Talking to Your Health Care Team About Treatment Side Effects

Side effects can vary from person to person and can be treated. A key to managing side effects is to be aware of them and communicate with your health care team when they arise. Report them right away—don’t wait for your next appointment.

Side Effects During and After Treatment

Side effects may occur and linger throughout treatment or arise in post-treatment. Side effects may include:

• Chemotherapy-induced nausea and vomiting
• Fatigue
• Mucositis (mouth sores)
• Neuropathy (nerve damage)
• Neutropenia and infections
• Diarrhea
• Constipation
• Hair loss
• Chemobrain (forgetfulness or difficulties concentrating)
• Change in appetite and/or weight
• Lymphedema
• Rashes or dry skin

Tips to Better Communicate With Your Health Care Team About Treatment Side Effects

Good communication with your doctor will help improve the quality of the care you receive. The following tips may help you better communicate with your health care team.

Start a health care journal. Having a health care journal or notebook will allow you to keep all of your health information in one place. You may want to write down the names and contact information of the members of your health care team, as well as any questions for your doctor.

You can separate your journal or notebook into different sections to help keep it organized.

Some of the things you may want to write down in your journal regarding treatment side effects may include:

• How long a side effect lasts
• The date and time a side effect occurs
• What impact the side effect has on your daily activities (for example, does pain keep you from sleeping?)
• How strong the side effect is (for example, if you experience pain, how strong is it on a scale from 0 to 10, where 0 equals no pain and 10 is the worst pain possible?)

Incorporate other health care professionals into your team. Your oncologist and oncology nurse are essential members of your health care team, but there are other health care professionals who can help you manage your care:

• Your primary care physician should be kept updated about your cancer treatment and any test results.
• Your local pharmacist is a great source of knowledge about the medications you are taking; have all of your prescriptions filled at the same pharmacy to avoid the possibility of harmful drug interactions.
• Make sure your oncologist knows of any other medical conditions you have, or any pain you are experiencing, so that they can consult with your primary care physician or your specialist if needed.

Remember, there is no such thing as over-communication. Your health care team wants to know about how you’re feeling overall, which includes your level of pain, your energy level, your appetite and your mood and spirits.

Prepare a list of questions and write down you doctor’s answers. Before your next medical appointment, write down your questions and concerns. Because your doctor may have limited time, you should ask your most important questions first, and be as specific and brief as possible. Taking notes will help you remember your doctor’s responses, advice and instructions. If you have a mobile device, you can use it to take notes. Writing notes will help you review the information later. If your doctor allows it, recording the conversation with your doctor gives you a chance to hear specific information again. Read CancerCare’s fact sheet titled “Questions to Ask Your Health Care Team” for more information.

Bring someone with you to your appointments. Even if you have a journal and a prepared list of questions or concerns, it’s always helpful to have support when you go to your appointments. The person who accompanies you can serve as a second set of ears. They may also think of questions to ask your doctor or remember details about your symptoms or treatment that you may have forgotten.

Keep important papers together in an accessible file. Keep your medical information in one place, such as a three-ring binder. This makes it easy to find what you need quickly, as well as to carry everything with you to appointments. Organize the information in the way that works best for you. For example, you might have different dividers for prescription information, important phone numbers, lab tests or medical bills.

Make sure you understand. If you don’t know what something means, ask. Make your questions specific and brief. Other tips include:

• Use “I” statements whenever possible—saying “I don’t understand” is more effective than “You’re being unclear.”
• Try repeating the information back to your doctor—“So you mean I should…?”
• If you understand better with visual aids, ask to see the X-rays or slides, or ask your doctor to draw a diagram.

Talk to your doctor about a second opinion. A review of your diagnosis and recommendations for treatment by another doctor is called a “second opinion.” This is often done to make sure you are getting the best advice. It is your right as a patient and gives you confidence in the medical care you are receiving. A second opinion may offer different treatment choices or agree with your present care.

Edited by Mary Hanley, LMSW