Shannon’s Story: “This experience doesn’t define who I am at my core.”

At just 35 years old, Shannon received a bladder cancer diagnosis. She opens up about her experience managing this illness while continuing to work, highlighting its effects on her career, mental well-being, and physical health. Despite the difficulties of her diagnosis, Shannon’s message is clear – bladder cancer doesn’t define you: “This has nothing to do with who you are at your core, at a soul level. It’s something that you’re experiencing. It’s something that’s happened to you.”

I had symptoms for six months before I was diagnosed. My symptoms were similar to other women in that it felt like a bad urinary tract infection – severe burning when I urinated and always feeling like I had to go to the bathroom even if nothing came out. I didn’t have blood in my urine. The pain would subside at times but got progressively worse. I was given antibiotics three times to treat a UTI that I never had.

As for risk factors, I don’t smoke and haven’t been around much secondhand smoke. I have not been exposed to dyes and chemicals and a genetic test revealed nothing of the sort. There was no explanation.

After several urinalysis tests, my urologist conducted a cystoscopy and later a TURBT. With each test, we got closer to understanding what was wrong so, despite nerves, I was relieved. My doctors were great at explaining what they were doing, looking for, and expected to find. I was under anesthesia during the procedures and didn’t feel anything.

Eventually, I got an answer I was not expecting. I was diagnosed with non-muscle invasive bladder cancer, specifically carcinoma in situ of the urothelium (CIS). My cancer was early stage (localized) and high grade, likely to reoccur.

For treatment, my doctors prescribed a TURBT procedure followed by a series of BCG treatments consisting of immunotherapy.

When BCG was initially explained to me, I learned about catheters. Beyond knowing they help when you can’t urinate normally, I had no idea what to expect. The insertion was just a quick pinch. From there, the medicine was pushed into the catheter with what looked like a large, blunt needle. All told, it was fairly easy. It took about 15 minutes, and I left the hospital right after.

The medicine was held in my bladder for two hours. This part was pain free but when urinating after, there was strong burning and a sense of urgency for about two days. I was also fatigued. To date, I’ve had 16 treatments and am halfway through my three-year treatment plan.

Overall, treatment wasn’t the toughest.

One of the hardest parts was figuring out how to manage my diagnosis while working.

When I was diagnosed, I had been at my job for three months. I was hired during COVID, hadn’t met my colleagues in person, and had just joined my employer’s insurance.

Before my own diagnosis, I thought getting cancer meant you had to quit your job or have your career severely impacted. So I really was unsure how to handle my situation at work. I had no idea who I was supposed to tell, how to tell them, what to tell them, and when it was appropriate.

My manager knew something was going on with me because I had to miss a board meeting when it was scheduled at the only time my doctor could do a biopsy. Constantly feeling like I had to go to the bathroom was also becoming apparent when I had to excuse myself several times during meetings.

My decision to share the diagnosis required a sense of balance. On the one hand, I didn’t want pity or to raise concern about my ability to do my job well. On the other hand, I knew it would be hard to keep secret and ultimately needed support. Scheduling impacts were inevitable despite my plan to keep working.  The first month of my bladder cancer journey, like most people’s, was exhausting and filled with nonstop calls, appointments, meetings, and research.

I ultimately decided to share with my colleagues to relieve myself of the stress of remembering who I told and what I shared. I wanted to go to appointments and take time off with transparency and a team of people supporting me. For me, sharing with colleagues was easy, met with compassion, and ultimately made my life easier.

I was lucky to have a phenomenal therapist before my diagnosis and I was able to call upon so much of what I’ve learned from her to manage this situation. I knew the only way to handle emotions was to face them and move through them like waves – to know they would come and let them peak even if they wiped me out because ultimately they would subside, and I’d be spit out stronger on the other side. At the time of diagnosis and all the days since, I work on treating myself gently and feeling whatever comes.

Telling family and friends was very tough. I knew they were scared and were often waiting for updates. In some ways, I felt it was tougher on them because I had a plan I was able to execute, all they could do was support me from the sidelines. That said, I tried to keep in mind that I was not responsible for their feelings or carrying the weight of their emotions. It was important I stay in a good headspace.

It was imperative to set boundaries and communicate clearly. If I didn’t want to talk, I would text or say I just wasn’t up for chatting. People often offer advice when they hear you have cancer. Some of it’s helpful, but much of it isn’t. Being clear about what I was open to talking about helped curb the overwhelm.

This experience doesn’t define who I am at my core. It’s something I’m going through.

I was diagnosed on May 14, 2021, and despite knowing I shouldn’t Google my diagnosis, I searched the internet the next day. Thankfully, I quickly found BCAN. I needed resources to understand my situation, learn terminology, and find a source of hope. BCAN’s content was clear, factual, and optimistic. It felt like a community. BCAN was a great resource for my friends and family too. Being able to direct them to the website’s resources instead of explaining everything myself was very helpful.

I’m sharing my story because maybe it will resonate with others, even though no two experiences with cancer will be exactly the same. Everyone’s preferences, experiences, and support systems are unique and evolve over time. There’s no universal cancer plan. My advice is to try not to stress about whether your thoughts and feelings are “normal.” If you’re experiencing them, they are. Work to eliminate self-judgment and give yourself a lot of love and grace.

You can also learn more about Shannon’s story by tuning into her episode on the Bladder Cancer Matters Podcast below.