How an Expert Would Manage His Own Advanced Bladder Cancer: An Update

Curious Dr. George
Cancer Commons Editor in Chief George Lundberg, MD, is the face and curator of this invitation-only column

Genitourinary Oncologist and Researcher, Beth Israel Deaconess Medical Center; Instructor in Medicine, Harvard Medical School

When facing a frightening new cancer diagnosis, some people ask their doctors, “What would you do if you were me?” Here, our Curious Dr. George asks Daniel E.C. Fein, MD, how he would handle his own case of advanced bladder cancer. Dr. Fein is a genitourinary oncologist at Beth Israel Deaconess Medical Center (BIDMC) in Boston, MA, as well as an Instructor in Medicine at Harvard Medical School. (Note: This piece originally appeared in May 2023; now, Dr. Fein provides his updated expert perspective, with new information on preferred treatments for people with bladder cancer.)

Curious Dr. George: Imagine a hypothetical scenario in which, as a non-smoking, very busy genitourinary medical oncologist, you were surprised to experience painless gross hematuria. Rapid subsequent microscopic urinalysis confirmed many red blood cells and some white blood cells. Urine cytology was suspicious for malignant cells, not otherwise specified. A complete blood count and blood chemistry panel were normal. At cystoscopy a sessile mass was found and biopsied, revealing a high-grade urothelial carcinoma. You then recognized a 10-pound loss of weight. The upper urinary tract was normal by imaging studies, but your pelvic lymph nodes were enlarged, and three suspicious lesions were found in your left lung. How would you proceed?

Daniel E.C. Fein, MD: Although I care for many patients with bladder cancer and have been intimately involved in the medical field for some time, I can only imagine how I might react to such shocking news. Why me? What did I do wrong? How should I tell my family? Do I need to take time off work? My mind would be spinning out of control.

I would try to take a deep breath and tell myself that it is likely that I have been diagnosed with an advanced bladder cancer. I would know that although this is likely incurable, there are new treatments available that can help me live longer and improve my quality of life. While establishing care with a cancer treatment team, I would reach out to my primary care doctor and therapist to disclose to them this new diagnosis and ask for the best way for me to manage my mental and physical health while beginning my journey.

Some background: Bladder cancer accounts for approximately 4% of new cancer cases in the US, with around 10% of those presenting with metastatic disease. Most cases are confined to the bladder and can be treated with resections and medicines instilled into the bladder. When cancer invades into the muscle of the bladder wall, patients can be potentially cured using a combination of treatments, such as chemotherapy followed by removal of the bladder, or chemotherapy with radiation. When bladder cancer has spread to distant sites outside of the area of the bladder (such as the lung) they are typically not curable but can be controlled with a combination of medications to help patients live in the range of years.

Before treatment: The approach to treating advanced bladder cancer is changing rapidly, with new approvals of medications and combinations coming out every year. Because of this, I would seek care at a nearby academic center that has experience treating bladder cancer using a multidisciplinary team of urologists, medical oncologists, and radiation oncologists.

I would undergo a biopsy of a lung lesion to confirm this is metastatic bladder cancer. I would direct this biopsy to be sent for molecular testing for gene mutations in FGFR2/3 and for expression of the marker HER2, which would tell me what kind of treatments I could receive in the future. I would also undergo germline genetic testing to see if I was born with a gene mutation that made me more likely to get this cancer and potentially others. I would also ask if I should have any additional imaging, such as an MRI head, as this may be helpful for some patients.

Choosing treatment: Because of how quickly this field is changing, I would ask my care team if there were any clinical trials in my region with new and promising treatment combinations available. As a member of the Innovation in Cancer Program at BIDMC, I have seen firsthand the outstanding care provided to cancer patients on clinical trials and would certainly participate in one if it was right for my cancer treatment and quality of life.

If I thought a clinical trial wasn’t right for me, I would ask if I could be a candidate for the newly FDA-approved combination of enfortumab vedotin and pembrolizumab (EV + P), a combination of a targeted chemotherapy and immunotherapy. Because of a recently published clinical trial, this combination is now considered the preferred first-line therapy for all patients with metastatic bladder cancer.

If I was unable receive EV + P because of other medical conditions (such as severe autoimmune disease, difficult to control diabetes, or severe peripheral neuropathy), I would ask if I could receive a platinum-based chemotherapy combination. Conventional platinum-based chemotherapy (cisplatin or carboplatin with gemcitabine, or dose-dense MVAC) has been the standard-of-care treatment for advanced bladder cancer for many years and can still be an option for some patients if they are unable to receive or decline the EV + P combination. In recent years we would give at least four cycles of platinum-based chemotherapy, and if there is some control of the cancer, switch to a maintenance immunotherapy called avelumab. There is actually another combination of platinum-based chemotherapy with an immunotherapy called nivolumab that was also recently approved based on a clinical trial, but because of how effective enfortumab vedotin plus pembrolizumab seems to be, I generally recommend EV + P first.

What next?: I may have challenges with managing side effects of treatment, coping with my new diagnosis and limited life expectancy, or sharing my experiences with friends and family members. I would seek assistance from a palliative care team and a local cancer support group who can focus on these mental, emotional, and physical challenges to improve my quality of life.

A new diagnosis of cancer, at any stage, can be life changing. If you are going through this, please know that you are not alone and that there are people around the world with and without cancer who have dedicated their lives to making yours better.

Dr. Fein can be reached at dfein@bidmc.harvard.edu or on Twitter at @DFein_MD.

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