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After the initial shock of being given a new diagnosis of cancer, a flood of emotions follow with fear and anxiety being foremost. Questions fill your mind:
How serious is it?
Can 1 be cured?
Am I going to die?
Will I suffer?
What treatments are available?
Can 1 do anything to improve my odds?
What side effects will occur from the treatments?
Will I lose time from work?
Will my insurance cover the cost?
Will I be disfigured?
Will my spouse and family be supportive?
Do 1 have a good doctor?
Bladder cancer, or any serious potentially life threatening illness is generally alien to most individuals. Suddenly, lives are changed and a new reality must be dealt with. Becoming a “patient” or worse “a cancer patient” is not only threatening, but a dreaded proposition. Cancer patients are not happy with the loss of autonomy, the invasion of privacy, the discomfort inflicted upon them and the demands on their time and quality of life. As a patient, being thrust into this altered identity, it is essential to seek out the information you need. Having a fundamental base of knowledge is a must when facing the issues and treatment decisions which lie ahead. In the following pages, together we will explore bladder cancer, a disease which is totally foreign to most of us until the diagnosis is made. I have chosen to present the information in a question and answer format, written in a conversational tone, as if I were having an extended consultation with one of my patients. The questions are typical of what individuals have asked over the years. 1 have covered the key issues and decisions the individual with bladder cancer may face. The answers are to the point and cover the essentials required to make an informed decision for most individuals. For others, a more detailed resource may be required. For helpful sources of additional information see the Appendix.
Each individual’s situation is unique. Decisions on treatment may be modified based on the patient’s preferences and values and altered by other considerations such as age and coexisting conditions. By becoming an individual knowledgeable of bladder cancer, you will be prepared to fully partner with your physician for your best possible outcome. To your companions and family members, this book will serve to answer the many questions and doubts that may arise. Having your loved ones informed and supportive is a big plus for the individual facing this new challenge.
The book is written in a logical sequence starting with finding a qualified urologist to the basics on bladder cancer, its assessment and treatment. At the end of the book, you will find chapters on complementary medicine, advance care planning, and hospice care. The book can be read in sequence or each chapter can serve as a resource covering the basics of the topic. It is my hope this book will help clarify the many issues and options individuals must face with bladder cancer. For family members, significant others and concerned friends, this resource should help improve your understanding and thus your ability to assist your loved one.
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Understanding bladder cancer is a tremendous first step that will assist you in your treatment. Having a qualified urologist administer the actual treatments and care for you is essential for the best possible outcome. In the following chapter, we will explore what you need to know to assure you have the right urologist.
BESIDES LEARNING ABOUT MY DISEASE, WHAT IS MY MOST IMPORTANT FIRST STEP?
Make sure you have an excellent urologist supervising your care. A urologist is a surgical specialist trained to care for conditions involving the male and female urinary tracts and the male reproductive system. The bladder is part of the urinary system, and a urologist is trained to care for problems involving it, including cancer.
IS IT IMPORTANT TO HAVE A BOARD CERTIFIED UROLOGIST?
A urologist board certified by The American Board of Urology has gone through an accredited urology training program (generally a four year program), following two years of internship and residency in surgery after four years of medical school. The urologist must be in practice after training and provide a detailed list of surgeries, including complications, over a twelve month period. The doctor will then take a two day oral and written test covering a wide spectrum of urology. If he passes, he is certified for a period of ten years. At the end of the ten year period, he must recertify to maintain his board status. Recertification entails a three month surgical and procedure log and a written test as well as reference letters from those in a position to judge the practicing urologist’s work. Any malpractice or judgments are also reviewed. Although being board certified does not guarantee you have an excellent urologist, it demonstrates that he has the fund of knowledge to practice urology competently. Even though board certification is voluntary, in today’s competitive environment more and more hospitals and insurance plans are requiring their specialists to be certified.
HOW CAN I TELL IF MY UROLOGIST IS BOARD CERTIFIED?
The urologist has worked hard to obtain board certification. The certificate from The American Board of Urology is often displayed openly in his office. If you do not see it, you can simply ask him or you can call 1-866-275-2267 or use this web site: www.certified doctor.org
SHOULD I TRY TO FIND A UROLOGIST WHO HAS BEEN IN PRACTICE FOR YEARS OR A NEWLY TRAINED ONE?
Surgery is a skill which can only be mastered with experience. The saying “practice makes perfect” definitely pertains to surgery. Although a urology training program offers the new physician years of training, his surgical skills will continue to improve with further experience. However, each individual physician has his own innate skills. Some more quickly learn and are simply better at the technical craft of surgery than others. For the most part, urologists finishing an accredited urology program have the training and skill set required to care for patients with bladder cancer.
Experience also counts. As a physician practices the art of medicine, his depth of knowledge and ability to treat grows. Ask your physician how long he has been treating patients with bladder cancer. If you require major surgery ask how many he has performed and if his complication rate matches what is expected.
Physicians by and large do improve as they practice, and all physicians are required to show that they are continuing to learn by partaking in continuing medical education, a requirement to remain licensed. Most physicians are compulsive in their medical practice and care deeply in the care they deliver. They continually strive to improve.
Some physicians may become “burned out” over the years as they continue to face the pressures of a busy medical practice. Similarly, towards the end of a surgeon’s career, technical skills may slip due to aging. New urologists are trained in the latest techniques and are familiar with recent medical literature, but may lack practical experience. In the end, recommendations from others and reputation may be your best guide to finding a qualified physician.
WHAT QUALITIES SHOULD MY UROLOGIST HAVE?
Ideally, you should have a competent, technically skilled surgeon who is also approachable and compassionate. You should be able to freely ask questions pertaining to your disease and treatment. Your physician should answer your questions forthrightly. Although some patients prefer a surgeon who will take over all aspects of care with no questions asked, most prefer in depth explanations, especially when alternatives exist and risks are involved.
Your urologist must be an individual who takes your concerns, priorities and values seriously. Your urologist should be a good communicator. It is his responsibility to keep you fully informed of your progress, make you aware immediately if things are not going well, and educate you fully in treatment alternatives. Your specific values should be incorporated into the decision process if alternatives are available. Even if your urologist makes a recommendation and you choose an alternative course (unless you are putting yourself in extreme jeopardy), he should honor your choice and continue his care of you. Becoming an educated patient will make your decision making process easier. Granted, your physician should provide you with the basics, however having time to review and digest the material will allow you to fully understand and accept your treatment regimen, providing you with peace of mind.
Beware of the physician who bombards you with statistics and studies and leaves the decision making to you. After all, you are not a physician and don’t have the practical hands on experience he does. Your physician should provide the facts and the statistics, guide you through the information, and make treatment recommendations based on your preferences.
You may find yourself emotionally distraught and overwhelmed. Having a physician on your side is invaluable. You should be able to trust your physician. Complete honesty on the part of your doctor in his care of you is a must. From the doctor’s point of view, trust is also a necessity. Physicians have an extremely difficult time dealing with individuals who do not trust them. Without trust, the physician patient relationship is extremely hindered.
Lastly, your urologist should be compassionate. Having cancer is tough enough, you shouldn’t have to deal with a rude or arrogant physician. Your urologist should be supportive at all times. He should treat you as an individual and not just as “another cancer patient.” People with bladder cancer will require long term follow up and care. Having a compassionate individual to work with will make a tremendous difference
HOW DO I FIND A GOOD BOARD CERTIFIED UROLOGIST?
A good starting point is your primary care physician. He will generally have a number of specialists to whom he generally refers his urology patients. If the primary care physician has been working with these urologists, he should have an appreciation of their skills and temperament. However, this does not mean he is referring you necessarily to the best available urologist in your area. His choices may be limited by insurance or hospital networks. An excellent source of information would be nurses who work in the operating room, recovery room or on the surgical floor where the urologist does his surgery. Asking friends or other individuals who have had experience with the urologist can also prove useful. After a little digging, you can often quickly learn what type of reputation the urologist has in the community. Generally, if an established urologist has a “good reputation” this is an indication that he has pleased many individuals with his care.
SHOULD I CHECK TO SEE HOW MANY TIMES MY UROLOGIST HAS BEEN SUED?
Given the litigious society we live in, most physicians can face at least one malpractice lawsuit during their careers. In urology, two of the most common causes of litigation would be a surgical mishap leading to a complication, or failure to diagnose cancer in a timely fashion.
Medicine is based on science, but also is an “art.” Individuals do not walk into their physicians offices with a diagnosis and treatment plan always readily apparent. Even the best intentioned, thorough physician will make mistakes. Most of these errors do not result in harm. On occasion they do, and a law suit may follow. If a physician develops a good working relationship with a patient, these bad outcomes more often than not are acknowledged and accepted without legal entanglement. Competent, busy physicians may be dealing with a higher mix of complicated patients, leading to a higher number of potential suits. Physicians who have poor “bed side manner” may find themselves dealing with more suits. If a physician has an inordinate number of suits, “red flags” should go up, as competency may be an issue.
For those individuals who wish to check out the malpractice history of their physician, you may request an inquiry from the National Practitioners Data Bank at: 1-800-767-6732 or check the web site: www.npdb-hipdb.com
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