Kristen’s Story: I Was 22 Years Old When I Was Diagnosed

At the age of 22, I was diagnosed with bladder cancer. For eight months, I had been experiencing bloating, burning during urination and abdominal pain. Initially, I thought it might be hormonal due to stopping my birth control. This prompted me to see my gynecologist, who told me I was okay. However, I knew something was wrong, so I made an appointment with my primary care physician.

Kristen S.

Going in for my appointment, I was not expecting my symptoms to be dismissed. In two months, I had gained 35 pounds and the weight gain was only in one place, my lower abdomen. I looked as if I was four months pregnant. My doctor attributed my symptoms to being in nursing school and just “getting fat.” That infuriated me. I kept saying to my mother, an RN, “Something just isn’t right. I know my body, and I’m telling you something feels off.” I was passing out a lot. My hemoglobin was low. It was around 9 or 10. My eyes had very dark circles and were sunken in and my feet were swollen. I looked sick, and my classmates often asked, “Can you continue nursing school?” And my response would be, “Oh yeah, all the doctors say I’m fine,” but I was not.

Months went by, pleading with doctors to look further into my symptoms, and it was not until a gynecologist reached out to me because he found my medical chart and thought it looked interesting. He had me come in to do an abdominal ultrasound and where he discovered a lesion one centimeter in size. He thought that this was concerning and referred me to a urologist.

The next available appointment for the urologist was not until two months later, in November. I remember him saying there was a zero to one percent chance that I had bladder cancer because of my age. He assumed something might be growing from my uterus protruding into my bladder, but he would perform a cystoscopy to make sure. In the two months it took for me to see the urologist, the tumor had grown from one to three centimeters, but I was still hopeful that things would be okay.

The day came for my cystoscopy, December 12th, 2022, which should have given me red flags. Usually, when performing this procedure, doctors often use a flexible scope to look into the bladder, but my urologist used one that was steel and rigid, and with no local anesthetic.  This caused me to have a lot of bleeding and extreme pain: the most painful thing I have been through in my life. I was crying profusely and could not get comfortable. Lying there, with my legs in the stirrups, the doctor scooted back in his chair and said, “You have bladder cancer.” Here I am, mortified by what just happened, and then I get the news in a not-so-ideal way that I have cancer. I was in shock.

Every thought I could have had went through my mind. I was in denial, saying, “Well, this can’t be cancer. I am only 22.” I had just graduated from nursing school.

My mother had gone with me that day, and I am so thankful she did, but when I saw the look on her face, I knew I heard correctly I had bladder cancer. Sitting there in disbelief, the doctor told me he will “get it out” and left abruptly. He left so quickly he forgot to take the biopsy with him. Assuming that he was in shock himself after telling me that there was no way possible, I could have bladder cancer to have now this rare case of someone in my age bracket having it.

On December 20th, I had surgery to remove the tumor and it had grown to five centimeters. I affectionately named my tumor Billy, Billy the bladder tumor, and I just wanted Billy out. During the resection of Billy, my urologist explained that he would remove it and additional tissue for testing, but he forgot the additional tissue and only took the tumor. I made up my mind that day I would not be going back to him.

After the TURBT procedure, I saw an oncologist who referred me to Advent Health in Orlando, Florida, where he emphasized, they had some of the best doctors in the country that I could see. He jokingly said they would probably want to poke and prod me a little because I was so young. Once there, we were trying to plan my treatment of care, but because the previous doctor did not do the deep tissue biopsy, I had to have another resection. I was scheduled for surgery February 10, 2023, which I am still recovering from. Unfortunately, because my bladder wall was so thin, I had a bladder perforation and was in the hospital for four days and had a catheter in for two weeks.

I was told that I have a urethral transitional cell carcinoma, high-grade aggressive cancer. They were able to remove everything and did not find additional tumors in the deep tissue and now, I have no evidence of disease. My current treatment is six rounds of BCG for six weeks, which I recently started. Although I am happy, we finally found out what was going on; I am angry that no one took me seriously. My mother and I begged and begged just for one simple test to be taken that could have told us everything.

My advice to others like me would be, if you feel like something is wrong, do not stop until someone listens to you. Push for it. In my case, it was one ultrasound that told me everything. If I had accepted it, by the time we found out, it could have encased my whole bladder, and then it would have been too late for my bladder or me. I am lucky enough that I also had my fiancé. He really advocated for me. It was moments when I could not advocate for myself, but he and my mom stepped in and did. So having a great support system as well is extremely important.

Dr. Guru Sonpavde, my oncologist and a member of BCAN’s Scientific Advisory Board, told me about BCAN and urged me to share my story. Reading this, I want people to understand just because a patient may be young does not mean they are exempt from bladder cancer or any illness. Anything can happen at any age. So, doctors need to listen to their patients. Also, if you are young, please take your health seriously. Get your routine checkups and advocate for yourself.