Amy’s Story: “Follow your instinct, believe in your strength and live fully in the present moment.”

Amy Samuel began with unexpected symptoms that led to a surprising diagnosis and a journey that took her across countries, through treatment and into a new chapter of life. Along the way, she faced fear and uncertainty but discovered strength, faith, and the importance of community. Today, she reflects on her experience with gratitude and purpose, using her voice to support others and raise awareness. This is Amy’s story:

My journey began in 2022 while I was in Senegal, West Africa. One morning, I noticed I was going to the bathroom constantly. It became so frequent that urine was coming out before I could even reach the bathroom. I thought something was wrong, so I went to see a gastroenterologist because I’ve dealt with chronic constipation since childhood. I hadn’t gone to the bathroom in three weeks, and I assumed the pressure was causing my bladder issues.

While the doctor was doing an ultrasound, I saw his face change. I knew immediately something wasn’t right. He told me it had nothing to do with my constipation. I had no pain and no blood in my urine, but he said he saw what looked like a tumor and recommended a CT scan. I did the scan, returned the next day, and there was a large mass in my bladder.

I was sent to a urologist that same afternoon. He said he couldn’t confirm it yet, but it looked like bladder cancer, and that a biopsy was needed. In Senegal, biopsies can take 45 days or more because samples are sent abroad. I knew I didn’t have time to wait, so I flew to Portugal, where my sister lives. Within 24 hours, they repeated all the tests, did the biopsy, and confirmed I had bladder cancer, T1 carcinoma. The next day, I had a TURBT, and three weeks later, I started BCG immunotherapy and remained in Portugal for three years.

At first, BCG caused fever and rashes, but over time, my body tolerated it. I stayed on BCG treatment for three years. A month ago, after moving to New York City, I learned I am cancer-free. I’m grateful, but I also know that remission doesn’t mean you stop being careful. I’ve had recurrences and am considered high risk and high grade, so I take life gently now.

I still deal with extreme fatigue, numbness in my legs, and joint pain. Some of these symptoms existed before my diagnosis, and I thought they were menopause. I was 50 when diagnosed, and I’m 53 now.

What truly helped heal me was my mindset. I am spiritually Muslim, deeply positive and committed to my mental health. I don’t smoke, drink, or eat junk food and I believe my immune system and attitude played a huge role in my healing. I focus on positivity, what I read, what I hear, what I allow into my life.

I’m also an advocate. I support a community of Senegalese cancer patients where cancer is still taboo. They talk to me when they can’t talk to doctors. I help guide them, share what my doctors say, and encourage them to seek care. Advocacy has been healing for me and for me. I also fight to raise awareness about bladder cancer in Senegal, where water parasites are silently killing children and increasing cancer risk.

When I was told I had cancer, I was alone. The doctor didn’t know how to tell me. I told him not to be afraid, just tell me. I asked him one thing: don’t tell me what I can’t do. Tell me what I should do to heal. I sat alone for an hour and a half after that appointment, grounding myself before sharing the news with my family. I chose gratitude and calm so they wouldn’t fall into chaos. Even in my worst moments, I stayed positive for myself and for them.

My advice to anyone newly diagnosed is simple: be positive and have faith. Don’t let the word “cancer” define you. Treat it like something you can work through. Reconnect with yourself. Cut off negativity, even if it’s family or friends. Cancer is sometimes a message telling you to stop running and start listening to yourself.

I learned about BCAN and the bladder cancer community through the World Bladder Cancer Patient Coalition. BCAN gave me answers, resources and hope when I felt lost. Through conferences and connections, I learned I wasn’t alone. This community became a family, one that supports you in ways even loved ones can’t.

If I could speak to myself on the day I was diagnosed, I would say: follow your instinct, believe in your strength, and live fully in the present moment. Not yesterday. Not tomorrow. The now. That’s how you heal.