Surrounded by dark clouds, a man walks through a door towards a bright light.

Living the 1 Percent

Last updated: January 2023

From the day of my diagnosis, I have always been "different." I was too young (only 28 years old at diagnosis). I was a woman. I had never smoked or been exposed to chemicals. My symptoms didn't present as expected. And more importantly, I was diagnosed at stage 4.

I have been a walking conundrum for my medical team from the start. I survived a surgery that was understood to be very dangerous while I was so unstable. I've been fully awake for most of my procedures - constantly proving the anecdote that redheads are resistant to anesthesia. I even responded to my Hail Mary immunotherapy treatment when I couldn't try traditional chemotherapy or radiation.

Well, today, I get to add one more oddity to the ongoing case study my team has about me. I am over a year cancer free. You heard that right, no evidence of disease in this body for 17 whole months.

"No metastatic disease"

I remember reading the first set of scans in June 2021 that noted "no metastatic disease." I could barely get the words out when I called my husband.

I was never supposed to have clear scans. I had made peace with the idea of my cancer being chronic. It would always just be there, and I would be in forever treatment.

I also didn't trust the scan results were permanent. As fun as it was to celebrate the clear report, I just knew my next scans would show something again.

Well, they didn't, and the next ones didn't, and the next ones didn't. Once a year passed, I had to sit with my oncologist and discuss what this meant.

Joining the 1 percent club

She hit me with the wildest statistic I've heard since my diagnosis — 1 percent.

I have found myself in the 1 percent of stage 4 patients to have a total response to immunotherapy. When you add in my age, specific diagnosis, treatment protocol, and now being over 3 years out from diagnosis, I make up just a fraction of a percent of bladder cancer patients worldwide.

Per my oncologist, I really am one of a kind and super weird.

Being one of a kind and super weird

As exciting as this is, it also brings a very daunting reality. My medical facility has never treated a patient like me; moreover, the data on patients like me doesn't exist right now.

In the grand scheme of bladder cancer treatment, immunotherapy is still in its infancy, and using it as a first-line treatment for stage 4 patients only just got out of clinical trials.

Doctors and researchers are still learning, and we don't have the guiding data typically available for other cancers and earlier stages. So the decisions we make now regarding my treatment and future, in general, involve much discussion and a few educated guesses based on what we know.

Surviving advanced bladder cancer

As nerve-wracking as being a guinea pig for this part of my cancer journey, I have so much trust in the very educated and motivated medical team around me. In the cancer community, students sure do love to study you!

I share this not as a celebratory moment but to truly show that each person's cancer experience is vastly different. Statistics only tell part of the story.

As much as we can take anecdotal knowledge from support groups and message boards, what works for one person may not work for the next. It really takes a holistic approach of relying on a fantastic group of professionals and sprinkling in the gems of knowledge we glean from fellow fighters to make decisions.

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This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The BladderCancer.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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