Questions & Answers about Advocacy
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For Any Cancer Diagnosis
- Q.
My mother is 85 and was told she has stage 3 cancer. She doesn't seem to understand exactly what is going on and is passive. We're not that pleased with her doctors. I don't want to be pushy, but how can we help her?
A.Challenges that may affect older adults and their ability to make health care decisions include how they process information, how they cope with the stress of the diagnosis, and how their medical team communicates with them. With this in mind, family support can play an important part in your mother’s care. I’d start by asking your mother if she would like your help, and if so, what areas she would like help with. This might include meeting with her medical team to discuss her treatment plan or helping her prepare for her appointments.
Questions to ask about her treatment include:
- What is the recommended treatment and possible side effects?
- How could treatment affect other co-existing health issues?
- Is the goal longer survival, which may mean a more intensive treatment, or is it quality of life?
Ways to involve and organize your mother include:
- Take notes at her appointments or ask if you can record the discussion
- During the appointment, ask her if she has questions
- Repeat and review the information after the appointment, allowing her time to process information
- Keep a calendar to record her appointments
- Use a notebook to keep track of symptoms and side effects
- Create a file for all paperwork related to her diagnosis, including copies of important records
- Compile a current list of all her medications and phone numbers/addresses of all of her health care providers.
Your mother’s medical team is one of the most important aspects of her care, and as a health consumer she has every right to receive quality care. It is essential that older adults and their loved ones be able to openly and honestly discuss their care with their doctors and any potential difficulties that may arise. For more guidance please read, “Doctor, Can We Talk? Tips for Communicating With Your Health Care Team”. If she is not comfortable with quality of care she is receiving, she may need to explore other options. Though this may seem daunting, your mother’s primary care doctor or even a local hospital can provide her with referrals.
Answered by
Sarah Kelly, MSW, LCSW-R - Q.
I'm thinking of getting a second opinion. How should I approach this? Do I tell my doctor?
A.People who are diagnosed with cancer often experience a wide range of emotions–anxiety, sadness, anger, fear, confusion, as well as a sense of urgency to get into treatment as soon as possible. Usually with a new diagnosis there is a period of time, depending on the cancer type and stage, before treatment begins. During this time, getting a second opinion is considered a routine, essential and necessary component of one’s health care plan.
Many patients feel reluctant and resistant to seek a second opinion. Studies have shown that most patients and caregivers are concerned that asking their doctor about a second opinion will create an uncomfortable relationship with that doctor, which may negatively affect their medical care. Other patients may be confused by the complexity of the healthcare system, are too overwhelmed by their diagnosis or too intimidated, or are not aware that they have that right to a second opinion.
However, most medical professionals expect a patient to get a second opinion. In fact, some insurance companies recommend, and even require, a second opinion.
Discuss getting a second opinion with the doctor who diagnosed you. Most doctors welcome a second opinion. It provides them with either confirmation of their diagnosis and treatment, more details about their diagnosis, additional treatment options or recommendations for alternative diagnoses and treatments. Your doctor may have suggestions or referrals. If not, contact a medical society associated with your cancer, academic medical institution or a National Cancer Institute designated facility. It is strongly advised that one go for a second opinion at a different medical institution, since this will involve different clinics and pathologists. If your doctor is not open to, or responds negatively to the idea of a second opinion, you may want to consider whether this is the doctor with whom you want to work.
Here is a list of situations where a second opinion may be important:
- You have a rare, unusual, terminal or incurable cancer;
- You feel uncomfortable with your doctor, the diagnosis or you need confirmation;
- Your health insurance requires it;
- You want the medical opinion of a specialist for your type of cancer;
- The treatments offered has side affects or risks that you find unacceptable;
- The treatment options will result in unacceptable or unreasonable demands on your life and your family;
- Your doctor’s treatment goals are different from your own;
- You are interested in clinical trials or alternative therapies;
- Your cancer is not responding to your current treatment.
The American Medical Association’s Patients’ Bill of Rights states that “The patient has the right to and is encouraged to obtain from physicians and other direct caregivers relevant, current, and understandable information concerning diagnosis, treatment, and prognosis.” Obtaining a second opinion is regarded as a right.
CancerCare’s professional oncology social workers can answer your questions about getting a second opinion. To speak with a professional oncology social worker, call 800-813-HOPE (4673).
Answered by
William Anthony Goeren, MS, ACSW, SEP, LCSW-R, OSW-C - Q.
I want to ask my oncologist about other types of treatments, but am concerned she might think I'm questioning what she has recommended. Is this something most patients do and how should I bring up?
A.The issue of exploring “other” treatments, which differ from recommended treatments your doctor has prescribed, is a topic that many patients would like to discuss with their doctors. However, some patients report feeling concerned that this discussion could affect the relationship and quality of their care. Patients may feel that their doctors are so busy that the appointments are rushed and information is given in unfamiliar medical terms, or that they do not know what to ask or feel intimidated.
A patient’s relationship with his/her doctor is both a professional and personal one. We believe that our doctors and the health care team will be medically effective and, at the same time, compassionate in caring for us. Good doctor/patient communication is key, and communicating effectively with the doctor is a skill that may need attention and practice.
CancerCare’s publication “Doctor, Can We Talk?”: Tips for Communicating with Your Health Care Team suggests a number of recommendations:
Before the Appointment
Remember you are the consumer, and the best consumer is an informed consumer. Learn about your cancer and possible treatments. Know who is on your health care team, including the nurses, social workers and patient navigators.
Create a journal or binder of your cancer experiences. Note the dates of your appointments, the names and contact information of your health care team, as well as a list of medications with dosages. You can also keep a diary of side effects as well as questions that you have for your next appointment. Writing down questions before your appointment will help you feel more organized. If your doctor is open to this suggestion, send your questions to the doctor before the appointment.
During the Appointment
Write down your doctor’s comments, advice and answers to your questions. If you feel that this will not work for you, bring someone to the appointment who can do this for you or ask if you can record the appointment.
Try to be focused and to the point. Explain your cancer experience clearly and briefly, including symptoms and medication side effects.
Ask the doctor to repeat a comment, to use language that is easy to understand, or even to slow down. If something is unclear, repeat it to the doctor as you have heard it. Be assertive but also be understanding. If the doctor is in a rush, ask if there is another member of the team, such as a nurse or social worker, who can answer your questions.
Through the use of the Internet, there is an abundance of medical information as well as opportunities to connect with people in a similar situation. Doctors report that they are very aware that patients have greater access to medical information and are often more educated about their cancer and treatment than in years past. Many doctors are prepared and are available for more in-depth discussions with their patients. Keep in mind that doctors may not know all there is to know about every cancer and its treatment. Many doctors welcome information, questions and discussions of other treatments. In fact, some physicians have stated that they have learned about other treatments because of information that a patient presented.
It is suggested to ask your doctor how he/she feels about your bringing in research and information about your cancer and asking questions about “other” treatments. This will give you some insight as to what your doctor may or may not feel comfortable discussing.
Professional oncology social workers can help you learn to better communicate with your doctor and health care team. Call CancerCare at 800-813-HOPE (4673) to speak with a social worker.
Answered by
William Anthony Goeren, MS, ACSW, SEP, LCSW-R, OSW-C
For Rare Cancers
- Q.
I was just diagnosed with a very rare type of cancer. My oncologist has admitted that he has not treated this type of cancer before, and I feel uncomfortable having him guide my treatment planning. Where can I get additional information about my cancer and typical treatment approaches?
A.It is understandable that you have questions after receiving your diagnosis. It’s also understandable that you wish to consult with a medical professional who is both familiar with and has experience in treating your type of cancer. Although oncologists, like your doctor, are specially trained to provide medical care to people diagnosed with cancer, many have specific areas of expertise. As you face important treatment decisions, it is important to have vetted information to inform your choices, provided by someone who specializes in your type of cancer.
Many people choose to get a second opinion in the circumstances you describe. A second opinion provides an opportunity to have your diagnosis and projected treatment plan confirmed by another medical professional. These consultations may also offer additional medical information about your diagnosis and additional recommendations or treatment options to consider. Speak with your oncologist about your interest in consulting with a specialist. He may have referrals for you. Otherwise, reach out to an organization associated with treating your type of cancer, academic medical institution, or National Cancer Institute-designated facility. Although your cancer is rare, there may be medical professionals who are familiar with the disease, available to guide you. NCI also offers additional information in their fact sheet How to Find a Doctor or Treatment Facility If You Have Cancer.
CancerCare’s professional oncology social workers are able to answer any additional questions you may have about getting a second opinion. To speak with an oncology social worker, please contact our Hopeline at 800-813-HOPE (4673). CancerCare also has e-booklets and publications on improving communication with your health care team.
Answered by
Caroline Edlund, MSW, LCSW-R