Bladder cancer affects more than 600,000 people in the U.S. alone. However, many people didn’t even know having bladder cancer was possible until their unexpected diagnosis. For others, getting a proper diagnosis may have been difficult. The Bladder Cancer Advocacy Network (BCAN) is working to change this by spreading awareness and providing a wealth of resources and education.
Since May is Bladder Cancer Awareness Month, we sat down with Stephanie Chisolm, Ph.D., BCAN’s Director of Education and Research, to take a closer look at bladder cancer — who is at risk, what steps can help prevent it, and how BCAN is changing things in the bladder cancer community. Check out her interview below.
What is BCAN?
The Bladder Cancer Advocacy Network was formed in 2005 by John and Diane Quale. After John’s bladder cancer diagnosis in 2000, the Quales were frustrated by the lack of funding for bladder cancer research as well as the lack of resources and reliable information for patients. They found a lot of information about other cancers but very little specific to bladder cancer.
So they started BCAN. They spoke to John’s doctor, who encouraged the effort. Later, they went with him to the American Urological Association, where BCAN’s very robust scientific advisory board began. Sadly, John passed away in 2008. However, thanks to its research and patient community, BCAN can continue John’s work on behalf of all bladder cancer patients.
The Work the Bladder Cancer Advocacy Network Does
Most of the patients we speak to say “I had no idea you could get cancer in your bladder until the doctor gave me the diagnosis.” It’s not very well talked about. BCAN provides advocacy, we provide education and support for the patient and family community, and we support research. This year alone, we’ll be giving away almost $1 million in research funds.
That includes two Innovation Awards for experienced investigators, each of which amounts to $300,000 distributed over two years, and five Young Investigator Awards. The Bladder Cancer Advocacy Network designed these grants with the goal of helping researchers get started on a path of bladder cancer research and expertise. It’s really rewarding to see that some of the recipients of these grants have risen to the top. Now, they’re seen as key opinion leaders in the bladder cancer clinical and research space.
Advances in Research
BCAN also received private funding that allowed us to start the Bladder Cancer Genomics Consortium, which has completed its first clinical trial, in which the tumors of 200 Bladder Cancer patients were genetically typed, allowing researchers to recommend specific trials based on genomic profiles. We now have a biobank of over 200 tumor specimens, urine specimens, and more. This will help us better understand what genetic mutations make people more susceptible to bladder cancer. It may also help us determine what types of medications might benefit people with those genetic mutations.
This has the potential to provide more targeted and specific treatments, as opposed to the “shotgun” approach of throwing every kind of treatment at cancer, much of which won’t work and has the potential for devastating side effects.
Why is Bladder Cancer Awareness Important?
Spreading awareness about this disease is crucial for both doctors and patients to ensure people are able to get a proper diagnosis.
The average age for developing bladder cancer is in the mid-70s. Smoking is one of the biggest risk factors, and males tend to get bladder cancer more than females. However, if you are not in these known high-risk groups — say you’re a 50-year-old woman, experiencing hematuria (blood in the urine) or urgency and frequency, or you’re a man experiencing urgency and frequency but not hematuria — your first thought will likely be that it’s simply age-related. You won’t necessarily go to the expert who’s going to make that diagnosis right away. Men may find themselves being treated for prostate issues, while women are often prescribed multiple rounds of antibiotics by a gynecologist. Unless you’re seeing a urologist, a doctor may not even consider bladder cancer as a possibility.
Additionally, no simple blood test exists currently to diagnose bladder cancer. Doctors can only diagnose this by using a cystoscopy, which is a process that involves inserting a thin fiber-optic camera into the urethra to look visually for cancer. Most general practitioners and gynecologists don’t have a cystoscope in their office. This is among the reasons that even though women are diagnosed less frequently than men, their prognosis and outcomes tend to be worse.
Bladder Cancer Advocacy Network Support and Resources
One of the things I think is really important for people to understand is that BCAN resources are available 24/7. So when someone has an “oh my god” moment at 2 a.m. because they have been diagnosed with bladder cancer and the reality of that is sinking in, they can visit BCAN.org where they will find:
- Plain-language explanations about their diagnosis and the treatment options
- A variety of expert videos (with transcripts) in which doctors discuss particular aspects of bladder cancer, always updated with current information
- Links to more advanced information for those who wish to research their condition more fully
- Print materials such as the free Bladder Cancer Basics Handbook
- Tips for caregivers, developed by a group of caregiving volunteers
Bladder Cancer Survivor-to-Survivor Network
BCAN also has a group of very well-trained volunteers who are part of our survivor-to-survivor network. For example, if your doctor recommends bladder removal, which is a pretty significant surgery, you might wonder “what is my life going to be like?” Most people don’t think you can live without your bladder, but you can. It’s just different; what we call “the new normal.”
With this resource, BCAN pairs people by gender, age, or even interests. You can talk to someone who has gone through the same procedure you’re about to go through. Maybe you’re contemplating whether you want an ileal conduit or a neobladder, and you want to talk to someone who has experience in living with that type of urinary diversion in order to help you make the decision.
This program is extremely popular. We have a phenomenal group of volunteers who really make a difference by sharing their experience and the questions they wish they had asked when they were going through their diagnoses and treatments.
Bladder Cancer Risks and Prevention
The number one risk factor that contributes to bladder cancer is smoking. We always think of smoking and its association with lung cancer. However, all of those chemicals still get circulated in the rest of your body. Then they’re filtered through your kidneys, and they sit in your bladder. Stopping smoking reduces risk and leads to improved outcomes for those who are diagnosed.
However, plenty of non-smokers are also susceptible to bladder cancer. Toxins in the environment, such as those found in the water supply or certain occupational hazards, may cause bladder cancer. Also, veterans and first responders tend to be at high risk.
People who have wells, for example, maybe at higher risk, due to arsenic levels sometimes present in well water. In certain geographic areas, testing your well may help prevent exposure to dangerous chemicals that can lead to bladder cancer.
Firefighters also tend to have elevated rates of bladder cancer. This may be due to chemicals found in smoke, which can soak into their apparatus and turnout gear. The spread of bladder cancer awareness has led to changes in the methods and frequency of washing firefighter gear to help protect firefighters from toxins.
Challenges Bladder Cancer Patients Face
Bladder cancer, like all cancers, comes with its own set of challenges, including:
- A very high rate of recurrence, meaning patients must continue to monitor their conditions with regular cystoscopies. This can be time-consuming, stressful, and invasive.
- A global shortage of BCG, an attenuated bacterium used in bladder cancer treatments, can sometimes make treatment difficult to find.
- Additional stressors due to the COVID-19 pandemic, such as the need for careful distancing when patients have to visit hospitals repeatedly for treatment.
- For many patients, learning to live without a bladder. If your treatment involves bladder removal, whether you end up with an Ileal Conduit, a Neobladder, or an Indiana Pouch, you’ll need to adapt to your new normal.
Fortunately, these challenges can be overcome! On the BCAN website, you’ll find stories from other patients like Carlos, Anne, Ron, and many others who live active, robust lives doing everything from surfing or ballroom dancing to winning Olympic medals despite their bladder cancer diagnoses.
The 2021 Bladder Cancer Summit for Patients & Families is being held virtually on Saturday, October 9, 2021. You can register for the free Summit and be in the Zoom-room. You’ll learn more about bladder cancer and meet many others who really do know what you are going through.
Additional Bladder Cancer Resources
- The Bladder Cancer Matters Podcast: This podcast features patient advocate Rick Banks, a bladder cancer patient who has been very engaged in bladder cancer research. Download the podcast to hear him discuss a wide range of bladder cancer topics.
- Treatment Talks: this series of webinars features nationally-known experts discussing different treatment options, as well as patients who have experienced the treatments.
- The Cancer Care Community
- The American Urological Association
- The American Society of Clinical Oncology
For more information on bladder cancer treatment, research, and the important work BCAN is doing in the bladder cancer space, visit bcan.org.
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