3 Steps to Better Advocate for Yourself as a Cancer Patient

Hi, I'm Dr. Kavita Jackson- ER doctor, 2020 breast cancer survivor, and Your Cancer Life Coach. From having spent time on both sides of the curtain, as a medical provider turned breast cancer patient, I have gained useful insight into the practice of patient advocacy. As a provider, I understand what it's like to best understand your patient's concerns and desires. As a patient, I also have experienced the challenges of trying to express myself effectively to my medical team.

The ability to advocate for yourself, especially as a cancer patient, can be incredibly powerful in shaping your cancer experience. Often people don't realize that as a patient, you have an active and significant role in your medical care. Yet, we are never taught how to navigate the world of medicine from the patient's seat and, as a result, can feel overwhelmed and develop frustration and confusion regarding our diagnosis and treatments-- which is the last thing you need on top of dealing with the emotional impact of a cancer diagnosis. By practicing the following steps, you can conquer your medical journey by getting your care team on your page, on your terms, and with your best interest in mind.

1. Do your homework.

Doctor: "Do you have any questions?"

You: ::blank stare::

Five minutes later, as you're driving away from the office: "Oh yeah, I forgot to ask her about that rash, and I needed a prescription refill..."

Sound familiar? Our most burning concerns tend to escape us just as we sit in front of our doctor to talk about them. It happens to all of us. Your doctor has a plan for your appointment, and you can too. By preparing for your doctor's visits, you can optimize your time with them to meet all of your needs. Start by writing down all your questions as they come to you so that when you're with your doctor, you're ready to have them addressed.

The same goes for any symptoms you experience since your last visit. Is your headache worse, or have you noticed some new swelling? Jot down the symptoms and any relevant details, like when it occurred, how long it lasted, and whether you took any treatments or not. Writing this down while it's fresh in your mind will make it easier for you to share with your doctor.

Lastly, bring all of your current medications (bottles or a list of them) and new medical records, like, test results or a consultation visit with a specialist to help them stay up to date on how your health is being managed outside of their care.

Pro tip: State your agenda at the beginning of your visit so your doctor can tailor your visit to address your concerns appropriately. For example, if you have a follow-up visit after chemo with your doctor to see how you're tolerating the medication(s) but you have questions about an upcoming test they ordered, by mentioning this at the start of your appointment, your doctor can make sure to allocate enough time for your questions. Waiting until the last 2 minutes of the appointment to raise your questions can be a disservice to you as you may not receive as thorough or fulfilling of an answer.


2. Ask questions

Many patients can feel intimidated by asking questions of their provider because we don't want them to think we are questioning their expertise or because, as research shows us, we have a strong desire to please our doctor and try to do so by not challenging them. That being said, if you have a question or don't understand something your doctor said - you absolutely deserve to and should ask for clarification about all matters pertaining to your health.

Often, misunderstanding your health care can lead to unnecessary fear, anxiety, and confusion that could be relieved by a simple clarification. Thus, I think a patient-provider relationship functions best when two-way communication is maintained. And remember: there is no such thing as a stupid question! Even if we ask the same question more than once or ask the same question to different providers.

If you're not sure what to ask, here are a few elements I suggest you seek to understand about your health:

Diagnosis

What is my diagnosis?
How was I given this diagnosis (from symptoms? from a lab test?)?
What does this diagnosis mean?
What is the prognosis, or expected course, of this diagnosis?

When considering Tests or Treatment options

What are my options?
What is the purpose or goal of each option?
What are the potential risks of each option?
What are the potential benefits of each option?
What would you do and why?

Pro tip: The amount of information we receive at our doctor's visit can be daunting and difficult to remember. Ask how you can access this information after the visit to refer to or share with others (e.g, a printed handout, email summary, written notes).

3. Be Honest

Although honesty with your provider can be uncomfortable or embarrassing for some, it truly is the best policy. No matter what you are sharing with your doctor, it is only beneficial to you to disclose exactly what's going on and what you're thinking to the doctor. Often, medical decisions are made and actions are taken (or avoided) based on the information you provide your doctor, so it is vital to be honest and tell your doctor everything.

This extends beyond symptoms you may be experiencing to your preferences or even your satisfaction with your provider. Your health is more than just what's happening with your body and it all can impact your health experience. Don't be shy. For example, I have a preference for female providers only, so when my female oncologist left the practice and I was reassigned to a male provider, I called the office to tell them that I needed to see a female provider, and arrangements were made for that to happen.

Most important of all, if you sense an issue with your provider or feel your relationship is tense or troublesome, please say something. It's best to bring it to your provider's attention as they may not even be aware of your experience. This allows them an opportunity to clarify their behavior and intentions and/or consider and adjust it appropriately.

Pro tip: State your preferences ASAP. For instance, everyone has different preferences in how they receive information-- some want to know the details of each test result and what it means, while others prefer a one-line summary, and others would rather their doctor explain it to a loved one instead. Rather than leave it to your provider to guess, be clear, and tell them exactly how you want to receive medical information.

Being a patient is not easy. It can feel like cancer robs us of so many important pieces of ourselves with our control as individuals being the most devastating loss. By following these steps you can harness your power as a patient and guide your experience based on your values and desires.

Kavita Jackson, MD

Your Cancer Life Coach


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