Living with and without cancer

In remission? Cancer-free? Evidence of no disease? Or cured? No one really knows exactly what to call it.

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As you may recall from my previous updates, I was diagnosed with prostate cancer in the fall of 2021, and underwent a one-and-done, minimally invasive internal radiation treatment a little over a year ago.

I wrote that I was going to be fine because it was caught very early, and I emphasized why PSA-testing — a simple blood test annually, measuring prostate-specific antigen and if it is elevated — is important for everyone with a prostate. That should begin at age 45, and at 40 if you’re Black, as urged by the Prostate Cancer Foundation.

I later discussed my treatment, and a few months after my treatment, I wrote about how my PSA plummeted, making my oncologist very happy. He used the word “success” to describe the treatment. Before treatment, he said you will be “cured,” using the future tense, as the treatment has been shown to be recurrence-free in 93% of people after 15 years.

But am I “cured,” and when did that —or when will that — happen? It’s not so simple.

Since then, I’ve been tested again, and all is good, and the doctors are all happy. But you always worry about minor fluctuations, or why your numbers aren’t as low as someone else’s. Or you worry about…a hundred other things. And while the treatment has a 93% success rate, there are stories everywhere of cancer recurrence, and, of course, 93% isn’t 100%. So, even as doctors reassure you, you factor that into your expectations.

Every cancer is different, and prostate cancer, which is, in most cases, very slow-growing, has its own trajectory, which may or may not have similarities to other types of cancer. In cases like mine, in which the cancer was considered localized, there’s still always a chance that microscopic cancer cells got outside the prostate, and it could be quite a few years before they are detected and cancer is considered having recurred. There’s also a chance that not all of the cancer is killed inside the prostate, and while it probably would recur sooner rather than later, it too could take a while.

Doctors seem to agree on what being “in remission” is — meaning the cancer is not advancing and is dying — but they differ greatly on when (or if ever) to declare you are “cancer-free” or “cured.” I know many of you know this first hand, having dealt with many variations of this often-brutal disease yourselves or with loved ones.

It was in a visit with my urologist recently, who monitors for side effects from treatment (and thankfully I have none), that the murkiness of it all dawned on me. He made a matter-of-fact statement about the way PSA numbers, after treatment, can bounce up and down, or plummet and level off. It wasn’t the point he was actually making that stuck with me. It was his using the phrase, “in people like you with prostate cancer…”

So, even as my oncologist had used the word “cured” in the future tense before treatment, and the word “success” after treatment, my urologist was saying I was living “with prostate cancer,” even if it was showing all signs of dramatic “remission.” This is presumably because he, like every other doctor, actually doesn’t know for sure at this point if there is any cancer in my body.

The particular radiation treatment I had, low-dose brachytherapy, involves implanting radioactive seeds — 66 in my case — inside the prostate via needles (while under general anesthesia). The internal radiation does its job over a period of many months, with the greatest impact happening in the first few months.

Just because a lot of cancer is killed and PSA plummets in those early months, it doesn’t mean the radiation isn’t still working on it for many more months. And even after a year, when the radiation has completely decayed, the impact of the radiation — the dying off of cancer cells and regenerating of new cells — continues.

So, it’s hard to say whether you’re living with cancer (albeit that it is dying) or are cancer-free. Only time will tell, I guess, but it is an odd state in which even medical professionals disagree. With other cancers there may be more agreement, as success might be measured by a tumor being fully removed, and CT scans, MRIs or other tests showing no evidence of cancer.

But when you’re going by a blood test for PSA — and only getting further tests if PSA continues to rise again over a long period of time — it’s really impossible to know early on. As my urologist said, PSA bounces up and down for a variety of reasons — even from riding a bike — so you’re not supposed to fret unless it keeps going up again and again.

I’d committed myself to chronicling my experience, back when I first wrote about being diagnosed. And I know everyone’s experience with cancer is unique and obviously is dependent on the type of cancer someone has encountered as well. Many of you or people in your lives surely have had varied experiences, many of which have sadly been painful, and ultimately devastating.

So even without that 100% certainty for the future — which will likely never come — I’m thankful to be healthy, and with everything going in the right direction. I’m not complaining about the uncertainty as much as taking note that when you’ve had cancer you’re probably still living with it for a long time — at least psychically, if not physically — even if you’ve been lucky enough to beat it.