Making Treatment Decisions
The diagnosis of cancer can be a highly charged emotional event. It may take a number of days before we can begin to think clearly about this information. The inclination may be to follow whatever the person delivering the news tells you. Not always the best idea. You have time to think through your diagnosis and what type of treatment fits you. People who have been through the diagnosis of head and neck cancers 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 to help you take a deep breath and 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 might also 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 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 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 life during treatment, not put your whole family on hold. 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
Participation in Clinical Trials: At any given time, Siteman Cancer Center has over 300 clinical trials in progress. Head and Neck 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.
Reconstruction: When tumors are removed in the head and neck area, the results can be disfiguring and affect normal function. Siteman surgeons have pioneered a technique to rebuild the tongue after a large portion of it has been lost to cancer surgery, creating a structure that functions somewhat like a tongue and helps patients eat, chew, swallow and speak more normally following surgery. For patients who will lose part of their larynx, or voice box, surgeons specialize in voice-box reconstruction, creating replacement vocal cords.
When any portion of the face, like lips, cheeks, forehead or nose needs to be removed, skilled surgeons, prosthodontists and dentists can create replacement tissues that will work well with surrounding structures, provide maximum function and look natural. Talk to your oncologist about how that might apply in your case.