John’s Bladder Cancer Story: “When is this Going to be Over?”

John is a 74-year-old bladder cancer survivor who was diagnosed in 2005. Over the years, John had quite a journey and now shares his story.

Hard to wrap my head around the news

Being diagnosed with cancer is a hard pill to swallow and can catch you off guard. Before I was diagnosed, I noticed blood in my urine. I did a lot of running and noticed after long runs that I would get a little blood. My concern was not too great because I went online and read up on it, and it seemed to be exercise-induced. After it kept happening, I finally went to my doctor and was referred to a urologist. The urologist did a number of tests; they came back clear. It was not until I had a cystoscopy that the tumor was found. All this was new to me, and I could not wrap my head around the news.

My bladder cancer kept coming back

I went in for my TURBT procedure for the doctors to remove the tumor and have it sent out for analysis. This confirmed it was, in fact, bladder cancer. Because the tumor was not considered aggressive and had not spread, the doctor felt there was no need for further treatment. I was informed that there was a high likelihood of recurrence, so I would need to come back every three months for checkups. Two years went by, and I went in for my checkup to learn that the cancer had returned. In my case, my bladder cancer would return, what seemed like, every two years. The tumor(s) were removed each time, and I was told I was cancer-free. When I would go back for my routine checkups, it seemed like it would be the same result each time I reached the two-year mark. The last time the cancer returned, it was more aggressive than before. That is when we decided I would start BCG treatments.

Here we go again

Once I started the BCG treatments, they appeared to be working. I went into another remission, and there was no evidence of disease in my bladder. Two more years went by, and it was back. The cancer had advanced to my urethra and became more troublesome. After two more rounds of BCG induction and a trip to Johns Hopkins, my cancer improved but came back again about a year later. 

The big decision

I had a decision to make. Should I have my bladder removed during a radical cystectomy or keep my bladder and start chemotherapy? My doctors let me know that, in my case, keeping my bladder was risky for long-term survival. My urologist speculated that survival past two or three years was unlikely without a cystectomy. I went back to Johns Hopkins for a second opinion, and they agreed with my first doctor. I wanted this to be over and back to some sense of normalcy, so I chose to get a radical cystectomy. Survival is what I wanted.

After much deliberation, I chose to receive my cystectomy at Johns Hopkins solely based on how experienced the surgeon, Dr. Mark Schoenberg, and his team were at performing this procedure. When removing my bladder, they also found cancer in my prostate and urethra. So, I was also diagnosed with prostate cancer. Because the cancer was in my urethra, I ended up with an Indiana pouch.

Getting used to my new normal

The Indiana pouch took some getting used to. At first, you must time your bathroom breaks and leaks do happen, but eventually, you and your body get used to a new normal. I also had had issues with UTI’s, which were quite frequent before I started chemotherapy, but now only occur about once a year.  

The cystectomy went fine, but I got an infection in the wound, so I had to stay in the hospital for nine days. After the surgery, because of the cancer found in my urethra, I had to get my urethra checked. After eighteen months, they found cancer cells and I underwent a urethrectomy at Hopkins. At that point, I thought I was home free. You would think they got all the cancer, but that was not the case.

When is this going to be over?

Almost three years after the urethrectomy, I started to get intense pain in my pelvic area, and I was concerned. I had thought I was out of the woods. When is this going to be over? I made an appointment with my doctor. They ran a number of tests, and everything came back normal. I also saw a proctologist, gastroenterologist, and urologist, but no one could find anything. The only thing that relieved my pain was taking a hot bath. Finally, I decided to see a pain specialist, and he insisted that we do one more scan, and there it was—a tumor. The cancer had metastasized to my pelvic region. I do not know if he looked in a different place than the other doctors, but it was there. The tumor was quickly biopsied to confirm the scan and I again went to see an oncologist.

While I did not welcome the news that I had cancer again, I thought that with a concrete diagnosis, I would get the treatment I needed. So, I went through another round of treatment with the best of hopes. 

My great oncologist, Dr. Dipti Patel-Donnelly, prescribed me pain medication and suggested they start me on radiation and chemotherapy to shrink the tumor as fast as possible and alleviate the pain. The radiation consisted of 23 cycles, and it was followed by six months of a more aggressive chemotherapy regimen. I was so happy when I noticed the pain was starting to subside, but the chemo treatments did a number on my blood. I had to have a couple of blood transfusions. They reduced my chemo treatments. Even though this was tough for me and my body, it was great to hear that this treatment put me in remission.

When I first got diagnosed with the recurrence, the oncologist gave me a piece of paper; it said that my chances of remission were 75% and recurrence would be expected in 11 to 14 months. That was in 2014, and I am still here. I was ready to get my life back. I had gained weight while on chemo, so I lost the extra weight and started walking, exercising, and playing softball again. I took a trip to the Galapagos islands with my son. My life looked to be getting back to normal. 

Good news every six months

Over the last few years, I have gotten used to living my life, and I keep getting good news every six months when I get new scans. But I would not be telling the truth that the fear of my cancer returning does cross my mind. My journey began at 56 and I am happy to say that I have made it to 74.

When you are going through a battle with cancer, you must have a support system. I am happy that my wife and sons were there for me at every step. It is also essential to do your research and get a second opinion. I am grateful that I found BCAN and that reading other patients’ stories has helped me on my journey. 

If you leave with anything from reading my story, it should be to make sure you advocate for yourself. Ask questions, and do not be afraid to go with a doctor you feel has more experience and knowledge. You are your own advocate.