Newly Diagnosed

You’ve just learned that you or a loved one has bladder cancer. After being newly diagnosed, it’s natural for you to be upset, depressed, panicked and overwhelmed. Know you are not alone and that there are people out there to help you.

There are several resources available to you as you begin your cancer journey:

To help you become the best advocate for your own health, we have put together this list, compiled by individuals who are living with bladder cancer. We hope you find it useful.

When you are newly diagnosed:

  1. Don’t panic. When we first hear the C word we all think the worst is going to happen. Many times a diagnosis of cancer does not bring the worst case scenario.
  2. Have a good cry, kick something, yell and then get on with fighting your illness. If you get depressed, see a therapist or talk to your health care provider. There’s a lot they can do to help you.
  3. Be patient with the ones who love you. Remember, this is hard on them also. Cancer affects the whole family.
  4. Accept help from your family and friends who offer. Ask them for support, help and understanding.

To begin the fight:

  1. Bladder cancer is a treatable disease. Learn as much about your diagnosis as you can. Look on the internet, search medical libraries, request BCAN’s patient handbook. Read the literature yourself. If you find that researching it upsets you, let someone close to you do it and bring you the relevant information.
  2. Many urologists don’t know enough about bladder cancer. If you want the best treatment, find a highly-regarded urologist who specializes in bladder cancer. If you can, seek help in a major cancer center where they treat many cases of this disease. Choose a urologist you trust and with whom you feel comfortable. Find a doctor who will talk to you.
  3. Get 2nd, 3rd and 4th opinions if you are so inclined. Doctors can and do vary significantly on the treatments they recommend.
  4. Remember, bladder cancer is not just bladder cancer; it is a disease that can effect the entire urinary system including your kidneys. That’s why it is important to move forward with a correct diagnosis and course of treatment as soon as possible to prevent the spread to other parts of your urinary tract.
  5. Understand your options. Talk them over with your significant other, family members, or close friends and make decisions that are agreeable to both of you.

When you visit a doctor

  1. Write down your questions BEFORE your appointment and allow space to write down the answers. Or, take a tape recorder with you.
  2. Ask a lot of questions.
  3. Have a family member or friend accompany you just to hear what is being said. Four ears are generally better than two.
  4. Get copies of every report and test result, keep them and learn exactly what they mean.
  5. 5. Suggested questions to ask your doctor:
  • What kind of bladder cancer do I have?
  • What is the stage of the disease? Has the cancer spread?
  • What is the grade of the tumor?
  • What are my treatment choices? Which do you recommend for me? Why?
  • What are the expected benefits of each kind of treatment?
  • What are the risks and possible side effects of each treatment?
  • What is the treatment likely to cost? Is this treatment covered by my insurance plan?
  • How will treatment affect my normal activities?

As you travel down this road:

  1. Investigate clinical trials if appropriate for your cancer.
  2. Do what you can to improve your health and strengthen your immune system.
  3. Be diligent. Don’t put off a doctor’s appointment or test, even if your check-ups are clear. If you are scheduled every three months — be there. Same holds true for every six months or every year.
  4. Reach out to other cancer survivors. Your experience will help others.
  5. How to get a second opinion:
  • Before starting your treatment plan, or having surgery, you may want to get a second opinion about the diagnosis, stage, and treatment. Some insurance companies require a second opinion; others may cover it if the patient requests this.
  •  Gathering medical records and arranging to see another doctor may take a little time. In most cases, a brief delay in treatment will not affect the outcome. To find a doctor for a second opinion, you can ask your own doctor for a referral. You should also consider contacting the Urology Department at a Comprehensive Cancer Center.
  • In general, physicians at the cancer centers see a higher volume of bladder cancer patients and have considerable experience dealing with the disease.

And finally, some words from those who are in this fight:

“Encourage your medical team to work with you as an individual, not as an illness. (There is not a “one size fits all’ treatment for any disease.) Believe in yourself. Be your own best friend. Be kind to yourself as you would a friend in need. Know the disease is not who you are.”

Karen, diagnosed in 2003

Information and services provided by the Bladder Cancer Advocacy Network (BCAN) are for informational purposes only. The information and services are not intended to be substitutes for professional medical advice, diagnosis or treatment. If you are ill, or suspect that you are ill, seek professional medical attention immediately! BCAN does not recommend or endorse any specific physicians, treatments, procedures or products even though they may be mentioned on this site.