A Breakthrough Study Could Tell Me If I'd Get Cancer — But Did I Want to Know?
I weighed the pros and cons of finding out my likelihood of getting lymphoma
Years ago, I participated in a groundbreaking research study. It wasn't because I had any particular skills, but because I may have special genes — but not the good kind of special.
My family's medical history is clean in some respects. There's little presence of breast cancer, diabetes or heart disease. However, there's an abundance of leukemia and lymphoma. On both sides.
My sister and I are noteworthy for not receiving a blood cancer diagnosis. Everyone else, including some of our extended family, has experienced it in varying degrees of severity.
So when a cancer research center invited my family to participate in a study exploring genetic links to lymphoma, we knew it was the right thing to do. All of us survivors donated blood for examination.
It was disconcerting to think a research lab could find medically relevant information and not tell me. But secretly, I was also a little relieved.
On the invitation, they told us we wouldn't be informed if they found any abnormalities in our genetic coding. That gave me pause. It was disconcerting to think a research lab could find medically relevant information and not tell me. But secretly, I was also a little relieved. That kind of knowledge can open a can of worms.
People sometimes play theoretical games like, if you could find out when you're going to die, would you do it? Even though we know it's not possible, many of us still say 'no.' Having that knowledge might have you living in fear, making "safe" decisions. Finding out my odds of getting a serious disease felt like a similar prospect.
Determining Fate?
I forgot about the study until years later when they sent an update. The research led to a breakthrough, enabling them to identify genetic mutations that indicate a risk of developing lymphoma. I rejoiced at that news, feeling proud to have contributed. But along with this update, they posed a question: if they found I had these anomalies, did I want to be informed?
My mind was reeling. This was a complete departure from the initial agreement. Suddenly, I could find out my risk level for developing lymphoma. Initially I was interested even though I was nervous to get the results.
There are different types of lymphoma and outcomes vary significantly. But in my family, the consequences have been severe. I've watched loved ones go through the grueling treatment process only to have the disease come right back.
How amazing that I could possibly avoid this fate.
Complicated Choice
It seemed too good to be true, but the more I thought about it, the more complicated the choice became. Before saying yes, I needed to consider what the information could actually do for me.
Unlike breast cancer, there's no medical treatment to mitigate risk of lymphoma, so knowing my risk level wouldn't give me a clear course of action. As with many other diseases, strategies for prevention are lifestyle-based — eat healthily, move your body, manage stress and cross your fingers.
Unlike breast cancer, there's no medical treatment to mitigate risk of lymphoma, so knowing my risk level wouldn't give me a clear course of action.
Would I be more proactive in living a healthy life if I knew I had a predisposition to lymphoma? Maybe in the short term, out of panic. But I've found the key to embracing good habits long term is the right motivation. I focus on my desire to live well rather than guilt, shame or fear.
My daily diet is centered around the healthy foods I most enjoy along with a liberal sprinkling of chocolate. As for exercise, I've never been an athlete but I've worked my favorite forms of movement into my weekly schedule, including walking, swimming and Pilates.
To mitigate stress, I've invested considerable time into my mental health, letting go of my people-pleasing ways and several relationships that were no longer serving me. My life has become more peaceful as a result.
All of these things make me feel healthier and more energetic, which is a far better motivator than the daunting prospect of getting sick if you don't do something. So I didn't think finding out my risk factor for lymphoma would help with my lifestyle.
I wondered if knowing my risk level for lymphoma could help with early detection of the disease. In truth, I'm not sure how. My primary care physician already knows my family's predisposition towards blood cancer and examines my lymph nodes carefully at every checkup. I'm also vigilant about early detection. I know the symptoms my family members experienced pre-diagnosis, so if I see those things, I'll go straight to my doctor.
I've always known it's possible I have a heightened risk of blood cancer because of my family. But it's one thing to suspect and quite another to have it confirmed by medical professionals.
Finally, there's the question of how knowing my risk level would affect my psyche. I've always known it's possible I have a heightened risk of blood cancer because of my family. But it's one thing to suspect and quite another to have it confirmed by medical professionals.
The stress of that knowledge would be tough. Suddenly I'd have a serious potential issue I may have to face in the future, with no power to prevent it. I'd just have to let it sit there, an ominous cloud over my life.
Would it give me relief to know I didn't have the genetic mutations? Yes, probably. But I wasn't sure it was worth rolling the dice. I have so much lymphoma and leukemia in my family that the odds of getting the all-clear felt pretty small.
In the end, I realized finding out I had a heightened risk level wouldn't enable me to do anymore to avoid the disease than if I didn't have that information.
My Final Decision
With all those considerations in mind, I weighed the pros and cons of getting my results. In the end, I was concerned the information would affect me too negatively without having enough benefit, so I declined the research center's offer to be informed of any potential issues.
They reached out again to ask me if I was sure, which of course made me feel (irrationally) like they must have bad news to share. I gulped and reaffirmed — I was sure.
I made that decision years ago and I wonder if I'd make the same one today. Now that I'm older, I may be more tempted to find out, but I believe I'd ultimately decline once again. In my 50s I've sadly outlived two of my family members and feel fortunate to have a clean bill of health — at least for now.
Only one thing is certain, and that's that life will always be uncertain.
I found out later that my sister made the opposite call from me. She asked to be informed if any mutations were found. It's been years, and she hasn't heard anything from the research team.
A friend who is two years into a cancer diagnosis feels all medical knowledge is good medical knowledge, and told me she'd have made the same call as my sister. I understand and respect that perspective. I may never know if I made the right call, but I don't regret it.
Only one thing is certain, and that's that life will always be uncertain. In the meantime, I'm doing the only thing I can — making the most of today.
