No Evidence of Disease
Last updated: February 2022
It finally happened. Two years into treatment and I received the scan report I had been hoping for. The report read "no evidence of disease recurrence or progression".
This means at that moment there were no visible signs of cancer in my body. The choice to have drastic surgery and try a relatively new treatment protocol paid off.
All my questions about whether I should have done traditional chemotherapy or if the immunotherapy was doing anything at all were answered. And honestly, it was bittersweet.
No evidence of disease as a chronic cancer patient
Being that I was diagnosed with such advanced cancer and it had shown up in my surrounding lymph nodes - I cannot stop treatment.
I like to think of it as having mono. Once you've had it you're prone to having it pop up again. Cancer that has invaded your lymphatic system is the same way. Without maintenance treatment it could and would most likely pop up again. Who knows where.
So there is no ringing of the bell for me. That realization is what took some of the excitement out of reading my results.
Winning the battle but not the war
I think fear was the next part of what dulled my celebratory mood. Having cancer is scary, but sometimes not having it visible anymore is scarier.
Ever since we got my cancer under control and leading up to my no evidence of disease results it has felt like being stalked by a tiger. You know it's there just out of the corner of your eye, but you do your best to ignore it. There is this overwhelming fear that one day the tiger may decide to pounce. And for those of us who've already been smacked around by that tiger once before we know exactly what we are in for if it happens again.
Even though at the moment we aren't seeing cancer, I can't shake the feeling that it is going to show up again. I am reminded, however, that small victories still need to be celebrated. And I've tried to enjoy this time of being able to say, "I've won this particular battle with my disease."
The risk is too great
Stage IV patients like myself are in this weird predicament. We can get clean scan results, but our medical teams will not rule us cancer-free and very rarely will stop treatment because the risk is too great. Cancer could spread or show up somewhere new and recurrence can make treatment even more difficult.
The treatment and monitoring keep going.
Although I have a nagging thought of "what if" in the back of my mind, I have been trying really hard to enjoy being able to say there's no cancer for the moment. I definitely had a very indulgent night out with my husband when we got the results.
To my fellow chronic cancer patients
If you are a fellow chronic cancer patient who won't have the opportunity to ring the bell or stop treatment I send all my support your way. I hope each of you has the opportunity at the very least to read "no evidence of disease" on your scan reports.
How long did it take for you to receive a bladder cancer diagnosis?