The Hidden Anxiety of Bladder Cancer Surveillance

Last updated: May 2022

I finally had my follow-up cystoscopy a month ago. Yes, it was about six months overdue. I wasn't nervous, at first. But the longer I went without an exam, the more concerned I became. Having consulted with my new urologist, I am confident in the treatment plan we've made. So, why do I have hidden anxiety with my bladder cancer?

What am I anxious about?

Doctors have assured me not to worry. If we catch the recurrences early, the prognosis is favorable. Still, my anxiety is triggered by simply planning the procedures and treatments. And now, I have started to feel the uncertainty of my prognosis for several reasons.

I was 24 when my uncle's bladder was surgically removed. I didn't know why then. But I wondered how he would live without it. He passed away shortly thereafter, and the image of him pushing a catheter bag around stays with me.

Then, just last week, I learned that a friend's bladder was removed due to bladder cancer recurrence. Years ago, her diagnosis was similar to mine--low-grade NMIBC. It unnerves me to know that her BCG treatments were not effective.

My latest recurrence is concerning

In the meantime, my doctor wonders why I never received chemo induction in the past. She is concerned that the "robust papillary carpeting" we found might be squamous cell metaplasia. Even more concerning is that it surrounds the right urethral orifice. She mentioned possibly stenting the ureter. Thankfully, the CT scan showed no evidence of cancer inside the vessel.

We discussed starting gemcitabine induction once my bladder has healed from a 6th TURBT with intravesical chemotherapy. That is a lot to wrap my head around.

Whether it is early or late-stage, low or high-grade, I must reorder my life to accommodate the treatments. On the other hand, recovery could be the ideal time to process hidden anxiety.

Working through the hidden anxiety of bladder cancer

It is unlike me to be nervous about the upcoming TURBT. I have done it so many times.

After nearly 17 years since the first diagnosis, I am well informed. And yet, my emotions are all jumbled up. First, I feel like a warrior. Then, I feel sad and defeated. One minute I am avoidant and isolating. The next minute I want the hugs and company of a good friend. But most of the time, I feel guilty about imposing on others.

Sometimes I feel that my case (NMIBC) does not warrant a trip to Seattle (Cancer Care Alliance). I know how silly it sounds. And yet, it boggles my subconscious mind.

While people around me fight for their lives through chemotherapy, I endure an occasional intrusive exam. I feel embarrassed, a little ashamed, to be fussing over myself. At the same time, I know that I am preventing the cancer's progression. If only I could hold that thought through all this confusion.

Reaching out for support

All but one of my relatives have moved away. Nevertheless, I decided not to trouble my friends for a ride to the last appointment.

I drove to Angle Lake Station and took the light rail to the University of Washington Medical Center. When it was over, I wanted to share what I'd just experienced.

I needed someone to ask me how it went. So, I texted a friend this message: I finally had my checkup. Yay! On the ride back came the reply, "Go, sister! How did it go?" It wasn't the same as her being there, but I was glad for the exchange. I nearly broke down after asking her to visit me during my recovery.

It's difficult to share that I am struggling with loneliness and a sense of aloneness. Loneliness is the feeling of aloneness, not the reality. I would love to blame it on pandemic isolation. In a way, I've created my own loneliness. But I know it's due to my reluctance to be a bother, even to family. So, I've resolved to change my ways.

Last night, I reached out to a friend I last saw before the pandemic shutdown. Today, I gave a coworker my address so she can send me a card. Another gave me her cell number to call should I need anything. I just need to make the call.

Making the right choices

I tend to ruminate and worry over important decisions. Part of me struggles with agreeing to the 6-week chemo induction. Another part believes it is the right thing to do. Only time will tell. That is where my faith comes in. It is the voice of reason that tells me I can trust in my own wisdom. So, I'm standing on faith and love.

Have you ever dealt with the hidden anxiety of bladder cancer surveillance? Tell us about your experience in the comments below, or share your story with the community.

By providing your email address, you are agreeing to our privacy policy.

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.

Join the conversation

or create an account to comment.

Community Poll

Do friends and family ask about your bladder cancer?