I also thought about my own daughter. While I intend to tell her when she is much older about Grandpa’s genes so she can have the option to get tested if she wants to, I do not want to burden her with thinking that her mom might die of lung cancer. Granted, I might. I know that one day I will die of something, but I wonder if the stress of knowing I am a carrier would contribute to the possibility of developing it. Lest anyone thing I am a loon, the effects of stress on health have been pretty well-documented.

In the meantime, I do intend to get regular screenings. I also will continue taking care of myself by eating right, exercising, not smoking, and avoiding unnecessary stress. As a worrier by nature, I truly believe that knowing I am a carrier would contribute to my stress levels, even if I never went on to develop lung cancer.

I also remain hopeful that new advances in science and medical research will continue. My father is still alive and in very good health thanks to a medicine that is specifically for people whose lung cancer is the result of genetics. So far, he has managed to avoid chemo and radiation. He also practices marital arts and meditates which his doctor encourages and believes helps him.

Recently, I asked him if he would have gotten the test had he known he might have been a carrier. His answer? No, he would not have. He would have gotten regular screenings, but he would not have wanted to know, interestingly, for many of the reasons I cited.

We may not always see eye-to-eye on a lot of things, but on this one, we are in total agreement.

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Ed: B. Bemel