The Cancer Test Not Taken

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Genetic testing is the norm for cancer patients with familial history. How did I let it slip through the crack?

cartoon drawing of blogger and metastatic breast cancer survivor, Martha Carlson

There are many sayings about procrastination. I should know because procrastination is one of my gifts (or bad habits, if you must). I have my favorite:

“I never put off till tomorrow what I can possibly do the day after.”

― Oscar Wilde

Of course, not everybody looks at procrastination through a rose-colored lens. Benjamin Franklin’s famous quote “Never leave till tomorrow that which you can do today” tends to pop into my mind when I’ve waited to mow the lawn untilit’s too tall, orfailed to reserve a hotel well ahead of time.

While those things are a hassle for sure and usually cost more time and money, they aren’t going to have an outsize effect on my life. But as anyone touched by cancer knows, procrastination is not usually the best path for best care. The same can be said for avoidance and denial, procrastination’s siblings. While we are often reminded to take a breath before making care decisions — good advice for sure — it’s critical to actually return to making that decision in a timely fashion.

This was brought home to me recently when I was talking to a couple of friends and an oncologist about the details of genetic and biomarker testing. As someone with de novo stage 4 breast cancer, whose mom also had breast cancer, and who is a mother of three, I understand better than many that breast cancer doesn’t discriminate. I know that a genetic panel helps to determine risk for other members of my family. It is one of the first things recommended by anyone who talks to cancer patients, including myself, yet I hadn’t done it. How had I let this important step fall to the wayside?

Just before Christmas in 2014, when I received my diagnosis in the midst of planning for an eagerly awaited trip to California for the holidays, I first heard the words “You have cancer.” Within days of returning to Illinois, it got worse with, “You have stage 4 breast cancer.” My team and I decided that what made the most sense for me at the time was to be tested for BRCA1/2 only and forego the larger panel in the interest of getting my treatment started right away.

I am not second guessing that decision. I had and continue to have a terrific response to my first line of treatment. I did so well that about six months into treatment, my team started talking about a lumpectomy and breast radiation. Both had been taken off the table once a biopsy showed breast cancer in my lungs.

I am regretful that I let that decision slide for eight years though, all the time knowing — when I allowed myself to think about it — that my children and other members of my family might benefit from a full genetic panel.

Although my kids are all still in their early 20s, I regret waiting because there was a chance that this information could have provided guidance for screening different or even earlier than what is already advised for them. Because so much remains unknown about why cancer develops, how it behaves, and how to stop it from metastasizing and mutating, the more we know about our genetic risk factors, the better.

When I went to the genetic counselor at my cancer center, she commented that she could see that my oncologist and I talked about a full panel back in 2015 and decided against it at the time. I should have stayed on top of this, but I didn’t. I never received a reminder about it from anyone, either automated or in-person. This seems like something that electronic health records could now help with — I’d rather have received multiple reminders for a flu shot — but I hold myself responsible. Once someone said something to me, I was able to get a referral, a test, and the results within a month. It was easy once Ididn’t let procrastination or avoidance get in the way.

The results, fortunately, indicate that nothing would have changed with my treatment, and nothing would have further increased surveillance efforts for my kids. I am relieved, but what would I have felt if those results were different? I’m going to try not to think about that too much while also urging any of you with cancer to ask your doctor about genetic testing if you haven’t had it done. Your family may thank you.

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