Communicating with a Cancer Team

As a practical matter, effective communication tops the chart. Here are some things to remember and share, if appropriate, with the cancer patient and family you're ministering to in their journey with cancer.

Putting a Team in Place

No one can fight cancer alone. Each person needs help from a team of cancer specialists. In addition to oncologists, a cancer care team will likely include other clinicians, such as nutritionists, pain management specialists, psychologists, and/or rehabilitation therapists, to address other needs throughout treatment. In addition to finding an experienced, multidisciplinary care team, it's important to find one that treats the cancer patient as an individual and makes him or her a partner in care.

Taking an Active Role

The cancer patient is ultimately in charge of his or her health. It's important for the doctor to take time to listen to and answer questions. Unfortunately, today’s health care system often leaves doctors feeling hurried and patients confused.

More and more, people fighting cancer are beginning to take an active role in their care. Taking an active role means working cooperatively with the health care team and asserting the patient's needs. Even if the cancer patient prefers to have the doctor take the lead, he or she should be fully involved in decision-making about treatment.

Being an active participant in cancer care can give a cancer patient and family members a greater sense of control over the situation. One way to become an active participant in care is to build a good relationship with the cancer team. Cancer patients and their family members can gain confidence and become empowered to fight when they feel like they have a team fighting with them.

Forming a Partnership

A good doctor-patient relationship is an essential component of cancer care. A good relationship is built first on trust. A cancer patient needs to be able to trust the doctor and other members of the health care team. A lack of trust can create a barrier to receiving the care he or she needs and deserves. A good relationship is also sustained by mutual respect. The cancer team deserves respect, and so does the patient. The doctor should offer the patient a central role in the decision-making process, and work with the patient to select a cancer treatment plan right for the individual. Moreover, a good partnership with the health care team is based on open and effective communication.

The Importance of Good Communication

Even if the cancer patient has a good relationship with his or her health care team, talking about the individual cancer experience can be a challenge. However, good communication with the doctor is important for many reasons. It can help with:

• Gathering clear information about the disease
• Gaining an understanding of treatment options
• Paving the way for making informed decisions about care
• Structuring a more personalized treatment plan
• Better preparing for and managing side effects
• Expressing feelings and concerns
• Receiving comprehensive follow-up care
• Feeling more in control of the situation
• Feeling confident about your care

Questions for the Health Care Team

An important part of cancer care is for the cancer patient to feel free to ask questions of the health care team. Each person's needs are unique and the questions will change throughout the care. The following are some examples of questions a cancer patient may decide to ask members of the cancer team:

• What type of cancer do I have and what does it mean?
• Am I at increased risk for developing cancer again? Are other members of my family at risk for developing cancer?
• What is the stage of the cancer and what does it mean? Has the cancer spread to other parts of my body?
• What are my treatment options? Am I eligible for any clinical trials?
• How often and how long will I have to undergo treatment?
• What side effects might I expect? How can I reduce or manage these side effects?
• How will I know if my treatment is working?
• Will I have to stop working during cancer treatment? Is there a special diet or exercise routine I should follow?
• What support services are available for patients and families? Can you recommend a counselor?
• When and who should I call if I have questions?

Gearing Up for the Fight

Cancer can be overwhelming. Cancer patients may find it difficult to concentrate or to comprehend the information they receive from the doctor and/or other sources. They may feel hesitant to ask questions or to express their concerns with their health care team. If they're dealing with symptoms, such as nausea or fatigue, they may not want to mention it during their appointment because of time constraints. However, it is very important to find a way to communicate these details with the doctor. Effective communication will help the cancer patient feel confident in his or her treatment and get the needed support.

• Educate yourself. Learning about cancer is like learning another language. When you understand the language, communication improves between you and your health care team. Ask your doctor if there is written information or educational materials (i.e., books, pamphlets, videos, etc.) that you can take home with you. By having knowledge of your treatment options, you will be better able to balance these options your own needs and make informed decisions. And, the more you know, the more confident you will feel about your decisions.
• Keep files and records. Staying organized is an important component of cancer care. If your health care team members reside in different locations, coordination of care can be a challenge. Keep a record of your medical history, medications, test results, and symptoms. Also, keep a calendar with your doctor’s appointments and treatment schedule. Take these records with you to your visits. The more organized you are, the better able you will be to help manage your care..
• Come prepared to appointments. Have you ever left your doctor’s office and forgot to ask something? Even the most caring and patient doctors have hectic schedules and often have limited time to spend during each visit. Try to write down the specific questions you want answered ahead of time. Ask your doctor if you can send the list before your visit. Make your questions specific and brief, and prioritize them in order of importance. By preparing in advance, you can make the most effective use of you and your doctor’s time during appointments.
• Find out what works for you. Each person’s communication style is different and what works for one may not work for another. Some people feel more in control and empowered when they know all of the details. Others find all the information to be overwhelming. Still others would prefer information they can take home and read about on their own time. Decide how much or how little information you want to know, and let your doctor know.
• Speak up. You know yourself better than anyone else. It’s important to keep your health care team fully informed about how you are coping, and any new or unusual symptoms you may be experiencing (e.g., changes in your sleep, bowel habits, mood, appetite, memory, sexual function). If members of your health care team are located in several different places and departments, make sure you keep all your providers informed. Communicating your needs will give your cancer team a clearer picture of your situation so they can address your needs and formulate a more individualized treatment plan.
• Bring someone with you to appointments. Naturally, you may be preoccupied with worries or find it difficult to concentrate during appointments. Whenever possible, it may help to bring a family member or friend with you. They can think of questions you may not have thought to ask, and point out changes you may not have noticed. They can also help take notes for you and assist with decision-making.
• Take notes. It’s easy to forget what your doctor said after you leave your appointment. Bring a notebook to all your visits and take notes, or get a friend or family member to take notes for you. You can also ask your doctor if you can tape record your discussion (always ask permission first) for later review.
• Clarify what you don't understand. If your doctor uses medical terms you don’t understand, don’t be afraid to ask him or her to explain it in another way. Try repeating what you think was said back to your doctor for confirmation. If you understand better with pictures, ask to see x-rays or slides. If you still have difficulty understanding, ask your doctor for printed material, or other educational materials. Unless you tell your doctor that you don’t understand something, he or she will usually assume that you do.
• Stay in touch. Make sure you understand the next steps before leaving your doctor's office. If your doctor was not able to answer all of your questions due to time constraints, ask when a good time would be to finish your conversation. Find out the best method (e.g., phone, email) for you to reach your health care team if you have questions once you get home.
• Consider a second opinion. Even if you have a good relationship with your doctor, you may want to seek a second or third opinion before beginning therapy. Don't be afraid of offending your doctor if you would like to get a second opinion. Most doctors understand the value of a second opinion when facing a major decision. It doesn’t necessarily mean you have to change doctors. And, when you are able to talk with several experts about the disease, it can help you feel more confident knowing you have explored every possible resource to receive the best available care.
• Seek help when you need it. Remember, you are your most important advocate. Your health care team is there to help you. Let them. If you are dealing with troubling side effects, it is better to seek advice rather than wait to see if the symptoms become worse. Don't wait for your next scheduled appointment to contact your health care team about an important issue. Ask for referrals to psychological, financial, and/or spiritual support resources. In addition, family members, friends, and other cancer survivors can provide a tremendous amount of support as well.
• Don't give up. If you have been given no further options, it does not necessarily mean that other options do not exist. Remember, there are other doctors that may present a different picture. If you want to continue treatment, explore your options. Some hospitals may be able to provide more advanced technology and resources that can help you. If you want to continue to actively fight cancer, find a health care team that is willing to fight with you.