Re-Staging My Bladder Cancer

It is strange to think that 2 years ago we really were unsure what my future would look like with bladder cancer. I was so sick, and we knew my radical cystectomy was purely a pain-relieving measure, not a cure. When I began treatment, there was an unsaid understanding that I would be receiving infusions for the rest of my life or "as long as it works."

At the time, we were content with taking this journey day by day.

Well, in a wild turn of events that I could have never predicted, my treatment worked well enough that we are now re-staging my cancer. Re-staging of cancer is uncommon, but I've been an uncommon case from the start so it is par for the course so far.

What is re-staging?

Well, it isn't as exciting as it may sound initially. Basically, we are now measuring exactly how well my treatment has performed. As I have now shown no evidence of disease for several months, we are using my next set of scans as my new baseline.

It is important to note with any type of restaging, the new stage classification is added to the original stage, but it doesn't replace it. The stage assigned at diagnosis is still the one that is most important when discussing statistics like survival rates. My medical records will still show I am a stage IV patient as it means I will always be at high risk of recurrence.

But there is excitement for another reason.

Re-staging my bladder cancer after immunotherapy

Re-staging my disease and my continuous clear scans in the future open a door I had never thought possible - ending my maintenance treatment.

If I continue to show no evidence of disease through the end of this year, we will begin the talks of stopping my immunotherapy, in the hopes that the treatment has done its job and I will remain cancer-free.

It is extremely exciting, but also a bit scary and anxiety-filled. Because I was diagnosed with such an advanced state of disease the possibility of recurrence will never go away.

And three months from now my scans may show something funny and we will find ourselves back at the plan of lifelong treatment. But if things continue to do well, we have to consider giving my body a break from treatment and see what happens.

Every cancer patient has a unique journey

Altogether this is just one more step in having the opportunity to declare myself cancer-free medically. And to even have this opportunity after not being sure I'd see my 29th birthday is absolutely incredible.

It just goes to show that every single cancer patient is so different. Each cancer patient will have a unique journey, and you really cannot judge your outcome based on someone else's story. But I do hope this gives another patient a glimmer of optimism about their journey.

Have you ever had the opportunity to re-stage your bladder cancer? What was it like? Tell us in the comments below, or share your story with the community.