You’ve just learned that you or a loved one has bladder cancer. At first, 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 first 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.
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.
And finally, some words from those who are in this fight:
“Your chances of survival increase to the extent you become your own advocate by taking a partnership role in treating your disease. Insist on knowing not only what is being done to you, but why. Weigh the benefits versus the risks before deciding.”
“It may sound strange, but my life has never been better than it has since I was diagnosed. Living with cancer makes me realize what is important in my life, and it is not my job, it is my God, my husband, my children and my extended family.”
Many people have made this journey, and there are sources of support available to you for Comfort, Hope and Healing. Allow this to be your time to heal, to live fully and to love. You are stronger than your disease. In time you will learn that you can endure, that you really are strong. Maintain habitual positive thoughts, good physical health, healthly eating habits and a commitment to personal relationships with family and friends that make you laugh.You cannot change your diagnosis, but you can change your perception of your situation.
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.
The information and services provides 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
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