Melanie’s Story: I Was Shocked to Learn I Had Bladder Cancer

Although I worked in healthcare for 30 years as a genetic counselor, Melanie was shocked to learn that she had bladder cancer. She told BCAN:

In 2018, a year before my diagnosis I was having heaviness of the pelvic floor that prompted me to schedule an appointment with my doctor.  She reassured me by a pelvic exam that it was likely fragile vaginal tissue.

By 2019, I was doing a lot of bike riding because I was preparing to do the Five Boroughs ride in New York City.  For the first time, I noticed pink on toilet paper which I attributed to fragile tissue and bike riding. When it occurred again, I made an appointment to see my doctor who ordered a urinalysis finding microhematuria.  Because the urine culture was negative and because I had never had a urinary tract infection in the past, she advised doing a CT scan.  On a Friday evening I received the call that no one wants, saying, “You apparently have bladder cancer.” The doctor did not tell me details at the time, but the tumor was close to my ureter and because of that, it had caused hydronephrosis, a fluid retention in the kidney, easily seen on CT.  All I could think was “How could I?” The truth was, I did not know anything about bladder cancer.  I learned a great deal of genetics, but I chose to ignore learning about the genetics of cancer.  I think I was afraid of it. 

Learning I had bladder cancer, I thought, “I’ve gotten regular checkups. I have been a health- attentive person all my life without health problems.” I was a smoker during my college years however and always wondered if “this could catch up with me some day.” 

That Monday I went in for my appointment, and I was told by the urologist that I needed to do a cystoscopy to confirm the presence of a tumor.  The cystoscopy, which was painless, identified a 2 x 2 cm tumor that resembled a coral reef.  A TURBT was scheduled to remove the tumor.  Afterwards, the, the surgeon came out and told my husband that he was “concerned about how deep the tumor went and I don’t want to perforate her bladder.” “I think you’re going to need to have your bladder removed.” I then decided to get a second opinion. I met with urologist, Dr. John Gore at the University of Washington. That was the hospital I worked at for 20 years and I felt comfortable because I knew the level of care they provided.

Dr. Gore confirmed that I did need a radical cystectomy. He said, “Unfortunately, I do not think you have a choice. You need the radical cystectomy because of the location of the tumor.” He gave me a packet of BCAN resources for me to read and I ended up joining the BCAN Inspire community. The Inspire group of BCAN members has been invaluable.  Hearing from women with the same muscle-invasive bladder cancer and ileal conduit has been reassuring – and helped me feel supported and not alone.

Before the radical cystectomy I was treated with neoadjuvant chemotherapy After chemo, the surgery went very well, and I was back to my regular life within four to six weeks.  I decided to have an ileal conduit because I felt like I wanted to do something that would get me back to a regular lifestyle quickly.  I did not want to have a neobladder where I was going to have to train it to enlarge, use a catheter and risk a greater number of complications.  I felt like an ileal conduit would be just fine. Currently, I am doing well with having a bag. It was not a very difficult decision for me, but I imagine that it is for those who have been in a position to try to save their bladder.   

Going through a bladder cancer diagnosis, chemotherapy and a radical cystectomy was not easy. There were times where I felt like I wanted to keep the news to myself because I did not want my family and friends to worry about me but having their support has been everything. A friend who had cancer gave me lots of supplies and tips for when I lost my hair (during chemo).  I had great support from my husband, who was going through prostate cancer at the same time. We would jokingly fight about whose cancer was worse; we were each other’s support system.  And still are.

I now get scanned every three months to check for metastasis.  Everything related to having bladder cancer is still new for me, so I am taking it one day at a time. To someone going through this anew, I’d say, try not to add unknown fears to a bladder cancer diagnosis. The path will unfold. Be sure to ask questions when they come up.  The bladder cancer community is in this with you if you need us.