Fears of Recurrence: A Constant Reminder to Remain Vigilant
Last updated: October 2022
It is always great to see people celebrating the anniversary of the date they had their radical cystectomy, were declared NED [no evidence of disease], or cancer-free.
We all hope to get to a time when we do not worry about cancer rearing its ugly head again and we can breathe easy. It sits in the back of our minds but that worry does seem to lessen as time goes on but is it ever completely gone?
To be honest, I do not think that fear ever goes away completely even when we have been declared cancer-free for years. The slightest hiccup and we are in the "scared" zone again. I rarely worry about getting cancer again but for the first time in many years, I did just that.
I'm cancer-free, forever?
I had RC/IC on September 30, 2014, and that same day my doctors declared me cancer-free. As I was T1HG at the time of my surgery my cancer was contained in my bladder, with the exception of a few cells found in my urethra, all of which were removed.
With that villain gone, I should not worry again - right? Not so fast...
Follow-ups continue for years after treatment ends
Over the years I had my 3-month, 6-month, and then annual checkups starting at year three. I found that the only time I thought about my cancer returning was just before my annual test results and appointment with my urologist. But this year was different.
Getting in to see doctors takes longer now
With all that has been going on, it seems to take a lot longer to get in to see a doctor, have testing, and so on.
I was scheduled in late September for a kidney ultrasound - my first, after years of CT/contrast scans, blood work, and chest x-rays. It took about 20 minutes and I watched the screen when I could see it. Normally I zoned out during tests but not this time for some reason. It took what seemed like forever to finally see my doctor in late November.
He said that everything was great. He expected no problems at all, told me to leave a urine sample and he would see me in a year.
I needed answers before my vacation
With an out-of-the-country vacation coming up I was happy to have my tests and appointment out of the way for another year. I was good to go and would see my urologist/oncologist next fall.
Just when I thought it was "safe to go in the water," I get a call from the doctor's office in early January.
An unexpected call from the doctor's office
It was the nurse practitioner from the urologist's office calling to say that there were "suspicious cells" found in my urine and the doctor wanted me to have a Fish test right away to rule out any issues.
I was instructed not to worry as my doctor felt confident that this was going to be fine. Of course, my mind went in all directions and most of them were not good.
I completely trust my doctor, and I recalled him telling me when I was first diagnosed that whatever may come up, "We will figure out a plan and get through it as a team."
Trying not to stress out
I went in immediately for a Fish test. I tried not to stress for the 2 weeks it took to finally get the call that all was fine and negative.
I was actually driving to the airport for a 12-day trip to Nuevo Vallarta, Mexico, when the doctor called with my clear results. It was so nice to hear the "all clear" before heading on vacation, as I knew that I would not enjoy my trip as much due to the constant "What if it's back?"
Breathing easier but remaining vigilant forever
Apparently, my urine sample sat for so long before being tested the lab was not confident that the results were accurate. While I do not think that I will ever stop worrying completely about cancer returning, it is honestly rarely on my mind.
I also do not see myself ever being comfortable stopping all testing in the future. My doctor said that after 10 years, my insurance probably would not pay for tests unless there was a reason to do so. That is a double-edged sword, for sure. I see myself paying for some tests after 10 years, as my peace of mind is worth that.
Coping with the fears of bladder cancer returning
We can never become complacent about this disease while at the same time keeping it from being the main focus of our lives. It is not always an easy balance to achieve.
The lesson I learned from this scare was that we should live our lives to the fullest every single day while being vigilant with our treatments, testing, and appointments. My very best to everyone going through this challenge in their lives.
How long did it take for you to receive a bladder cancer diagnosis?