Coping With Bladder Cancer

Wherever you are on the patient pathway—having just been diagnosed with bladder cancer, embarking on treatment for it, or undergoing monitoring for recurrence—you are likely experiencing some anxiety and sense of unease. To give you some peace of mind, here are tips to guide you through your bladder cancer journey.

What Is Bladder Cancer?

Verywell / Emily Roberts

Educate Yourself

Knowledge is power and there is no exception when it comes to understanding your bladder cancer diagnosis. That said, bladder cancer is a particularly complex disease, so reading about it may seem overwhelming. This is normal—there is a lot of information to digest.

If you do find yourself getting bogged down with the nuances, take a step back and write down your questions or sources of confusion.

Be sure to bring these questions or concerns to your next practitioner's visit or ask your healthcare provider if there is a way to contact them through email or a health portal.

In the end, you should gain knowledge to your satisfaction. Your foremost goal is to be an informed patient so you can make good choices, not to become an expert.

Bladder Cancer Doctor Discussion Guide

Get our printable guide for your next doctor's appointment to help you ask the right questions.

Doctor Discussion Guide Old Man

Prepare for Appointments

Planning for your many healthcare provider visits and tests is critical. Following these steps can help your appointments go smoothly:

  • Record all your appointments, tests, and surgery dates in a calendar.
  • Arrive on time (if not a bit early) to your appointments and bring a partner or trusted loved one.
  • Bring a list of all your medications (including vitamins or over-the-counter supplements), allergies, medical problems, and family history to each medical visit.
  • Carry a notebook of questions and concerns around with you and periodically write in it when another thought pops into your mind. Remember, anything goes here—every question or worry is worthy.
  • Investigate financial issues related to your health care so you can properly budget.

Also, try your best not to feel overwhelmed by the sheer number of healthcare providers you will see. Here is a quick breakdown so you can best understand each practitioner's unique role in your care:

  • Urologist: A surgeon who performs your bladder cancer removal and monitors you with cystoscopy.
  • Medical oncologist: A healthcare provider who treats cancer with medicine, like chemotherapy.
  • Radiation oncologist: A practitioner who provides radiation therapy.
  • Pathologist: A healthcare provider who looks at your cancer cells under the microscope. These findings help dictate your treatment plan. (You will likely not meet your pathologist.)

Other members of your team will likely include a nurse practitioner, physician assistant, psychologist, financial coordinator, and/or social worker.

Share Your Story

How and when you tell others about your diagnosis and/or experiences is wholly up to you. For instance, some people may choose to detail their healthcare provider appointments and cancer treatments in a blog for people to read. Others may write in a personal journal or talk regularly with a close friend. Still some may dodge well-meaning questions from friends, family, and/or colleagues, preferring to keep their diagnosis private.

All of this is OK—being diagnosed with bladder cancer is a big deal. Telling others can be a tricky and delicate matter, especially when it comes to disclosing your diagnosis to family members.

Your children or other loved ones may want to protect you and take a front seat to your care, which is often well-intentioned, but can also be taxing and stressful for you.

While it's good to file away their opinions, trust your instincts and your own diligent research.

Move forward with the healthcare team you are most comfortable with. Of course, seeking a second opinion is often a good idea and cannot hurt.

Find Support

The physical and emotional toll of being treated for bladder cancersurgery, chemotherapy, and follow-up appointments—can be draining, intensive, and very time-consuming. Everyone needs some help and support.

Be open to considering a support group, either an online community, like or Cancer Survivors Network, or a group within your own community. 

Other means of support include seeing a professional counselor who has experience treating people with cancer. In fact, sometimes talking to a stranger is easier than opening up to a friend or family member.

Discuss Quality of Life Issues

For muscle-invasive bladder cancer, the standard of care is a radical cystectomy with urinary reconstruction. While treating the cancer is a healthcare provider's main focus, it's important to address quality of life issues that will arise after the surgery, the two most common ones being:

  • Sexual problems
  • Urinary problems

Erectile dysfunction can be a side effect with radical cystectomy in men, as the nerves that are involved in a man's erection are located at the base of the prostate, which is removed in a radical cystectomy.

In women, achieving an orgasm may be affected if the nerve bundles that line the vagina are damaged. Sexual arousal in women may be affected too if the clitoris loses some of its blood supply during surgery.

Discussing worries with your surgeon is important, as certain techniques may be able to help avoid or lessen certain problems from occurring.

Depending on the type of urinary diversion your surgeon and you decide on after radical cystectomy, there can be a number of quality of life issues that arise, including:

  • Stress of caring for the skin around your stoma
  • Emptying your urostomy pouch, a small collection bag located outside the body, or putting a catheter into your stoma
  • Sexual functioning with a urostomy pouch
  • Medical problems that arise from urinary reconstruction, urine leaks or blockages

The good news is that all of these issues can be addressed, but may take some patience and resilience on your part. One solution is an enterostomal therapy nurse, who can teach you how to properly care for your stoma and the surrounding skin.

Frequently Asked Questions

  • What is bladder cancer?

    Bladder cancer is when the cells that make up the urinary bladder grow out of control. The continued growth of these cells can eventually form a tumor; if left untreated, the tumor can spread to other places in the body.

  • What is a cystectomy?

    Cystectomy is a surgical procedure that involves a surgeon removing specific parts or the entirety of the urinary bladder. It has been used to treat invasive bladder cancer, or urinary bladder cancer that is at risk of spreading to other parts of the body.

  • Does bladder cancer cause pain?

    Pain or a burning sensation during urination is a symptom of bladder cancer. However, pain isn't usually present in the early stages of bladder cancer. More often than not, blood in urine is a sign of infection, but it can be an early sign of cancer. If you are concerned with any possible symptoms, talk with your healthcare provider.

6 Sources
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read our editorial process to learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
  1. Urology Care Foundation. What is Muscle Invasive Bladder Cancer (MIBC)?

  2. Modh RA, Mulhall JP, Gilbert SM. Sexual dysfunction after cystectomy and urinary diversion. Nat Rev Urol. 2014;11(8):445-453. doi:10.1038/nrurol.2014.151

  3. American Cancer Society. Surgery Can Affect a Woman's Sex Life.

  4. American Cancer Society. What is bladder cancer?

  5. Cleveland Clinic. Cystectomy.

  6. American Cancer Society. Bladder cancer signs and symptoms.

Additional Reading
  • American Cancer Society. Bladder Cancer Surgery.

  • McNeil, B. First Steps—I've Been Diagnosed with Bladder Cancer. In Gonzalgo ML (Ed), Patient's Guide to Bladder Cancer (1-8). Massachusetts: Jones and Bartlett Publishers.

  • Asgari MA, Safarinejad MR, Shakhssalim N, Soleimani M, Shahabi A, Amini E. Quality of life after radical cystectomy for bladder cancer in men with an ileal conduit or continent urinary diversion: A comparative study. Urol Ann. 2013 Jul-Sep;5(3):190-96.

By Colleen Doherty, MD
 Colleen Doherty, MD, is a board-certified internist living with multiple sclerosis.