Patient Advocacy Leader Shares Advice for People Living with Bladder Cancer

In 2018, an estimated 81,000 adults will be diagnosed with bladder cancer in the US. That’s roughly 200 people diagnosed every day. Fortunately, the landscape is dramatically evolving. Today, there is an increasing number of treatment options, as well as support groups offering educational resources and services for both patients and caregivers.

It’s important for stakeholders across the medical and patient community to collaborate and raise awareness regarding bladder cancer. That’s why we asked Stephanie Chisolm, PhD, Director of Education and Research at the Bladder Cancer Advocacy Network (BCAN) – an organization that does important work supporting patients and caregivers – to share her advice for people living with bladder cancer.

What is the most important step a patient should take when he or she is first diagnosed with bladder cancer?  

Stephanie:  The news “you have bladder cancer” can come as a complete shock. Establishing open communication with your medical team is paramount. You’ll suddenly meet doctors, nurses and counselors who may overwhelm you with tons of medical information and ask you to take a number of different tests. The important thing at this point is to take a step back and recognize that the medical team is here to help you. You are in control. Ask them to slow down, if needed, and let them know how you’re feeling with the information they’re sharing with you. Also, always ask questions if you don’t understand.

I recommend writing a list of questions before you go for your appointments and bringing a friend or family member to take notes on what the doctor says. Questions you can ask include: What type of bladder cancer do I have? What are my treatment goals? What if my cancer grows after the initial treatment; can we have a plan in place? Are there new or different ways to treat the type of cancer I have?

If you are new to bladder cancer and want to learn more, check out the BCAN page Newly Diagnosed.

After the discussion about the initial diagnosis, how can patients understand their treatment options and be prepared for the next steps?

Stephanie: You and your doctors will usually discuss the medication plan based on the specific type of cancer you have. Make sure you understand as much as possible about the diagnosis first, so you can research best practices for treatment. It’s also important that I say: be careful when doing research online! Some websites can be misleading, so stick to sites from reputable sources. BCAN has webpages dedicated to providing accurate information. Go to Bladder Cancer 101 to learn more.

Your doctors will recommend treatments based on your age, the stage and grade of cancer, and the likelihood that the medication will work. When discussing options with your doctors, it’s important to cover all available options, including how a specific medicine work, how it is administered, and possible side effects.

Most importantly, don’t feel rushed into making decisions about your care. Discuss your options with your significant other, family members, or close friends, but remember that the decision is ultimately up to you and your medical team. Once you decide on a treatment and start the regimen, you may experience side effects. If you’re having a difficult time, talk to your doctors or nurses right away.

Beyond treatment, what else is important for patients or caregivers to consider in dealing with bladder cancer?

Stephanie: Don’t underestimate how important it is to take care of your emotional needs! BCAN has a variety of patient support programs that can connect you with other people who have gone through similar diagnoses and treatments. One of the most useful tips we hear from the bladder cancer community is how helpful it is to talk to others dealing with the same issues.

There are also other great programs to learn more and connect with other people with similar experiences. For example, our national Walk to End Bladder Cancer program is a signature event that we host every year. Thanks to our national sponsors like AstraZeneca, we’re able to give voice to patients, survivors, caregivers, friends and family through this initiative. Events are also a great way to meet other members of a community who know exactly what you’re going through and can help you better navigate the treatment journey. Click here to find an event near you.

Another great patient support resource is My Bladder Cancer Stories. We’re well aware that there are real people behind the disease statistics and everyone’s cancer journey is unique. Reading different stories will help you understand possible treatment options, plan for potential next steps and understand how you can live life to the fullest. Find the stories here.

 

 

Many thanks to BCAN for their partnership this month and year-round; together we are working to increase awareness and share resources to build a stronger bladder cancer patient community. Alongside BCAN, we will continue to work tirelessly towards our shared vision to eliminate bladder cancer as a cause of death.