Making Treatment Decisions
Receiving the news that you’ve been diagnosed with cancer is a difficult and stressful event that leads to numerous questions and concerns. It may take a number of days before you can begin to think clearly about this information. The inclination may be to follow whatever the person delivering the news tells you. This may or may not be the best option for you. You have time to think through your diagnosis and what type of treatment fits you. People who have been through the diagnosis of bladder cancer tell us the best way to get through it is to seek out support and don’t rush into a treatment you may not be comfortable with. There are many resources at Siteman that can help you explore your options.
Getting the Information to Make a Decision
- Write down your questions and biggest fears and bring them with you when you visit your doctor.
- If there is something you do not understand, don’t be afraid to ask questions. Keep asking until you understand the answer. Otherwise, you can’t make the best possible choice for yourself.
- Bring a friend or family member when you visit your doctor. Because you will have a lot on your mind, a friend can help you remember what was said. Your friend also can take notes and remind you of questions to ask. You may also want to tape record the session with your doctor’s permission.
- Find other people who have had the same condition and talk to them about what was important to them about their treatment. Also realize that because we are all different, their outcome may not be your outcome for the same treatment.
- Don’t accept the first treatment recommendation you receive and don’t be afraid to get a second opinion. You may be at Siteman for a second opinion because the physicians here lead in their fields. Without a second opinion you won’t know all the options you may have. One doctor may recommend less or more treatment than you think you need. Get as many opinions as you need to feel comfortable about your decision. You don’t have to decide today.
- Learn what you can about your cancer, but don’t over-study it. Just research the parts you need to know now to make a decision. It will help you ask the right questions. When researching your cancer and treatment information on the Siteman website, make sure you have the right name and subtype of your cancer. Otherwise, you may be unnecessarily alarmed. Also, keep in mind that tumors that used to be deadly may now be much more manageable or curable.
Finding Support for Putting Treatment Into the Context of Your Life and Family
Palliative Care: Palliative care provides a specialized approach to medical care for people with serious illnesses, focusing on relief from symptoms of the illness and the treatment, and incorporating the patient and family members to improve the patient’s quality of life. Palliative care is provided by a specially-trained team of doctors, nurse practitioners, social workers and chaplains who work together with a patient’s surgical, radiation or medical oncologist to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness and is provided along with curative treatment.
One of the biggest misconceptions is that palliative care is about foregoing treatment for the disease and dying. Its real goal is to help you manage your symptoms and treatment effects so you can tolerate the treatment better and have a better quality of life during treatment. The palliative physician, as a consultant to the doctors managing medical care, makes recommendations on extended pain management and any other support the patient or family needs. Palliative care takes the proposed treatment plan and looks at how it integrates into the family’s life, taking into account family status, socioeconomic issues, and spiritual needs in the plan of care. You can request a palliative care referral from your doctor.
Decisions to Make About Your Treatment
At any given time, Siteman Cancer Center has over 350 clinical trials in progress. Bladder cancer patients who come to Siteman have access to novel or more advanced treatments than you could get in a community hospital. If your doctor feels a clinical trial is appropriate, he or she may suggest it. You can review the clinical trials currently in progress or ask your treatment team about appropriate trials available to you.