Sandy’s Story: “The scanxiety was always awful.”

Sandy Weicher was focused on improving her health and building a new life with her family in Philadelphia. But what seemed like a routine day suddenly took a turn, leading to a discovery that would alter the course of her life. What followed was a journey filled with difficult choices, unexpected challenges, and ultimately, a new sense of purpose. This is her story:

My story starts at 55 years old, having relocated to Philly from Chicago for my job, with my husband and son. I was finally focusing on what was always my biggest health issue – my weight. I have severe heart disease in my family, including my sister, so I was working hard to get my weight under control. In the weight loss program at the University of Pennsylvania, I went in for my monthly bloodwork and stopped in the ladies’ room on the way out. Looking into the toilet, I saw red. I thought it was blood and started to worry, but then I thought I had probably just eaten too many red M&M’s the night before. Then I remembered I didn’t eat M&M’s anymore.

I called my doctor’s office. She insisted I come in, have a urine screen and then referred me immediately to a urologist. I now know how lucky I was, and that many women, especially young women, can be misdiagnosed for months. This urologist, also a woman, did a TURBT within a week. The pathology came back high grade, non-muscle invasive bladder cancer.

My local community urologist gave me the diagnosis and said I had three options: do nothing, BCG, or radical cystectomy. She told me the treatment plan was my choice. It seemed like a pretty big decision for the patient to be making, so I got a second opinion at UPenn. Dr. Bruce Malkovitz did another TURBT and the pathology came back the same.  He told me I needed to do BCG immediately, explained what BCG was and how the treatment would go. He also explained that it was very treatable and we would take it one step at a time.

My kids were 22 and 18. My husband is 11 years older than me and they always expected him to have health issues first, so they were very worried. I’m the sole breadwinner, so the thought that I could have cancer was terrifying. My husband was one of the first stay at home dads ever back then. We had just moved to Philly for my job two years before that, moving my son after his sophomore year of high school, so we had had a lot of turmoil. When I got to UPenn, I trusted Dr. Malkowicz and did what he recommended.

I put a promotional job move to Connecticut on hold to do the six weeks of treatment. I am so very lucky that I had both an old boss and a new boss who were so understanding. They are two of the most amazing women I’ve ever worked for.

At UPenn, treatment was challenging. Due to the BCG shortage, you had to have a urine screen before the treatment. I would pee in a cup and then my husband and I would wait for two to three hours in the very packed and chaotic urology waiting room while my urine screen came back. The waiting was excruciating, especially the first few times when I was so anxious about how the treatment would go.

The BCG induction would then happen mid-day. I found it very uncomfortable but not painful, and I was able to hold it in for the full two hours. I was very lucky because I was an executive and could work from home in the afternoon.

While I know now that my side effects weren’t as bad as many people’s, they were challenging for me. I had constant burning when urinating, but my biggest side effect was incontinence. I was already incontinent from pregnancy and carrying excess weight in my abdomen most of my life. The incontinence got worse every week of BCG.

BCG treatment was when I started experiencing conflicting emotions. I was so happy that I didn’t need chemo or radiation – BCG seemed like a walk in the park compared to those options. But BCG still wasn’t easy. It was both a physical and emotional struggle. In addition to the burning and the increasingly severe incontinence, cleaning the toilet with bleach every time was not fun. I wouldn’t leave our apartment in the afternoon because I didn’t want to carry bleach around, but many people don’t have a choice due to their work schedules. I was anxious and overwhelmed.

I had one round of BCG because that’s all the BCG UPenn had to give me. Dr. Malkowicz released me to move to Connecticut as long as I agreed to come back for a TURBT about four to six weeks after the last BCG installation. I trusted and respected him. Dr. Malkowicz told me that if the cancer came back, I would have to have my bladder removed. He told me a story about a female FBI agent who had her bladder removed, and after the right recovery time, she was back in the field catching criminals. If she could have a great life, I could too. I’ve hung on to this story many times to stay optimistic.

Dr. Malkowicz referred me to Dr. Taylor at the University of Connecticut, who he said was exceptional. Later in my journey, I would hear about a technique when facing a major life challenge with your spouse of using a code word when you get very overwhelmed. I made my code word “FBI.”  The first time I used it, my anesthesiologist really freaked out! 

We drove back to Philadelphia, all five hours through NYC, for the TURBT.  I was miserable, so we decided to scrap our plans to stay overnight and just drive home afterwards. I remember miserably sleeping in the car through a lot of traffic, but I wanted to be home and not in a hotel. My pathology came back all clear a week later and I was extremely relieved.

A couple of months later, I was very lucky and happy to be at the University of Connecticut.  Dr. Taylor told me that my pathology indicated two rounds of treatment, so I had another six weeks of BCG. I was at a brand new job and didn’t go into the office on Fridays. I missed my new Senior Vice President’s first leadership retreat. I was already anxious about starting a new job, and this just increased it. The only good part was that UConn did not require a urine screen before administering treatment, so the BCG installations were normal appointments. I would have treatment in the morning and work from home in the afternoon. Another TURBT after the last treatment again was all clear, so I finally started to breathe a little and moved into the infamous “scanxiety” stage.

I am a rule follower. It’s in my DNA. So, I made every appointment exactly on time and showed up for it for the next seven years. First every three months, then every six months.

The scanxiety was always awful. I could compartmentalize in between, but then the fear of something happening to me would flood back about a week before every appointment. The “what ifs” were paralyzing. I would think back to Dr. Malkowitz’s FBI story and remind myself I wasn’t going to die. I never missed or was late for a cystoscopy. I hit five years and thought I had it beat but was still vigilant. And in year five, my scans moved to once per year, which was absolutely terrifying. I had been cancer free for five years so I told myself my cancer story was over.

In 2021, I retired from my 30 year career and relocated to New York City. I had been NED for 7 years after two rounds of BCG.  As with any survivor, a recurrence was my biggest fear.  What would happen if the cancer came back?  Would I have to have my bladder removed, would another round of BCG be enough? Six months after I began my much-anticipated retirement, I had my yearly follow up. I had an appointment with my brand new urologist, Dr. Scherr, at Weill Cornell. I had researched Dr. Scherr, but had never met him. It was “supposed to be” a run of the mill follow up – I was 7 years NED.  When I met Dr. Scherr (in the cystoscopy suite), he even said this should be a routine visit as he had read my chart and could see I was religious about my surveillance schedule.  

Less than 10 minutes later, the very lowkey and kind Dr. Scherr tells me he sees a tumor;  he’s going to biopsy it, then burn it out. I love Dr. Scherr and will forever appreciate that he saved and changed my life, but really, no anesthesia? I’ll always be super annoyed at how much pain that was – even though, like he said, it will just be 30 seconds!

The pathology came back High Grade, now with micropapillary features.  Dr. Scherr wanted to do another biopsy 30 days later to see how aggressive it was this time.  30 days later, it was already showing in the Lamina Propria.  And this was when my life changed completely. 

Here I am facing a life-altering decision with a brand new doctor. Who I’d researched, but didn’t know. My worst fear had come true, and I didn’t even have a relationship with my urologist yet.  Dr. Scherr recommended radical cystectomy and explained what it was. I said I wanted to schedule the surgery for six weeks later, as we had our first post pandemic family vacation coming up. Dr. Scherr asked me where we were going and I told him Bermuda.  He then said, “Mrs. Weicher, I’m pretty sure Bermuda will be here in 6 months. But if we don’t do this right now, I cannot make any guarantees”.  Needless to say, my husband scheduled the surgery right there.

The next step was the explanation of the three diversion options. But then Dr. Scherr said that since he didn’t know me, I’d have to help him figure out his recommendation.  He asked if I had any incontinence, and I started laughing, which kind of threw him. I explained that my incontinence started when my 10lb baby boy sat on my bladder for most of my pregnancy. It got worse during BCG and follow up cystoscopys.  And, I shared, just the past weekend,  I had left a restaurant a 15 minute walk from my apartment without going to the ladies’ room. I did not make it home. And unlike Dion Sanders, I wasn’t always wearing Depends!

Dr. Scherr said that the incontinence ruled out a Neo Bladder, and he recommended the Indiana Pouch. He told me that in his opinion, I was too young and too healthy for a bag. He was very honest that the surgery and recovery were definitely tougher than for an Ileal Conduit. But he explained that he was making this recommendation because I was only 63 and would live another 20 years, and he wanted me to have the best daily quality of life for those 20 years, which was definitely worth the tougher surgery and recovery. Dr. Scherr sent me to BCAN to learn about diversions and to meet other survivors. 

My first thought when I found BCAN was why have I not been referred here before! I met the amazing Karen Godfrey, a wonderful Survivor to Survivor volunteer, who told me that after two years, the IP runs itself. She was about 14 years in at the time. She was honest, caring, and supportive. And I now know she was right about the IP.  Karen has become a dear, dear friend. The first of many silver linings. 

I again got a second opinion. I was fortunate to be on COBRA from my job and had a benefit that provided a second opinion. The head of Urology at Boston College completely agreed with Dr. Scherr’s recommendations, and we moved forward. 

I’m not receiving any treatment now. I had my cystectomy three years ago and am now under surveillance. My journey is what led me to start the Indiana Pouch Support Group, which is absolutely the biggest silver lining of my journey. I’ve found purpose in bringing survivors with the Indiana Pouch together with this group, and I get so much more back than I give.

20 Years of Impact: 20 Voices of BCAN

For two decades, the Bladder Cancer Advocacy Network (BCAN) has been a beacon of hope, support, and advocacy for patients and their loved ones. As we celebrate 20 years of collective progress, we honor the voices that have shaped this journey—those who have faced bladder cancer with resilience, and those who have provided unwavering support.

Through our 20 Voices initiative, we are sharing powerful personal stories that highlight the impact of bladder cancer and the strength of our community. These voices reflect the challenges, triumphs, and hope that define BCAN’s mission for better todays and more tomorrows for all those impacted by bladder cancer.