Decades ago, patients simply followed their doctors’ instructions and may have felt uncomfortable asking their doctors questions.
Today, patients and physicians want better communication, especially when dealing with a disease as serious as mesothelioma.
Don’t be afraid to ask the doctor or nurse to explain a medical term you don’t understand, or draw you a simple picture to help you better comprehend what is happening in your body.
The truth is patients who communicate well with their health care team often are:
- more satisfied with their care
- emotionally healthier
- more likely to follow doctor’s instructions
- better at managing their symptoms
Luckily, there are some strategies that can close that communication gap.
Keep a Notebook Handy with Your Medical Information
It’s helpful to have all your information in one place.
A notebook or a binder will allow you to keep copies of your lab results, diagnostic reports and your treatment schedule in one place. Ask your oncology nurse for all relevant phone and fax numbers, including after-hours numbers and keep these in your notebook.
Some patients keep track of daily changes in their levels of pain, energy, nausea, shortness of breath, sleep and other mesothelioma symptoms. It’s helpful letting your doctor or nurses know how these symptoms fluctuate over time so your health care team can better understand and manage them. It is also a good idea to keep a list of your current medications in your notebook.
Prepare a Set of Questions to Ask Your Doctor or Nurse
Prior to your visits or phone calls with your oncologist or their staff, make a list of questions you have about your cancer and treatment plan. A few questions to consider include:
- What type of mesothelioma do I have?
- What stage is my cancer?
- Where exactly is the cancer in my body?
- What are my treatment options?
- What is the plan if my current treatment does not work?
- How will you determine in my treatment is working?
- What are the side effects of my treatment?
- How often will I get scans or blood work?
- Who do I call if I have questions or concerns between office visits?
- How will I know the difference between normal side effects and a serious health issue?
Bring an Extra Pair of Eyes and Ears to Your Doctor Visit
Bringing a loved one to your oncology appointments or treatments can minimize the risk that you miss an important piece of information.
An extra set of eyes and ears is always helpful because we don’t always remember everything the doctor or nurse says.
Ask About Other Sources of Information
Ask for written or online information about your treatment and how to manage side effects. Most pharmaceutical companies have a great deal of information on their websites about the medications they manufacture. Use these as a resource.
Most oncologists these days will support your request for a second opinion or referral to a mesothelioma specialist.
Understanding your diagnosis and treatment plan leads to a less stressful and healthier quality of life during and after your mesothelioma treatment. Keeping the lines of communication open is key to better outcomes in your treatment.