After The Merry-Go-Round Stops
“Why do I say have cancer or I that am a cancer survivor after being told I am cancer free”?
I hear that question often from patients, family members and friends. The question really got me thinking the other day. And speaking as someone who has had prostate cancer surgery, and salvage radiation several years later, I know that currently my PSA is undetectable. So why do I and so many others speak of cancer in the present?
The medical merry-go-round
It is a good guess that most of you reading this article occasionally find some weekly or daily reminder that the life you knew prior to diagnosis and treatment has been changed forever.
I often compare cancer treatment to taking a ride on a merry-go-round. Standing outside you can hear the music and see a swirl of flashing lights, and as horses go up and down and folks reach out to catch the prized brass ring for a free ride.
For a moment let enter the world of the medical merry-go-round.
Choosing a prostate cancer treatment
After getting over the initial shock of a diagnosis, you begin to hear the music play as you accept the fact that some form of treatment is the next option. Regardless of the treatment chosen, you and your family are emerged in a new world where you are moved along a totally unfamiliar but well-defined path and to the entrance of the ride.
The length of your ride will differ depending on which treatment horse you choose. Will it be the stationary “robotic surgery stallion,” with just a few up and down movements? Or are your odds better for catching the brass ring if you decide to ride the days and weeks of ups and downs of the “radiation pony?”
If your horse is named surgery, your ride typically is an overnight event. All along the way you are surrounded by folks guiding you at every step until you leave the next day knowing your prostate has been removed. If your chosen horse is radiation, your ride may last for as long as 8 weeks, and your outcome may not be know for up to 24 months.
After the ride ends
You as a patient you are guided through a maze of forms and tests that are designed to put you on the merry-go-round for a set time. All along you are told that somewhere on this spinning journey, you might be able to catch the brass ring called a cure.
Once the ride ends, you suddenly find you are on your own with no brass ring. No longer are you flanked by nurses or radiation technicians who offer reassuring comfort and guidance at every step.
Once you leave the hospital or complete your course of treatment and everyone cheers and bells ring, you are left to deal with the physical aftermath, along with the emotional and mental adjustment of discovering what a new normal will look like.
Continuing to watch
Before treatment you probably had few to no symptoms, and yet a simple blood test and biopsy offered a clue that something was of concern. Just before surgery, I was laying on the operating table asking myself is this necessary.
After treatment, you hope it worked and that your prostate cancer is gone. Then your urologist tells you to continue with ultra sensitive PSA testing every few months “just be sure nothing is returning.”
And at some point, it becomes clear.
Using the word "cure" with caution
Regardless of treatment option, you will not know for a while if your cancer has or has not be "cured." You learn that you are in a state of remission that may be temporary, or it may indeed be the brass ring you had hoped for.
So why do cancer survivors often refer to themselves as patients long after their cancer has been undetectable? Perhaps the answer is the word "cure" should be used with caution when you deal with prostate cancer.
Do you feel heard and understood by your doctor?