Austin Van Grack, Cancer Prevention and Treatment Fund
Types of chemotherapy:
Patient concerns about chemotherapy:
Patient misunderstandings about chemotherapy
Why are patients confused about chemotherapy?
Health literacy and informed decision making about cancer treatments
Chemotherapy is one of the most common cancer treatments used today. However, 1 in 4 patients receiving chemotherapy do not understand why they’re getting it and how it’s supposed to help them.
Chemotherapy is a cancer treatment that uses one or more drugs to kill cancer cells. It stops or slows the growth of cancer cells, which otherwise may grow quickly.
Types of Chemotherapy
Sometimes the aim of chemotherapy is to get rid of or cure the cancer, but other times the goal is to help somebody with incurable cancer live longer or get relief from some of their cancer symptoms. While there are many different drugs used in chemotherapy (alone or in combinations), there are only five types or uses for chemotherapy. You may hear your doctor use one or more of these terms when talking about your chemotherapy:
- Curative chemotherapy
- Adjuvant chemotherapy
- Neo-adjuvant chemotherapy
- Palliative chemotherapy
- Maintenance chemotherapy
Curative chemotherapy aims to “cure the cancer,” meaning it is intended to eliminate all cancerous cells, resulting in what doctors call “complete remission.” The majority of patients receiving chemotherapy with the goal of cure are receiving chemotherapy as well as surgery or radiation.
Adjuvant chemotherapy is given in addition to other treatments, with the goal of curing cancer or lowering the risk of cancer coming back. Adjuvant therapy is given after surgery or radiation. If given after surgery, it may be called postoperative chemotherapy. Patients usually receive adjuvant chemotherapy when they have a type of cancer that is likely to reoccur, such as breast or colon cancer. Adjuvant therapy may or may not rid the body of all cancer cells but it should at least lower the risk of cancer coming back, or prolong the patient’s life.
Neo-adjuvant chemotherapy (sometimes called preoperative chemotherapy), is also given in addition to other treatments, but it is usually given before surgery in order to shrink the tumor and make it easier to remove or treat with radiation. Sometimes “inoperable tumors” can be surgically removed after neo-adjuvant chemotherapy.
For breast cancer patients, neo-adjuvant chemotherapy can sometimes reduce the tumor enough that a woman can choose to have breast-conserving surgery (lumpectomy) instead of having her whole breast removed (mastectomy). Most often neo-adjuvant chemotherapy will be used on breast cancer patients with tumors greater than 2 cm in size and where the cancer has not spread to other parts of the body.
It is important to remember that the goal of neo-adjuvant chemotherapy is not to cure the cancer but to give the patients more options for treatment, including treatments that are more effective and less radical.
Non-curative chemotherapy for prolonging life and reducing symptoms is called palliative chemotherapy. Palliative chemotherapy is often given to patients with advanced cancer in hopes of making patients more comfortable toward the end of life. It is sometimes given in combination with other cancer treatments.
The type of palliative chemotherapy a patient receives depends on the patient’s type of cancer and prognosis. Palliative chemotherapy is usually for patients with non-small-cell lung cancer, pancreatic cancer, or colon cancer.
Maintenance chemotherapy is given to help keep the cancer from coming back in patients whose cancer went away after the initial treatment. In other words, the goal of maintenance therapy is to prevent reoccurrence after the cancer has gone into remission. This kind of chemotherapy, which may include drugs, vaccines or anything shown to kill cancer cells—may be taken for a longer time than other forms of chemotherapy.
Maintenance therapy is most commonly used by patients who are diagnosed with late stage non-small cell lung cancer. Their cancer usually cannot be completely wiped out but it can be reduced and then kept in check for months or even years. Like palliative therapy, maintenance therapy is aimed at prolonging life and keeping the patient from getting worse, not curing the patient.
Maintenance therapy is also called consolidation therapy, post-remission therapy, intensification therapy, or early second-line therapy. Because chemotherapy has terrible side effects and since maintenance therapy is given over long periods of time, it should only be used if it does more good than harm. The maintenance therapy should help the patient feel better or live longer without prolonging suffering.
Patient Concerns About Chemotherapy
A study in the journal Cancer by Dr. Inga Lennes and her colleagues at Massachusetts General Hospital surveyed 125 newly diagnosed cancer patients who were receiving their first round of chemotherapy. The researchers wanted to see if the patients’ perception of chemotherapy and why they were receiving it matched their doctors’ reasons for giving it. Patients were asked, in writing, to choose from four possible responses describing the goal of their treatment as explained to them by their oncologist:
1) to decrease the chance the disease will return, also called adjuvant treatment;
2) to provide a prolonged time without any evidence of disease, also called cure;
3) to control the growth of the cancer without getting rid of it completely to prolong life; and
4) to reduce side effects and symptoms of the cancer to promote your comfort, also called palliation.
Patients were allowed to choose more than one answer. Patients who selected one or both of the first two responses were categorized as viewing their chemotherapy as curative. Those that selected the third or fourth response viewed their chemotherapy as non-curative.
Three out of four patients correctly identified their oncologist’s reason for prescribing chemotherapy. Nearly all of these patients (99%), however, were the ones being given chemotherapy to cure their cancer and keep it from coming back. Among the 25% of patients who did not correctly identify their oncologist’s reason for prescribing chemotherapy, two-thirds (66%) thought the chemotherapy would cure their cancer when, in fact, that was not the oncologist’s goal. Patients who were undergoing non-curative chemotherapy—to prolong life with cancer and reduce symptoms from cancer – had a harder time understanding what their oncologist hoped to achieve than did patients whose chemotherapy was curative.
There are many possible reasons why patients misunderstand the goal of their chemotherapy. Studies show that doctors are not good at communicating bad news and want to appear hopeful. They may provide written information that some patients can’t understand.
Physician and Patient Optimism
When the prognosis is bad (the patient is not going to survive the cancer), physicians may be deliberately unclear or vague, or they may be overly optimistic about the patient’s chances. As a result, patients have a difficult time accepting that their disease is incurable.
Studies have found that cancer patients want their doctors to “maintain an attitude of hope”, but doing so may mislead or confuse patients with advanced cancer. A small study of 28 patients in three hospitals in England taped the first consultation after the patient had received his or her diagnosis, usually after surgery to remove the cancer had been performed. They found that when doctors are discussing bad or uncertain news about a patient’s prognosis or treatment, they pair it with some positive information. For example, in one conversation between a patient with laryngeal cancer and his doctor, the doctor gave the bad news that his cancer probably would not be cured, quickly followed by hopeful news and the statement that there is a “very good chance” that radiation “will work.” This good news-bad news approach can confuse patients and result in unrealistic expectations of treatment.
A study in Australia, using recorded conversations between 118 patients and 9 oncologists, found that 3 out of 4 patients had been told that their cancer was incurable, and 85% had been informed of the aim of treatment. After giving the information, only 10% of physicians checked to see if the patient actually understood it. One way to check if the patient has understood is to have her explain to the doctor what she just heard in her own words.
A different study found that patients who incorrectly believed that their chemotherapy would cure their cancer were the ones who gave their doctors the highest communication scores. Clearly, doctors who put a positive spin on a patient’s condition may be the most popular, but their mixed messages are confusing to patients.
Patients with incurable cancer need optimism to help them cope with the news that they are going to die. While maintaining hope in the face of death is important, patients with too sunny an outlook can have unrealistic expectations of treatment.
Health literacy is the ability of patients to understand health information presented to them that they need to make appropriate health decisions. All patients face the challenge of making treatment decisions based on the information their physicians have provided them. This is especially true for cancer patients, who are faced with new medical terminology, unclear statistics, and often-vague prognoses. Experts agree that the lack of health literacy among cancer patients may make it difficult for them to understand their treatments and their prognosis.
Patients over the age of 60 have some of the lowest levels of health literacy, with as many as 80% struggling to understand paperwork given to them by their doctors, including consent forms. In the U.S., younger patients and patients who are native English speakers understand the purpose of their chemotherapy better than older patients or non-native English speakers.
Patients with low health literacy are less likely to ask questions when they don’t understand what they’re reading or what they’re doctor has told them. This is a chicken and egg situation: people with low health literacy lack the confidence or educational and cultural training to ask questions of people with authority (doctors). Meanwhile, the failure to ask questions and get doubts resolved contributes to low health literacy.
Over the last decade, there has been a shift in the medical community from the concept of informed consent, in which patients agree to the doctor’s recommended course of treatment, to the idea of informed decision-making, in which patents and doctors exchange information, ask each other questions, and come to a final treatment decision together as a team. This more patient-centered approach can help cancer patients understand the goal of their care.
In addition, research shows that cancer patients who asked their doctors at least three questions had a better understanding of their treatment options and were more confident in making decisions.
- 1 out of 4 patients receiving chemotherapy do not understand the goal of therapy.
- The lack of patient understanding is due to a number of factors, including poor and overly optimistic communication between doctors and cancer patients, low health literacy among patients, and the many new terms used in explaining chemotherapy.
- Patients who misunderstand the goal of their chemotherapy may opt for longer or more aggressive treatment than they would if they understood their prognosis better.
- To improve communication between cancer patients and their doctors, doctors should use the communication technique known as “ask, tell, ask.” Doctors first ask what the patient wants to know, then they provide the information the patient has asked for, and then they ask the patient to explain what they’ve just learned.8
- Doctors should regularly ask their patients to summarize what they have just heard, including the goal of the chemotherapy. Patients should ask doctors questions, including asking what terms mean as well as anything they are uncertain or worried about.
- Lennes IT, Temel JS, Hoedt H et al. Predictors of Newly Diagnosed Cancer Patients’ Understanding of the Goals of Their Care at Initiation of Chemotherapy. Cancer. 2012; DOI: 10.1002/cncr.27787
- National Cancer Institute. Chemotherapy and You: Support for People With Cancer. Accessed November 28, 2012. http://www.cancer.gov/cancertopics/coping/chemotherapy-and-you/page2.
- Thompson AM, Moulder-Thompson SL. Neoadjuvant treatment of breast cancer. Annals of Oncology. 2012;23:231-36. Doi:10.1093/annonc/mds324.
- National Cancer Institute. NCI Dictionary of Cancer Terms. Accessed November 9, 2012. http://www.cancer.gov/dictionary?CdrID=45768
- Owonikoko TK, Ramalingam SS, Belani CP. Maintenance Therapy for Advanced Non-small Cell Lung Cancer: Current Status, Controversies, and Emerging Consensus. Clinical Cancer Research. 2010;16:2496-2504. Doi:10.1158/1078-0432.CCR-09-2328.
- Leydon GM. “Yours is potentially serious but most of these are cured”: optimistic communication in UJ outpatient oncology consultations. Psycho-Oncology. 2008; 17: 1081-88. DOI: 10.1002/pon.1392.
- Gattellari M, Vaigt KJ, Butnow, PN et al. When the Treatment Goal Is Not Cure: Are Cancer Patients Equipped to Make Informed Decisions? Journal of Clinical Oncology. 2002; 20; 2:503-13.
- Weeks JC, Catalano PJ, Cronin A et al. Patients’ Expectations about Effects of Chemotherapy for Advanced Cancer. NEJM. 2012; 367:1616-1625. DOI: 10.1056/NEJMoa1204410
- Smith TJ, Longo DL. Talking with Patients about Dying. NEJM. 2012; 367:1651-1652. DOI: 10.1056/NEJMe1211160.
- Amalraj, Sunil, et al. Health literacy, communication, and treatment decision-making in older cancer patients. Oncology 15 Apr. 2009: 369. Academic OneFile. Web. 22 Oct. 2012.