The Problem With the Phrase ‘Cancer-Free’

Dear friends and family,

I need to shoot straight with you on something very important about my prostate cancer.

Yes, I am in remission. And yes, I have registered a perfect PSA for four years. When you hear that, you may declare me “cancer-free.” And yes, that’s kind of true.

But I’m not really “free” of this beastly disease. I merely wanted to protect you from the stark truth that cancer is often a career criminal and not a one-time offender. For many survivors such as myself, it is our constant companion.

Good for now, but later?

In 2014, I was diagnosed with Stage 3 prostate cancer. I had surgery that year and within six months the cancer was back. Radiation and hormone therapies followed and put the cancer in check – at least temporarily.

At my last PSA reading, the urology nurse said, “Congratulations, Mr. Cooper, your PSA looks good again. There is nothing to worry about right now. See you in six months for your next test.”

I asked her if he could extend my test to every year, but she demurred.

“I think we’re going to have to watch you closely,” she said, adding matter-of-factly, “We’ll be seeing you for the rest of your life.” I appreciated her honesty, but it sounded like a life sentence without parole!

The whole truth and nothing but….

PSA readings after surgery are the bellwether for potential recurrence for prostate cancer. When someone like me gets a good reading, we are not exactly “free” of the cancer. We can claim, however, “there is no current evidence of disease.”

The problem is, that’s a mouthful to say and it begs explanation. And I’m so exhausted by advanced cancer hanging over my head, I’m just not up to the task.

No, I’m not at death’s door, but I’m not the answer man, either. My number one goal is enjoying the spontaneous moment, squeezing a little joy out of this disease, not answering endless Facebook queries. (Sorry if that sounds a little mean-spirited!)

Cancer: ‘Nagging and worrisome’!

At every turn, cancer is persistent, nagging and worrisome to those of us who fight it. Complications arise, such as weakened immune systems and illnesses associated with that. Some of us end up getting secondary cancers. Chemotherapy can bring painful neuropathy in hands and feet. Cancer is a thorn in our sides.

Truly, there’s absolutely nothing “free” about cancer. It’s costly not only in a financial sense, but emotionally as well. It’s a dark shadow that hangs over our horizon.

‘Treatable’ is often more accurate

Please don’t assume that “free” means “cured.”Many cancer survivors cannot make that claim. It’s best to say that our cancer is “treatable.” And, further, that treatment can often be never-ending.

I know many cancer survivors who choose not to make a big deal of their illness. They are content to get a Facebook post or tweet congratulating them on being “cancer-free” following a scan or test. There is nothing wrong with that, and there is something very gratifying to be supported during our journey.

But, please, friends and family, don’t assume anything. Let the one living with cancer define or clarify our status in our own good time. Pretty please, don’t jump to any conclusions.

In it for the long haul

I know this will leave you hanging and uncertain about the full scope of your loved one’s health and well-being. But with cancer, there is good reason to use the word “journey” because that’s what it is after all. It’s not a jog around the block. You will earn your stripes as a true-blue supporter if you sign on for the long haul.

You will earn extra points by calming the survivor’s anxieties during the COVID-19 pandemic, even though hope and vaccinations are around the corner. You can still bring soup, but be sure to leave it at their doorstep.

With cancer, the right words count at the right time. So do friendship, love and understanding. Thanks for all you do and all that you are during this journey fraught full of uncertainty. We’re counting on you!

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