Colleen’s Story: “I told myself, Okay, I’m going to live in the moment the best that I can and I’m not going to let this stop me.”

Battling through her bladder cancer diagnosis as a young mother, Colleen found hope and resilience, ultimately embracing a transformative therapy. Amidst her journey, family, friends, and the support of BCAN’s invaluable resources became pillars of strength. This is Colleen’s story:

I was diagnosed with bladder cancer in May of 2022 at 36 years old. I was seven months postpartum with my third child. I had a healthy baby girl in October of 2021. Towards the end of my pregnancy, I had some blood in my urine. My doctors and I presumed this to be associated with cervical change as I neared my delivery date.

I began to work out again around April. I’m a runner. One day, I decided to do a few crunches after I ran and then went to the bathroom and saw bright red blood in my urine. I called my general doctor and explained the situation. They said, “Well, it only happened once. It’s probably nothing.”

I was then told, “But if you would be more comfortable, you can come and do a urinalysis.” So, I went in and did a urinalysis, but at that point, I had no more visible blood in my urine. My urinalysis showed trace amounts of blood. They wanted me to wait two weeks and come back to repeat the test. I confided in my parents who thought it was best if I went and saw a urologist. I did exactly that and she ordered a CT scan. During the appointment, she said, “I’m not expecting to find anything scary. There’s such a small chance given your medical history, age, and gender, but we need to test to rule things out.”

On May 6, 2022, I had my CT scan and it showed that I had at least four or five tumors in my bladder, one of which was four centimeters. Upon seeing my CT scan, the doctor called me and said, “This is really unusual. I’m not going to sugarcoat this. I’m concerned.” She proceeded, “I had planned to do an in-office procedure. I can still do that, but at the end of the day, these are going to have to come out.” She was able to quickly schedule a cystoscopy that I had just a few days later, on May 9.

It all seemed to move very quickly. My CT scan was on Friday, and I had my first TURBT (trans urethral resection of bladder tumor) on Monday. My doctor said she removed everything that she could, but that there was a good amount of tumor in there. After my pathology confirmed cancer, we discussed my options and considering my situation, she referred me to the University of Chicago Medicine to continue my care.  She trained there and knew I would be getting the best treatment options possible.  She called the team there and made sure they were prepared to take immediate action.

My pathology showed non-muscle invasive high-grade bladder cancer. I had a second cystoscopy, a blue light procedure, done at UChicago Medicine. The pathologist took another sample and again, non-muscle invasive. To this day, the pathology shows that it’s non-muscle invasive.

On June 20, 2022, I had a radical cystectomy. I planned to be as aggressive as possible in my treatment. As they began surgery, even though it didn’t show on the CT, they found a lesion on the outside of my bladder. At that point, we knew it was more advanced than we suspected.  My staging chest CT also showed two small lung lesions later confirmed as lung metastasis.

I received four rounds of dose-dense MVAC and it made me extremely ill. It also didn’t shrink my lung lesions as my oncologist, Dr. O’Donnell, hoped to see. After nearly every one of my dose-dense MVAC treatments, I was hospitalized. I’ve certainly had the support of a therapist and medications to help me from an emotional standpoint.

With the treatment I receive now, PADCEV, I am doing very well.  Most importantly, all my visible lesions responded and are gone. I can run four miles later on treatment days and I can live a completely “normal” life. I get PADCEV two weeks on, and one week off down at UChicago Medicine.  PADCEV is now available for first-line treatment in metastatic bladder cancer patients and I am so glad others will be able to benefit from it immediately upon diagnosis. It has given me hope.

My surgeon at UChicago Medicine, Dr. Agarwal, gave me a copy of BCAN’s publication, Bladder Cancer Basics. He used the pamphlet to educate me on the different types of treatment options that I had. We talked about the different types, whether it was muscle invasive or non-muscle invasive, and the different available diversion options. We pulled out the pamphlet every time we spoke.

I can’t thank my husband, kids, family and friends, doctors and nurses, enough for their support.  My aunts, uncles, and cousins came in from out of town to help my husband with all three kids while I was unable to.  My parents have helped me navigate the complexities of this disease. I am so fortunate to have a whole community surrounding me and my family.

I spent a lot of time on the BCAN website reading the patient stories. It brought me some comfort to hear all the new treatment options, and to hear what other patients had been through. I reached out to BCAN to talk to somebody who had had a neobladder, which is what I have. I found there weren’t a lot of women who have this disease talking about it and I want to change that and be a voice and resource for others.

I would tell other bladder cancer patients that it’s okay to be sad and to spend time mourning your diagnosis. Two things can be true, you can mourn and find joy every day. I told myself, “Okay, I’m going to live in the moment the best that I can and I’m not going to let this stop me,” and honestly, my kids and nieces and nephews keep me going.  I hope to model for them that they can and will do hard things.