Ann’s Story: Bladder Cancer Runs in the Family

Bladder cancer runs in the family

My bladder cancer journey started in 2019 when I was diagnosed with stage one non-muscle invasive bladder cancer. However, this was not the first time I heard about this disease. In 2014, my father was diagnosed with bladder cancer. He spent his career working with rubber and dyes, had been a smoker for decades, and enjoyed a robust bourbon now and then. Sadly, he also ignored blood in his urine for a very long time. By the time he sought treatment, his cancer had metastasized to several organs, and he passed away at home in 2015, at age 78.

Before my diagnosis, there was a little bit of blood in my urine every day for one week, but nothing that struck me as alarming. I was 58 years old, still having my period, thinking that I would never go into menopause.  When that little bit of spotting appeared every day for a week, I called my primary care physician, who saw me that day.

Getting my diagnosis

Everything happened so quickly after my initial appointment. In a matter of eight days, I had a CT scan, an MRI, a cystoscopy, and a TURBT surgery. Based on the number of tumors and their size, I may have had the tumors for years. “How can this be?” I was never a smoker, rarely drank alcohol, and never worked where I could have been exposed to any chemicals. So why is this happening to me? I’ve learned that sometimes our cells simply mutate and become cancerous.

A frightening experience for my family

My husband is 11 years older than me, and my diagnosis left him in complete shock. He was very quiet and has remained quiet through the entire treatment process. He was nervous, did not know how to help, and was terrified that I would die. Because he is almost a dozen years older than me, we always assumed that he would probably die first. Now we both wondered if I might die before him.  We have three children, and they were frightened. They are young adults, but the thought of losing their mother to cancer was terrifying, especially since bladder cancer is what my dad died of. Would they one day face a similar diagnosis? A third generation with bladder cancer?

My dad was a smoker, and one of the doctors informed me that even though there is no definitive evidence that secondhand smoke is directly linked to bladder cancer, he thinks that could have happened in my case. I was always around my father and was constantly exposed to his cigarette smoke.

I did not know what to expect during my first cystoscopy and found myself unusually nervous. Now that I am almost three years into my treatment plan, I have had many cystoscopies, and find them to be a routine part of healthcare. For my female friends, cystoscopies are like a deluxe Pap smear. During my recent procedure, the urologist asked if I wanted to see what they were looking at, and of course, I said yes. On the monitor were tiny bubbles that looked like champagne. Much to my surprise, the urologist told me it was the urine coming down from my ureter into the bladder. Fascinating!

I ended up having two TURBT procedures. The first took place in Southwest Florida where I live. I had seven tumors removed, two of which were very large. The surgeon could not understand why I did not have any symptoms sooner because he was sure they had been there for quite some time.

Discovering MD Anderson

With the urging of my sister, I got a second opinion from MD Anderson Cancer Center in Houston Texas, and I am glad that I did. It is one of top places in the world to go if you have cancer.  The staff there are used to people coming from other states and countries, which made the records transferring process easy.

I had a terrible experience coming out of the surgery after my first procedure in Florida. I had a lot of cramping, and I was nauseous. I was dizzy and it was awful. At MD Anderson when they said, “We really want to do this procedure again,” my heart sank, thinking, “Oh, I had just gone through these nine days prior, and it was an awful experience. “There, I woke up ready, absolutely pain-free. They had already preempted me with anti-nausea medicine. I felt wonderful.

After my second TURBT, the urologist at MD Anderson was able to better define the state of my bladder cancer. My local urologist said that most of the cells were high grade, mostly aggressive, and the second physician felt my cancer was made up of mostly low grade cells, which are less aggressive. That was great news. I returned home to Southwest Florida, and two weeks later, I started my six weeks of BCG treatments.

For me, the side effects of BCG are cumulative from week to week. The first week I experienced some mild burning. The second week was a little more intense.  There is some tenderness and irritability in your genitals for a day, and then by the third week, there is more pain, but nothing that I cannot endure.

“I drew the lucky card”

I feel like I drew the lucky card in terms of a cancer diagnosis. Dealing with my cancer felt easy compared to what other people have to go through for other cancers and stages. My tumors were high up in my bladder, close to where the ureters are connected to the bladder. I wanted the BCG to be focused up there, not just in a seated position where I picture most of the liquid sitting down on the bottom of your bladder. I want it to be splashed all over. I do not roll constantly during the treatments, but I change my position every few minutes for two hours. Sometimes I feel like a rotisserie chicken!  I can put pillows under my hips to try to get that liquid up into the top of my bladder. If that is all I have to do for two hours, aren’t I fortunate?

“Like a girls’ sleepover”

I was also lucky to have my sister and a friend with me at every step of the way. My husband expressed how it was difficult for him to go to these appointments with me and I completely understood. I did not force him to go, but I did leave the door open if he ever wanted to. I am so thankful my sister and friend flew to Texas with me. I call my sister the “queen of research” as she was prepared with lots of questions and took excellent notes. My girlfriend is a breast cancer survivor, so she understood the world of cancer care. The three of us spent nine days in Texas, and it felt like a girls’ sleepover. We shared a hotel suite and while I was busy during the day with all kinds of tests and scans, the two of them had each other for company. They explored the Houston restaurants and museums, and then we would convene every night and watch movies. They made my cancer journey the best possible experience for me.

The importance of a second opinion

Having a great support system is very important when you are battling cancer. It is crucial that you put yourself in the best possible hands and get a second opinion.  A second opinion gave me confidence that the treatment I was receiving locally is exactly the treatment protocol I would receive at a top cancer center. I recommend that patients research their doctors. There are doctors that are on the cutting edge of clinical studies. If your cancer is at a later stage, make sure that your doctor is willing to share information with other doctors around the nation to ensure that you are getting the best possible care that you can.

When I went to MD Anderson for my second opinion, I was introduced to their free lending library, which was loaded with brochures and books on various cancers.  Patients could take brochures and borrow books, mailing them back in pre-paid envelopes whenever they were finished.  I found the most helpful, concise brochure called “Bladder Cancer Basics.”  It was printed by BCAN! I have referred to it regularly, especially in early months following my diagnosis. I follow them on social media, listen to their podcasts and donate to the Walks to End Bladder Cancer.

Medical assistants are the unsung heroes

Discovering you have bladder cancer can be a shock but having good support network and great doctors can make all the difference in the world. Many of us who have received a diagnosis of bladder cancer will have instillation of BCG for the rest of our lives.  Those procedures are done by medical assistants, the unsung heroes of every urology office.  These dedicated people (usually women) are handling toxic chemicals, gently emptying bladders, and using a catheter to fill bladders with this amazing solution that makes the bladder irritated, resulting in a 50% reduction of bladder cancer recurrence.  This preventive procedure is both amazing and simple. I admire and appreciate the medical assistants in my own urology office for mastering this technique that is giving me comfort and reassurance that I am doing everything I can as a patient to keep bladder cancer from returning.