Typically in May, which is Bladder Cancer Awareness Month, my organization, the Bladder Cancer Advocacy Network or BCAN, is working feverishly to raise awareness of this disease, one of the most common cancers in the United States, yet one of the least known and understood.  May of 2020  has been very different, however.

Out of respect for those who are working on the front lines as well as also to honor the memory of the nearly 100,000 people in the United States who have lost their lives to COVID19, BCAN’s activities have been somewhat muted this month compared to what they have been in the past.   In lieu of media appearances to raise awareness of bladder cancer to a wide external audience, we have focused more on our own internal community to learn more about what they needed most. Rather than conducting our annual Walks to End Bladder Cancer in 28 cities in 2020, we held one large virtual walk on May 2nd, to connect and honor our bladder cancer community while maintaining social distancing.

To know more precisely what our community needed most, in mid-March, as the pandemic grew, BCAN distributed a questionnaire for bladder cancer patients and caregivers, asking them what they wanted most to know about COVID-19 and bladder cancer.  We were heartened the response to the survey – nearly 150 people responded – but were also mindful of the fact that it was not enough to ask people in the bladder cancer community what they needed to know.  We had to ensure that they got their questions answered fully and quickly.

Connecting patients
To help patients get their questions addressed in a time of social and medical distancing,  BCAN developed a series of regionally-focused webinars that connected patients and their loved ones to bladder cancer experts in their own communities. People could and did watch the webinars in the comfort of their own homes on a computer, a phone, or a tablet. BCAN offered regional webinars because different parts of the United States were experiencing different stages and degrees of the pandemic. Each regional COVID19 webinar featured an academic urologist, medical oncologist, and radiation oncologist, along with a community-based urologist. In addition, BCAN hosted a webinar on the use of mindfulness when dealing with COVID19 and bladder cancer.

Despite our efforts to shift our resources and programming to adapt to the new reality of COVID19, one principal fact that has not changed:  bladder cancer continues, disrupting the lives of men and women who are diagnosed, just as it always has.  According to the American Cancer Society’s annual “Cancer Facts and Statistics” publication, it is estimated that 80,000 people will be diagnosed with bladder cancer this year and more than 17,000 will lose their lives to the disease. People continue to be diagnosed and live with bladder cancer and have often had to make very difficult decisions about how and when they wanted to be treated for the disease.  A frequently discussed concern on our webinars was that a primary treatment for some types of bladder cancer – chemotherapy – could weaken a patient’s immune system to the point of making them more susceptible to contract COVID19, especially given that most chemo is given in a hospital setting and many hospitals across the United States have been inundated with COVID19 patients.[1]

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Addressing the pandemic
No one size fits all, however. As noted in an April 2020 paper on the topic in Oncologist (“A Practical Approach to the Management of Cancer Patients During the Novel Coronavirus Disease”), “Postponing elective surgery or adjuvant chemotherapy for cancer patients with low risk of progression should be considered on a case-by-case basis.” [2]

In addressing the COVID19 pandemic, healthcare workers on the front lines have altered their work, including implementing new hospital procedures from everything from sanitizing and disinfecting to delaying elective procedures.  Many of the medical professionals whom we have spoken with have told us that the “new normal” of bladder cancer treatment may include higher instances of telemedicine and medical distancing, along with possible delays in procedures like bladder cancer surveillance and BCG treatments.

BCAN’s work to serve our community in the time of COVID19 includes partnering with the University of Michigan on a study of patients who have delays in care due to the pandemic, as well as an upcoming webinar on June 8, 2020, featuring experts highlighting what we have learned so far.

No one can adequately predict what will come next. However,  I can confidently say what I know will happen next with the Bladder Cancer Advocacy Network:  we will continue to serve our community in good times and bad while always bearing in mind that bladder cancer does not stop in the time of a pandemic.

[1] American Cancer Society. Cancer Facts & Figures 2020. Atlanta: American Cancer Society; 2020. Online. Last accessed on May 29, 2020.
[2] Al-Shamsi HO, Alhazzani W, Alhuraiji A, et al. A Practical Approach to the Management of Cancer Patients During the Novel Coronavirus Disease 2019 (COVID-19) Pandemic: An International Collaborative Group [published online ahead of print, 2020 Apr 3]. Oncologist. 2020;10.1634/theoncologist.2020-0213. doi:10.1634/theoncologist.2020-0213. [Pubmed][Article]

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