Diana’s Story: Be Positive, Informed and Realistic

My journey with cancer started 14 years ago when I was diagnosed with endometrial cancer. I had a hysterectomy, and no further treatment was necessary. But after I healed, I experienced intermittent spotting a few times a year. I had it checked out thoroughly, and my oncologist assured me that women of a certain age, especially after hysterectomies, slough off dead cells. She assured me there was nothing wrong. So when I saw a slight discoloration on the toilet paper after urinating, I convinced myself it was nothing.

In 2021, I had moved to New York and had my first annual visit with an NYU gynecologist. It was at that visit that I could no longer ignore a symptom that might indicate cancer. As I did the routine urinalysis, the urine was bright red! My gynecologist examined me right away to see if it was from a female source or hemorrhoids, and she immediately determined it was not. The urinalysis showed a slight UTI, but not severe enough to cause such intense bleeding. I was told to see a urologist, but I had to find one on my own. That was not easy because the recommended urologist was booked two months out. I took the first appointment I could get with a young urologist who had an opening a week later and who turned out to be appropriately anxious to get things taken care of. It was a virtual visit, and I remember him saying, “This is definitely something to be concerned about. I want you to get a CAT scan and cystoscopy immediately.” He was sure it was cancer.

Everything moved quickly after that. I spoke with him on a Friday. That Monday, I had my CAT scan that showed a tumor. He did the cystoscopy on Tuesday.

I did not know what to expect with the cystoscopy, but I found it painless and fascinating but frightening. You see everything on a huge monitor. It is like you are under the sea, and attached to a smooth surface, my bladder, there is this mushroom-like growth wavering in the fluid like a little sea anemone. It was incredible. But then I am thinking, “Oh Jesus, what is that?”

After my cystoscopy, it was time to schedule surgery to remove the tumor. I had to get cleared by my internist and cardiologist because I also have heart disease, and the anesthesiologist was concerned. The surgery was a week after the cystoscopy. It took an hour, and I was sent home a couple of hours later. The only effect I had was from the anesthesia. Advice: Do not eat too much after surgery. Start slowly. I ended up at emergency that night with a terrible case of acid reflux.

I had to have a catheter for two days at home. That was a little uncomfortable, but not terrible. Then it was time for me to wait for the pathology to come back. That was the hard part. I received the results, and it was good and bad news. The good news was it was self-contained and not invasive of the bladder muscle, but the bad news was it was high grade. This prompted me to do some research, and I found myself going down a rabbit hole with all the information I was seeing. My family told me not to search online for information that wasn’t necessarily correct. But I am happy I found BCAN. BCAN’s site was a massive help in preparing for surgery and treatment. In addition, I was well informed by my surgeon about what to expect from diagnosis through surgery. I was then referred to an NYU oncologist for BCG treatment. His staff failed to send me any information about the BCG infusions and did not respond to my call two days before my first treatment. So, I learned how to prepare by reading information on the BCAN site and speaking to a friend who has had BCG treatments.

Five weeks after surgery, it was time for my first BCG treatment of six. Then I wait a month and have another cystoscopy.

So far, my treatments have been going well. The first time I did not even feel the bladder filling; the second time, I did, but I was able to walk a mile home easily. The third time, I felt slight burning for two hours as I eliminated the medication. I have heard some people experience moderate to severe discomfort after the third or fourth treatment, so this mild discomfort was anticipated.

So far, my journey with bladder cancer has not been as bad as I feared. I find it weird that there has been so little discomfort to date, except emotionally, of course. The fear of the unknown is there. Luckily for me, I have my family and friends to help me process everything.

My husband does not worry, which is a beautiful attribute. He says, “Don’t worry about the future or what you can’t control. Worry about what you can control.” I don’t want him to be overwrought about it. We have not talked about the heavy nature of it, but at some point, we will have to do that. I worry about my grandkids and what they are thinking. I keep reassuring them I will be fine and that I am not in any pain. I want to be a role model for them. My grandson deals with epilepsy. You cannot decide what you get to deal with in your life, so I am thinking, let’s do this in a productive way for the family and keep the depressive thoughts away as much as possible.

My advice for newly diagnosed patients is to move as fast as possible through the diagnosis and surgery process. Panic early when you see any sign of spotting and see a doctor. Once diagnosed, talk to people who have experienced bladder cancer if you can. Try to avoid discussion about your illness with people who react with a depressed response or people who must tell you about all their friends who have had cancer. It can be exhausting trying to cheer them up when dealing with the shock of a serious cancer diagnosis.

Being positive but informed and realistic is my preference. May the news ahead be positive for all who read this story!