Cancer patients refer to their “cancerversaries”—the anniversary of their diagnosis—as a time of both elation and anxiety. They’ve made it another year, which is cause for celebration. But the anniversary usually comes with tests to check the status of their cancer.
Ideally, the report is NSD—no sign of disease. Still, patients worry for weeks before, concerned that cancer has returned. Otherwise, why would doctors be testing?
A mammogram found my initial cancer early, and there is no arguing the benefit there. It was a fast-growing triple-negative tumor, so I was glad to get it taken out with a lumpectomy, then chemo and radiation. My prognosis was great because of early detection. The first year after finishing treatment, I was given a mammogram and blood tests every three months. Then every six months, then once a year; after five years it just became part of my yearly physical.
Those initial tests were stressful. They felt good afterward, but beforehand, I lost sleep and had slight panic attacks and digestive upsets. I am glad I passed the tests and equally glad they are over, so I no longer worry about cancer. It could come back; I know that. But it is no longer at the front of my mind.
Then, nine years after my first diagnosis, a mammogram came back with an unwelcome surprise: I had a small triple-negativve breast cancer again. Again, my prognosis was excellent because of early detection. I had a double mastectomy so now I don’t even need mammograms, but I encourage them for others. I occasionally have weird pains and momentarily jump to the conclusion that cancer has returned. The pains go away. If they ever stay, I will go to a doctor, but only for pain relief.
If It’s Not One Disease, It’s Another
Despite my self-perception as a healthy person, I also have emphysema, which left me with 50 percent lung capacity for decades. Still, I hiked mountains and walked at least three miles most days.
After I was exposed to toxins after a wildfire, I went back to the pulmonologist for tests, just out of curiosity. I was down to 42 percent. The morning before the test I had done the two-mile walk around a local lake. I walked as fast as I could, to prove to the doc that I was in good shape. He didn’t care how long it took me. “Patients with numbers like these,” he said, pointing to my chart, “can’t walk two miles, no matter how fast.” Nor, he said, did they have my healthy skin color.
His prescription: “Keep doing what you’re doing.”
The tests showed one thing. My body showed something different.
That was five years ago, and since then I have been fine, but I could tell I was losing some of my ability to walk and talk at the same time, especially uphill. I got slower, but I persevered. I needed more breaks, so I took them.
At the insistence of a doctor I have since fired, I went back to the pulmonologist for more tests. I was reluctant. I knew my lungs were bad, but I wasn’t letting that stop me. Did I really need a number? And, if that number was lower than in the past, was it going to make me anxious and interfere with my exercise? Would it make me see myself as weaker than I felt?
I got the blasted test and, sure enough, I was now down to 36 percent lung function. I had slightly more than a third of a lung. The pulmonologist and I talked again. I told him my walks were now about a mile and a half. He wrote that down, then looked at me. “You just don’t match your numbers.” Clearly, he said, I had significantly reduced lung function, but what I did with what I had was highly efficient.
Again, the tests did not match how my body worked.
I asked the doc if I could have been born like this, so my body never knew how full lung capacity felt. “I can’t tell, but you’ve had this a long, long time.”
After that, I was a little hesitant on my walks. Given how little air I had, did I want to overexert myself? Have an attack on the pretty tree-lined trail? This was counter to the attitude I had most of my life—just do what my body says I can, and sometimes more. Now, I was being intimidated by tests, paying attention to the numbers, not to the reality before me.
Personal Perspectives Essential Reads
The pulmonologist told me I could come back for tests again, but until I needed oxygen, he had no treatment. I was doing fine on my own. Way better than expected, in fact.
The specter of walking around with an oxygen machine gets me out to exercise when I would much rather settle in with a book. I go to an osteopath for manipulations and I swear she is magic. She works to loosen the muscles around my lungs to give me more space to breathe. When I leave, I feel like a tire that’s had air pumped in. Ready to roll. I do yoga every morning, focusing on breathing and stretching.
It’s been three months since that last lung test, and I’ve stopped stressing about it, but it’s still in my mind. Should I do so much? Will I overexert myself? If all I got from the test was anxiety, it’s clearly not a benefit to me.
Why “No More Tests After 75” May Be My Path Forward
Ten years ago, Ezekiel Emanual wrote a controversial piece for The Atlantic, titled “Why I Hope to Die at 75.” He was 55 at the time, and he didn’t really intend to actually die in 20 years—his premise was that we do too much to add length to our lives and we forget the importance of the quality of the extra years. He planned to forgo invasive testing and medical procedures when he got to 75, not wanting to force an old body to keep going when it is “faltering and declining.”
Individuals should, of course, consult with their doctor and make the decision that feels right for them. But for me, Emanual’s perspective makes a lot of sense. I’m past 75, and I am still doing interventions that make sense to me. I had a biopsy of a spot on my nose, which was basal cell cancer, so I am having that removed. I keep up with dental tests and eye exams. And I still get vaccinated. But I’ve aged out of colonoscopies and pap smears. And I have no need for mammograms.
I have enough to worry about than diseases I may or may not have and, if I did, may or may not be serious and, if they are, may or may not kill me. Enough is enough. And that I have had.