What is The Difference Between Terminal and Incurable Cancer?

by Jane Ashley

Recently diagnosed patients with Stage IV cancer are sometimes told that they have “incurable” cancer. Stage IV cancer means that the cancer has spread to distant parts of their body.

Incurable Is Not Terminal

But there is a fine line between “incurable” and “terminal.” Every living creature who is born will eventually die. And that is true for humans too.

Many patients believe that they are “terminal” – often thought of as having less than 6 to 12 months to live. These patients ask, “How long am I going to live?”

Related Article: WhatNexters Surviving Terminal Cancer

Statistics look at board population bases, but statistics don’t mean as much when it comes to you, the individual patient. No one can predict which patient will have a complete response to chemotherapy. No one can predict which patient will be allergic to the first line chemotherapy.
So you are unique, and your cancer experience will be unique. Even if the statistics suggest that only 20 percent survival at five years, how would we know that we wouldn’t be one of the survivors? So despite a cancer deemed “incurable,” it is not terminal for every person in the group.

What do cancer survival statistics really mean?

But statistics can be deceptive and tricky to interpret. Statistics are retrospective – i.e., they look backward at a group of patients with a particular kind of cancer and count how many are alive after five years. All deaths are treated the same – whether the death is caused by the cancer or results from another cause in a person with cancer.

Did you know that there is a Cancer Registry? It is maintained by the National Cancer Institute – Division of Cancer Control and Population Sciences. It is called the Surveillance Research Program.

One of their programs is the Surveillance, Epidemiology and End Results (SEER) Program. It the “motherlode” of all cancer statistics in the United States. In this program, they collect data on patient demographics, primary tumor site, tumor morphology (squamous, sarcoma, carcinoma) and stage at diagnosis, first course of treatment, and follow-up for vital status.

So it’s important to know that cancer statistics are five (or more) years old and don’t reflect the latest treatments. For example, none of the statistics now available reflect the emerging advances in immunotherapy and targeted therapies.

Perhaps, we are patients shouldn’t become too concerned about the statistics regarding our particular cancer. Rather we should be concerned about finding a treatment facility that has an excellent reputation and an oncologist that we have confidence in – once we’ve found them, then we should listen to what they say about our particular situation.

Living our lives with Stage IV

So how do we live our lives in the shadow of the Stage IV Mountain? Many of us find that living life one day at a time is the best way to live our lives when there are some shadows looming up ahead.

Related Article: Finding Meaning For Your Life When You're Stage IV

Get the best medical team you can find. Get at least two opinions. You might even consider getting three opinions if the first two opinions are in conflict so that you have a tie-breaker opinion.

Remember that incurable does not mean that it’s not treatable. Some cancers are now treated like chronic diseases; when one treatment stops, they start another treatment.

Play The Hand You Were Dealt

We also need to remember that for many of the solid tumor cancers, treatments include potentially curative surgery, radiation or ablations. These are in addition to chemotherapy in which complete responses occur in 20-25 percent of the patients.

While none of us would choose the diagnoses that we’ve been given, we must play the hand that we’ve been dealt.

I rather liken many cancer diagnoses to the Kenny Rodgers song, “The Gambler.”

You've got to know when to hold 'em
Know when to fold 'em
Know when to walk away
And know when to run
You never count your money
When you're sittin' at the table
There'll be time enough for countin'
When the dealin's done
Every gambler knows
That the secret to survivin
Is knowin' what to throw away
And knowin' what to keep
'Cause every hand's a winner
And every hand's a loser
And the best that you can hope for is to die
in your sleep
And when he finished speakin'
He turned back toward the window
Crushed out his cigarette
And faded off to sleep
And somewhere in the darkness
The gambler he broke even
But in his final words
I found an ace that I could keep.

Despite all the odds, people survive. Patients attain NED status (No Evidence of Disease). They experience durable remissions.
The truth is that until we’ve exhausted all of our treatment options, we aren’t terminal.

Related Article: You Are NED, great! What is It?

So What Next?

Take some deep breaths. Do some research to find top-notch, respected cancer treatment cancers and make some appointments. Most cancers are slow growing, and there is sufficient time to get a couple of opinions about your treatment options.

There are quite a few of us WhatNexters who are living with cancer that’s being treated like a chronic disease. Ask us, and we’ll be glad to tell you, “You won’t know that outcome until you play the hand you’ve been dealt.”

Just remember President Jimmy Carter three years ago.

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