May 26, 2020

The Niche

Knoepfler lab stem cell blog

Why ‘cure’ is a 4-letter word for those with cancer: thoughts from a survivor and researcher

cancer mythCancer is often referred to as the “Big C”. It’s a powerful word with many implications. Another “Big C” word is “Cure”.

I believe “Cure” is also a loaded word.

I am a cancer survivor and cancer scientist. You can read more about my experience here.

Recently I got some more good news on the cancer front.

Am I cured?

Not that I know of, but anyway I’m not a big fan of the word “cure” when it comes to cancer.

I consider it a 4-letter word in fact.

About 32 months ago I was having surgery for a very serious prostate cancer….right across the street literally from my lab where as a professor and researcher I study cancer.

I remember waking up groggily from the cancer surgery.

I felt sort of like being in the Twilight Zone still under the fading effects of anesthesia, but it didn’t take long for the word “cancer” to come into my head and to remember why I was there.

Somehow the word “cure” was not on my mind. I was not feeling hopeful. A few weeks later when I saw the pathology report on the tumor, which was a mixed bag of news but mostly discouraging, the new reality seemed to sink in further.

But time marches on….

32 days, 32 weeks, and now about 32 months post-op…I can’t believe so much water has passed under the bridge.

And reality can and does change. In my case, things are now feeling far better than I ever imagined during those dreadful months after I was diagnosed, had surgery, and was recovering.

Cancer is less on my mind these days, but still there.

The recovery goes on. My doctor makes of point of saying I’m in remission. He doesn’t use the word “Cure” because he knows and I know that prostate cancer can come back many years later.

Still helping my sense of recovery is that I’m still in long-term remission as my latest PSA test, which I got the results of today, was undetectable.

For recovering prostate cancer patients, “undetectable” or “<0.01ng/ml” on a PSA test are more precious than jewels.

As I’ve said in past posts, there are some good things about having had cancer including a new appreciation for life and acceptance of mortality, but often having had cancer just plain sucks.

There are days or even weeks when it is on my mind more, although thankfully gradually less so over time.

More often than not when I start thinking about cancer again and it’s weighing on my mind, it is because I’m due for one of my now thrice yearly PSA tests to see if I’m still in remission.

After more than 2 1/2 years I’m now in long-term remission, which is a good thing of course (knock on wood). But as you can imagine, as these PSA tests approach and then especially as I’m awaiting the results, cancer is more on my mind. It also has come to my mind as some of my friends and family have had their own battle’s cancer too during the last 2 1/2 years. Some far worse than mine.

Overall, I feel positive and optimistic, but of course I know the cancer could come back. Every test I get that shows no sign of cancer decreases the odds of a recurrence, but odds don’t matter if you are the one who gets the bad luck.

It was the same way before my initial diagnosis.

After a mildly abnormal PSA test, they told me “It is exceptionally rare for someone in their early 40s to have prostate cancer. You almost certainly don’t have it, but the only way to know absolutely for sure is with a biopsy.”

After the biopsy they were shocked that I did indeed have prostate cancer at age 42.

There’s probably a 1 in 100,000 chance of having a serious prostate cancer at age 42, but for me the odds were 100%.

It was sort of like the evil twin brother of the winning the lottery.

Odds are tricky things.

Having had a major cancer is not easy to put it mildly and in some ways it doesn’t get a whole lot easier over time for me.

In part it doesn’t get easier for me because I know cancer all too well as I’ve been studying it half my life. Perhaps as a cancer biologist I know too much for my own good.

Also, it may be harder because I believe that in most cancer cases (other than skin cancer) there is no such as a “cure” in the strictest sense of the word.

Scientists are realizing that it is just not possible in most cases to remove every single last one of the damned cancer cells from the human body.

Why?

Cancer cells are fidgety, hyperactive little things that tend to literally want to take walks around your body and are uniquely equipped to do so…so even in an apparently “contained” tumor, I believe that most often by the time of diagnosis and surgery or other treatment, some cancer cells have “walked off” to other parts of the body.

As fate would have it, these “walkers” also tend to be the most dangerous cancer cells.

Thus, the word “cure” becomes complicated.

On the other hand, some patients are for all practical purposes cured anyway because any remaining cancer cells that might have escaped either eventually die off or remain in a harmless mode until the patient themselves die of some other cause.

When doctors tell patients things like “you are cured!” or “there is no sign of the cancer!” or “there is no cancer left in your body!”, those doctors are most often walking a thin line between reality and hope.

What I like better than a doctor saying definitively that someone is cured of cancer is what my first cancer doctor told me when I met him the day I was diagnosed. He said after the surgery:

“assume you are cured unless proven otherwise”.

There is a wisdom and honesty in that statement that I appreciate. I am continuing to hope more than assume I’ve been cured.