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 colorectal 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.
The treatment of colorectal cancer requires multiple disciplines and is based on clinical staging which includes rigid proctoscopy, pelvic MRI and CT. All of our cases are discussed at a multidisciplinary tumor board, and a specific treatment plan for each individual patient is determined by a team of colon and rectal surgeons, radiation oncologists, medical oncologists and radiologists.
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. You need to understand what is happening in order to 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 colorectal cancer and talk to them about what was important to them about their 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. Many people get a second opinion. 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.
- Ask the doctor to put chances of recurrence with various treatment options in a way that makes sense to you, like percentages. If surgery plus radiation have an 85% cure rate, and chemotherapy would only add an additional 2-3%, is it worth the trauma and side effects of chemotherapy? The only person who can answer that is you. Research has shown that people do better with any medical treatment if they feel it is the right choice for them.
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. It focuses on relief from symptoms of the illness and the treatment and incorporates the patient and family to improve quality of life for both the patient and family members. Palliative care is provided by a specially trained team of doctors, nurse practitioners, a social worker and a chaplain 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 preparing for the end of life. 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, incorporating 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 cancer can help you make treatment and screening decisions under certain conditions. The Hereditary Cancer Clinic at Siteman helps identify and support patients with familial predispositions to cancers like colorectal cancer. Red flags for possible hereditary cancers include:
- Family history of colorectal cancer, especially in a parent, sibling or child; early-age onset of a particular cancer, multiple family members with the same cancer, or multiple types of cancer within the same person.
- Familial adenomatous polyposis (FAP): This hereditary colon cancer syndrome is caused by an abnormal alteration in the APC gene. Individuals develop hundreds to thousands of polyps. Since any of the polyps may develop into cancer, removal of the colon is recommended. Polyps may develop in other areas of the digestive system, requiring lifelong cancer screening.
- Hereditary non-polyposis colon cancer (HNPCC): This hereditary colon cancer syndrome involves an abnormal change in one of at least four genes. Family members with HNPCC have an 80 percent lifetime risk of developing colon cancer. Female family members have a 40-60 percent lifetime risk of developing uterine cancer. Other cancers, such as gastric or kidney tumors, may be associated with this syndrome. Colon cancer screening and uterine cancer screening are recommended, beginning at a young age. Other screening may be recommended based on family history.
Approximately 5 to 6 percent of all colon cancers in the U.S. are caused by inherited colon cancer syndromes. Siteman maintains a registry of patients with known inherited tendencies for colon cancer. Most patients in the registry have familial adenomatous polyposis (FAP). Others have hereditary non-polyposis colon cancer (HNPCC), which results in cancers of the colon (primarily), uterus, ovaries, urinary tract and stomach. Other inherited conditions include MYH-associated polyposis (MAP) and Peutz-Jeghers syndrome (PJS). Identifying greater risk helps in decision-making, which could include preventive colectomy (removal of the colon), more aggressive treatment, and more vigilant screening.
Participation in Clinical Trials: At any given time, Siteman Cancer Center has more than 500 clinical trials in progress. Colorectal 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 for colon and rectal cancer currently in progress.