Ben Manages an Unexpected Diagnosis

It all started in December of 2017. I was at a wedding and I urinated some blood. It was not a lot, but it had me worried. My wife is a nurse practitioner, so anything medical I go to her. I told her, “I literally just urinated blood. What should I do about this?” She said, “See if it happens again,” which it did not. She mentioned, “You might have just been passing some sort of stone.” Fast forward to the beginning of February, obviously, that had gone out of my mind. It was a one and done thing. As we were about to go to bed, I urinated and it looked like I poured a blood sample into the toilet bowl. It was pure blood. So, I told my wife, worried. She asked me the other symptoms if I had lower back pain and all that then said “We need to go to the emergency room.” She knew right off the bat what it was, in terms of it being a tumor or a mass. We went to the hospital that night. I found out that I had a mass in my bladder after a scan.

This happened on a Friday night at about 12:00 to 2:00 a.m., we were in the hospital. The only option we had was to come back on Monday, so they could take a look and see what it is. That Monday, I went back to the hospital. Mind you, those two days were the longest days of my life not knowing what was happening. But I did kind of know what was happening. I had my first cystoscopy. After my surgery, they told me if you had a catheter in, they obviously needed to do a lot of looking in there. It took until Wednesday to tell me that I had cancerous tumors removed from my bladder. Bladder cancer, when they told me that, I thought “I didn’t even know you could get cancer in the bladder.” It didn’t even strike my mind.

All while this is going on, my wife is pregnant. We had just announced that we were pregnant to everyone a week before this happened. We were on a rollercoaster of emotion. One moment you’re at the highest moment of your life and then the next week you have no idea what your life is even going to be. You don’t know until you get a diagnosis, am I even going to be around for this? My life’s going to be altered in a massive way. There are all these questions going on in my head, like why on Earth is this happening now? I’m 29 years old. I don’t smoke. I hardly drink. I work in an office. They were telling me that I had a cancer that mostly 60- 70-year-old men get from smoking or working with chemicals. I didn’t fit the criteria for any of this. There was a lot of asking, why? I didn’t understand. I was living the life I was supposed to and now at the biggest moment, I don’t know what to expect.

After that, we got a second opinion because they wanted to do BCG. We’re in New York, and we got a second opinion from Columbia Presbyterian. My urologist suggested we should just monitor this. In a  person my age, he felt that BCG was not right for me because of the side effects it could have. I guess that treatment, in his mind, was meant more for people who normally get this type of cancer. They used the blue light cystoscopy to see if anything was growing, or if there was anything that a normal scope couldn’t see.

When they went in the first time with Columbia Presbyterian, they actually found one more tumor that the regular scope at the other hospital didn’t even pick up on. They removed that in February of 2018. I’ve gone in for three or four more scopes to check. So far, I’ve been clean every single one, so that’s been a godsend in that sense.

I’m here today, obviously with a nine-month-old baby. We live life as best as we can now. I obviously have the fear of cancer coming back. I live my life, but there’s that seal on life that when something bad happens to you, it’s broken. Unfortunately, that happened to me at 29, so I have to live with that for the rest of my life, of just knowing that bad things can happen to you.

Obviously, most people don’t have the benefit of having a nurse practitioner with a deep background in medical and knowing the right people to get me associated with other doctors. Everyone’s not as lucky as that, but I would say get multiple opinions. It’s best to be positive about it. Being negative about it is not right for you or anything else. Support yourself with family and friends, and be open about it. If I had kept it secret, I feel like I would have had a lot of stuff bottled up inside, it could have sunk me into a depression or something along those lines. So just own it, you have it. Make the best of it. Get that support. Research it … No matter what type of cancer you have. My urologist suggested looking into BCAN. I still have that welcome packet.

If you’re young, use it as an opportunity to spread awareness about bladder cancer because it seems like a lot of younger people tend to share more about their lives because that’s just the way we grow up now. Everything is shared from happy moments to sad moments, and if they could do good to spread awareness, I think that’s a positive thing you can do out of a negative situation.