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. 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.
- 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 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 tumor and treatment information on the Siteman website, make sure you have the right name and grade of the tumor. 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 your 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
Genetic counseling and testing for a strong family history of tumors and cancer can help you make treatment and early detection decisions under certain conditions. Some of the hereditary conditions associated with the formation of brain and spinal tumors include:
- Neurofibromatosis 1 and 2
- Tuberous sclerosis
- Von Hippel-Lindau disease
- Li-Fraumeni syndrome
Participation in clinical trials: At any given time, Siteman Cancer Center has more than 300 clinical trials in progress. Brain and spinal tumor 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.