Ask the Doctor – Winter 2009

Our questions for this issue of Outlook are answered by David Latini, Ph.D, Assistant Professor of Urology at Baylor College of Medicine. We sincerely appreciate Dr. Latini’s sharing his expertise on cancer survivorship issues.

Q. You conduct research on health-related quality of life among cancer survivors.  Based on your research, do you have any concrete tips for bladder cancer survivors to improve quality of life for themselves and their families?  Are there issues that bladder cancer survivors should be asking their doctor to address that can improve their quality of life?

A. I think the best advice I can give survivors is to ask for help when they need it. That goes for everything from help with managing physical symptoms like incontinence or sexual dysfunction or the feelings that come up when they find out they have cancer or later as they live with the possibility of recurrence. Sometimes just admitting that you need help is very hard, particularly when the help you need is related to subjects that are hard to talk about like urination or sexual problems. Research from a national prostate cancer database showed that urologists sometimes aren’t very good judges of quality of life in their patients. Your doctor and other health care providers may be able to help manage treatment-related side-effects and other concerns if you let them know what’s troubling you.

Many large hospitals have incontinence centers that can help you manage urinary side-effects of your treatment. Your urologist and your primary care provider can help you manage sexual dysfunction after BCG or other treatment. Educate yourself with books like Dr. Leslie Schover’s Sexuality and Fertility After Cancer (New York: Wiley; 1997). BCAN hosts an online support community on its website, www.bcan.org, specifically for bladder cancer survivors, caregivers and family members.  In addition, the American Cancer Society hosts the Cancer Survivors’ Network on their website (www.cancer.org). The Wellness Community (www.thewellnesscommunity.org) also has both in person and electronic resources for cancer survivors. These organizations have a wealth of information and opportunities for support where survivors can learn from the experiences of others who have struggled with the same problems.

Q. Because of bladder cancer’s high recurrence rate, lifelong monitoring and testing is required of most bladder cancer survivors.  Do you have any recommendations on how survivors can best cope with the constant anxiety of waiting for test results?

A. Anxiety from monitoring is a real problem, not just for bladder cancer survivors but for survivors of other cancers as well. And unfortunately, we sometimes don’t do a good job of supporting survivors struggling with anxiety about the possibility of recurrence or progression. If you feel like you want to talk to someone about your fears, the American Psychosocial Oncology Society offers a toll-free helpline to locate a counselor in your area. You can dial 1-866-276-7443 (1-866-APOS-4-HELP) or you may send an e-mail to info@apos-society.org with “Helpline” in the subject field. Or talk with a minister or other religious leader.

One of the best ways to manage anxiety is to take your mind off what’s bothering you. Volunteer with a group in your community to do something to help others. Spend time with your loved ones. Learn to meditate or do tai chi! Exercise or just take a walk with your spouse or partner.

Another good way of managing your fears is to learn the most you can about your cancer. What are the new treatments being developed? Attend BCAN conferences or webinars to keep up with new developments. Get involved with BCAN or local organizations fighting cancer.

Q. What future research projects are you considering that might help improve bladder cancer survivors’ quality of life as they navigate their treatment path and their long-term survivorship?

A. Very little research has been done on quality of life in bladder cancer survivors. Most of the research that has been done has focused on muscle-invasive disease, even though about 80% of new diagnoses are in nonmuscle-invasive disease. It’s also hard to advocate for more money and services for bladder cancer survivors until we do the basic research to document the quality of life concerns and distress that many people face. We’ve been enrolling survivors in a telephone survey and hope to use data from that study to encourage more research, particularly on survivorship.

We recently asked the National Cancer Institute to fund a project to modify an educational program we developed for prostate cancer survivors to make it appropriate for nonmuscle invasive bladder cancer survivors. We’re hoping to create a symptom management program that will be tailored to the specific problems that survivors face. The program will be provided over the telephone and through the mail, with materials written at the 6th grade reading level. We particularly want to target survivors in rural areas and smaller cities, where people may not have access to large cancer centers. We also hope to develop patient decision aids to help people look at the pros and cons of different treatments or other important medical decisions, like the type of urinary diversion they select.