as said Shannon Shelton Miller
During my annual Pap test, my gynecologist was very worried after I felt a lump that she thought was my ovary. The ultrasound showed it was in my bladder, so he referred me to a urologist for further testing.
I immediately started crying. I had never heard of bladder cancer, so I had just about all kinds of questions. “What is it? Where did it come from? How did I get it? Will I die?” I was only 30 years old and had no children. That was my other big question – would I be able to have them? The clinic gave me some information, so I went home and told my family. Then I went online to start my research.
I didn’t think I had any signs or symptoms that I might have. red flag for bladder cancer. According to research, bladder cancer mostly affects older men, and smoking is one of the biggest risk factors. I do not smoke, but as a young adult I was exposed to second-hand smoke when family, friends or family smoked.
While I have ongoing problems with urinary tract infections (UTI) and kidney stones, I would always go to a doctor and take antibiotics and it would go away. Looking back, I thought the blood I saw in my urine was menstrual blood or related to UTIs, but now I know that this was probably a red flag for bladder cancer.
i spent bladder tumor transurethral resection (TURBT) surgery had to return every three months for another cystoscopy to remove the tumor and check for cancer recurrence. The recurrence rate of bladder cancer was 80% and for some reason the cancer was returning at every examination. The pain from the surgery and cystoscopy was so unbearable that it made it hard for me to urinate. To facilitate this, my healthcare providers gave me painkillers and I had a treatment with an antitumor chemotherapy drug.
This cycle continued for about three years. I was going to get treatment, but I had the cancer come back three months later.
I was once told that my urologist would not be available for my regular checkup and would have to reschedule my appointments. I told them I didn’t want to do this because I had a history of bladder cancer recurrence. I immediately became an advocate for myself and my health and told them to find another urologist who could see me right away.
My new urologist has managed to simplify things in a way that I can understand. She even drew pictures for us to explain everything she would do for my husband and me. He resumed chemotherapy drug therapy and took a more aggressive approach to my treatment.
This time, the cancer did not return at my quarterly checkup. I eventually graduated from getting a six-month appointment every three months and then went to get checked out every year. More than 10 years have passed since my recurrence. I am very happy to have found a different urologist to talk to myself and take my concerns seriously.
Although I am cancer-free, bladder cancer has affected my overall quality of life. My bladder muscles are very weak and I am having a lot of leakage. I watch my fluid intake and the first thing I look for when I go out is the toilet. Because when I have to go, I know there’s no way to hold it. I just have to go.
One of the positives is that I no longer have as much pain as before. My cancer was non-invasive so it didn’t get into my bladder and I was able to hold my bladder because they reached the tumor early. Still, I know I will need regular monitoring for life, and I will always need to be checked out to make sure the cancer doesn’t come back.
I also dealt with a lot of anxiety and depression because having to see a urologist every three months was mentally draining and it’s scary to think that the cancer could come back. Even now I get nervous when I go for a checkup. I just try to stay positive and do things that help relax my mind. I went to counseling for anxiety and took medication and I also find hiking in nature very calming. Personal care must have!
Having a great support system is also very important. My strong faith in God has helped me on this journey and along with my husband, family and friends. Bladder Cancer Advocacy Network (BCAN) and the God Can Cancer Support Group, which has helped encourage me on this journey. I am currently chair of the Richmond, Virginia, BCAN Chapter, and help plan awareness walks in my community to educate people about the signs and symptoms of bladder cancer so they know the dangers to watch out for. Support groups also let you know that you don’t have to go on this journey alone.
In 2017, I started a new cancer journey. during breast self-examI discovered a lump in my armpit. Luckily, I had my mammogram scheduled for that week, because when the lump appeared in the image, I was told that I needed to see the breast surgeon immediately.
I have now overcome breast and bladder cancer, but since I am a double cancer survivor I had to see my urologist every six months to monitor more closely.
Cancer doesn’t have to be a death sentence. I survive and thrive after cancer. Awareness is essential for prevention, so get regular screenings and checkups and do breast self-exams. Being an advocate for yourself is important, it gives you the ability to communicate your needs physically, spiritually and mentally. Be sure to talk to your healthcare providers and never lessen your feelings, pain or discomfort in your body. No one knows your body better than you!
This resource was created with the joint support of Astellas and Seagen.