Barbara’s Story: “You Have Cancer” is Something No One Wants to Hear

My first indication that something was wrong was that I began having heavy bleeding, which was very scary.  As a female, I wasn’t even sure where it was coming from.  I called my doctor, and the nurse practitioner told me to come in for a urine test.  I was then told I had a bladder infection, which I thought was odd as I never had had bleeding with any bladder infection, and this was a lot of bleeding, with clots.  I was prescribed antibiotics, but after three days there was no change, so I called back and emphasized to her that “something is really wrong”, so she referred me to a urologist.  We need to pay attention to our gut feelings.

The urologist did a cystoscopy, which was quick and not painful.  She told me there was a tumor and she took a tissue sample. She said I did not have cystitis. I liked her (very important!) and I was glad to have a female as I just felt more comfortable. A few days later she called and told me the tumor was malignant, but still only on the bladder lining and not into the muscle.  I asked her what would have happened if the bleeding hadn’t started, and she told me they almost always start to bleed at some point.  That was my warning because I had no other symptoms.

I had surgery in October 2017, and it was pretty easy because it was removed in the hospital, under anesthesia, with a laser and I had no incision.  I went home the same day.  I went to see my urologist three months later for a checkup and unfortunately the tumor had returned, so another surgery was done to remove it, in the same way.  My urologist then told me that because the tumor had come back so quickly, she would like me to have BCG immunotherapy treatments.  She explained that this therapy had been used for bladder cancer for decades and was highly successful.  I felt on edge about the cancer returning and began the BCG treatments, once a week for six weeks. They involved a liquid being put into my bladder and held for one hour and were easy for me.

After completing this regimen, I went for a checkup three months later, and there was no tumor, so I was told to return in six months.  I continued this way, at first three months, then six, with each checkup being clear, and I last had a checkup in March 2021.  She told me I could now go for a year between checkups, but that if I ever felt anxious about it I could come in anytime for another checkup, which eased any concern I had.  I asked her if she thought it was the BCG treatments that prevented the tumor returning, and she said yes.  She also told me that during 2020 and Covid, some people were unable to have BCG because the chain of supply was interrupted, and they couldn’t get enough of it.

I know full well that I was so fortunate that this cancer was caught in such an early stage.  After reading what others have gone through, I am so grateful about this.  At first it was frightening because hearing the words, “you have cancer” is something no one ever wants to hear.  You don’t know what to expect, and your mind considers many things, but I made myself stay calm.  And I am so thankful for my excellent urologist and for laser surgery, and good care, and for BCG, and early detection.  Right at the start I began researching about bladder cancer on the internet, and that’s how I came across BCAN.  I hope my story will encourage others and give some knowledge and comfort.  Doing the research empowered me to know what questions to ask my doctor and gain a better understanding of the types of bladder cancer and the treatments.  I wish everyone the best as they deal with their individual situations.