Most of us would have no trouble advocating for ourselves if we fell down the stairs and broke a leg. “Doctor it hurts…” “I need something for the pain…” “How long do I have to stay off it?” “Can I use a cane instead of crutches?” “Do you think physical therapy would help me get back on my feet faster?” We pepper the doctor with questions at each visit, anxious to get on with our lives. But somehow, many of us are hesitant to engage in the same sort of dialog when it comes to cancer.
It can be hard to ask for what you need when you’re scared to death, hard to ask for what you deserve when you think you’re lucky to be alive, hard to know what’s right when nothing in your body or your mind feels right, and hard to take on one more responsibility when you feel overwhelmed by what life has just dished out. But, advocating for yourself can help you ensure you get the best care. Asking for information and sharing in the decision-making process with your care team can help ensure you get what you need to get through your cancer ordeal. And many patients report feeling their symptoms are better managed if they communicate effectively with their doctors to advocate for themselves.
We are all different, with different cancers, different bodies, different personalities, and different needs. No matter how wonderful your care team might be, you know your body and needs better than they do. They are the experts on cancer, but you are the expert on you. That’s why it helps to work together. There’s another benefit to self-advocacy too. Often, life feels out of control when you have cancer, and that lack of control adds to stress. By partnering with your care team, you regain a little bit of control over your life and your cancer. This sense of control reduces the stress of cancer, and less stress improves healing, which is the goal.
But, because we’re not all wired the same, not all of us want to be involved in our care decisions. In fact, as many as 30% of patients prefer to leave the whole thing in the hands of the professionals—“Just tell me what I have to do, Doc”—but the rest of us want to be involved in some way or another.How much or little about your disease, your prognosis, your treatment options do you want to know? You get to decide. Ask yourself, “What can I handle? Will it help me to know more? How involved do I want to be?” There is no right or wrong answer. This is your cancer, your body, your decision. It is up to you, not your doctor, or your family and friends, although they will likely all have opinions.
Initiating the Dialog
Often, the first opportunity we have to advocate for ourselves is choosing a doctor. Most of the time, the diagnosing doctor will refer you to a specialist. That’s a good place to start, and if you have had a long-standing relationship with the diagnosing doctor and trust her recommendation, that may be enough. But, choosing the right doctor for you is about balancing expertise and personality.
You want to make sure your doctor knows a lot about your cancer, is up to date on treatment protocols and plugged in to the latest news on clinical trials. But you also want to feel that your doctor is treating you as a whole person. Are you comfortable interacting with the recommended doctor? Can you have a conversation with her? Do you feel you have her full attention when you see her?Can you talk to her about other treatment options, complementary care, clinical trials, support services? Do you want a second opinion? No doctor should be offended by your request for a second opinion at any point in your treatment. As Jane said when making a choice between experts in her rare cancer, “One went nuts on me when I asked about a different approach, making it perfectly clear that I didn’t want to work with her.”
Questions, More Questions
Once you know you want to be involved and have a doctor you feel you can partner with, you might consider asking questions, such as:
- Why is this the right treatment for me?
- Are there other treatment options?
- What are the risks of this treatment?
- What side effects should I expect from this treatment?
- How can you help me deal with those side effects?
- What symptoms can I expect from the disease and how will we manage them?
- Would a clinical trial be appropriate at this point in my treatment?
- Can I/Should I be exercising? If so, how much and what type can I do?
- Should I make any changes to my diet?
- What is this treatment likely to cost?
No question is too small. Sometimes, we feel so grateful to be alive, to be receiving care, we don’t think we have the right to ask for more. And sometimes it can feel as if we are “bothering” the medical team by asking questions. Ask. Bother. It’s your job as a patient to do so. Questions like, what do I do about the fact I’m having hot flashes all over again? When will my hair grow back? Why am I so tired all the time? Is it always going to hurt to have sex now?
In fact, questions about intimacy are some of the most challenging. We feel shy about asking, particularly if the cancer team is new, not doctors and nurses we’ve known for years. And doctors may be more hesitant to bring them up as well. Conversations about emotions, another subject doctors don’t always raise, can also be challenging. Yet, depression, anxiety, loss of purpose, confusion about your role in life are common emotions during cancer. So, if you are feeling overwhelmed by your emotions, ask your care team for help with that too. Perhaps they can offer some insights or assistance, or a referral to supportive services.
Your Choices Matter
And then there is the question of paying for all this care. Cancer is tough on the bank account too. The cost of treatment, transportation to and from, paying for extra support with the home and the kids. Not being able to keep the same schedule at work. But there are resources to help, so if you are feeling the pressure to skip treatment because you think you can’t pay for it, talk to your team. Most hospitals and cancer centers have some type of social services. But often you have to ask for support in order to get the process rolling.
Advocating for yourself is appropriate at any time in your cancer experience. It’s your right to ask for pain medication, to say this treatment is too hard, let’s try a different one. To tell your doctor you want to participate in a clinical trial. To say no, I don’t want more treatment. To ask for hospice care. Even, to ask for a different doctor. Just because you start off with one doctor, doesn’t mean you have to stick with him throughout the entire process. Sometimes a new doctor will see your situation differently, think of alternatives your first doctor didn’t. You can always change your mind. It’s your choice.
Making Time for Questions
Given how busy most doctors are, with tightly packed schedules and 20-minute appointments, advocating for yourself can be hard. It helps to make a list of the questions you want answered and put them in order of importance. Before your doctor rushes out the door to see the next patient, make sure you get answers to your top three questions. And if you have more questions than the doctor has time for, let her know that you have other questions and ask when you can get them answered. Stop at the front desk and schedule time for a call or another brief chat to get some answers. Maybe there is a nurse or other member of the team that can help. Don’t leave the office feeling you haven’t gotten the information, or the plan to get the information, you need.
Many people find it helpful to bring someone else to appointments—someone who can take notes while you ask and the doctor answers, so you can be focused on your needs. A partner, a son or daughter, a friend. Someone who will help record the important information and remind you about your questions. And if you feel uncomfortable asking the tough questions, your friend can ask them for you. And speaking of recording, you can even ask the doctor if you can record the conversation on your phone or if she could write down the most important things for you.
Some people find it helpful to be informed before asking questions and want to do some homework in advance. There are good sources for information on the internet, but please be thoughtful about where you look. A chat room with people sharing horror stories probably isn’t going to help. Check reliable sources, such as American Cancer Society (Cancer.org) or American Society of Clinical Oncologist (Cancer.net) or the National Cancer Institute (Canger.gov). Also, try reputable support organizations such as Cancer Support Community and CancerCare. There are other resources too, but these are a good place to start. And sometimes, you can learn enough to ask more questions or even suggest clinical trials or other treatments your doctor hadn’t considered.
Advocating for yourself at home is also important. So often we feel like we don’t want to be a burden on others. This is exacerbated if we are used to being the one who provides for and cares for others, the natural caretaker. But now is a time to ask for help, and to accept it when offered, rather than trying to continue meeting everyone else’s expectations. Learn to say “no, I can’t do that.” How is anyone to know you can’t if you don’t tell them?
Self-advocacy doesn’t mean you have to go march in some color-coordinated ribbon parade, become the leading expert in your cancer, or dictate your treatment plan to your doctor. But, by recognizing that you are the leading expert in you, and sharing that expertise with your doctors, you can be a better partner to your care team. And that can help lead to better health.
Hagan, TL, Gilbertson-White, S., Crane, SM, et al. Clin J Oncol Nurs. 2018 Feb 1; 22(1): E23–E30. doi: 10.1188/18.CJON.E23-E30
Schuler, M., Schildmann, J., Trautmann, F. et al. Support Care Cancer (2017) 25: 2753. https://doi.org/10.1007/s00520-017-3686-8