How to Be a Better Advocate for Yourself as a Patient

The ability to advocate yourself, especially as a breast cancer patient, can be incredibly powerful in shaping your cancer experience. It took me a while to realize that as a patient, I have an active and very important role in my medical care.

Yet I also realize that we’re never taught how to navigate the world of medicine from the patient seat. As a result, it’s easy to feel overwhelmed and develop frustration and confusion regarding your 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.

Do Your Homework

Doctor: “Do you have any questions?”

You: Blank stare

You, 5 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 down in front of our doctor to talk about them. It happens to all of us. Your doctor has an agenda for your appointment, and you can, too. By preparing for your office visits, you can optimize your time with them to meet all of your needs. I start by writing down all of my questions as they come to me so that when I’m with the doctor, I’m ready to have them addressed.

The same goes for any symptoms I’ve experienced since my last visit. Is my headache worse than usual or have I noticed some new swelling? I jot down the symptoms and any relevant details, like when they occurred, how long they lasted, and whether I took any treatments or not. Writing this down while it’s fresh in my mind makes it easier for me to share with your doctor.

Lastly, I bring all of my current medications (the bottles or a list of them) and new medical records, like test results or a consultation visit with a specialist to the visit with me. This helps keep the doctor up to date on how my health is being managed outside of their care.

Pro tip: State your agenda at the beginning of your visit so your doctor can tailor the appointment to address your concerns appropriately. For example, if you have a follow-up visit after chemo to see how you’re tolerating the medication(s) but you also have questions about an upcoming test they ordered, mention this at the start of your appointment. That way, 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 a thorough or fulfilling enough answer.

Ask Questions

Many patients feel intimidated by the idea of asking questions because they don’t want the provider to think they’re questioning their expertise. Others have a strong desire to please the doctor and try to do so by not questioning them. (Research backs this up.) That being said, I know that if I have a question or don’t understand something the doctor said, I absolutely deserve to ask for clarification about all matters pertaining to my health.

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 you maintain two-way communication. And remember: There’s no such thing as a stupid question! Even if I 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 questions that have helped me understand more about my health:

When you get a diagnosis:

  • What is my diagnosis?
  • How did I get this diagnosis? (From symptoms? From a lab test?)
  • What does this diagnosis mean?
  • What’s the prognosis, or expected course, of this diagnosis?

When considering tests or treatment options:

  • What are my options?
  • What’s 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 you receive at your doctor 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 (for example, a printed handout, email summary, or written notes).

Be Honest       

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

This extends beyond symptoms you may be experiencing to your preferences or even your satisfaction with the 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 I needed to see a female provider. Arrangements were made for that to happen.

Most important, 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 their attention, as they may not even be aware of your experience. This allows them an opportunity to clarify their behavior and intentions and/or adjust it appropriately.

Pro tip: State your preferences ASAP. For instance, everyone has different preferences about how they receive information — you might want to know the details of each test result and what it means, you could prefer a one-line summary, or maybe you’d rather the doctor explain it to a loved one instead. Don’t make your provider guess — be clear and tell them exactly how you want to receive medical information.

Being a patient isn’t 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.

My Oncologist Is My Rock

My relationship with my oncologist is a critical and cherished one. She is as much a part of my cancer battle as I am — the light guiding me through the muddy, shady path. In my urgent situation, I didn’t find her through a comprehensive selection process or from others’ recommendations. Rather, it was a series of chances that united us, but I know now she was meant to be my oncologist.

On paper, it may seem obvious why we got along so well. We’re both female, we’re both physicians and we’re both mothers. Although we related in these aspects, the depth of our relationship ultimately had nothing to do with either of these commonalities. I attribute my experience with my oncologist to her humanity and excellence as a provider.

I will never forget the first time I entered her exam room as a mentally disheveled young woman who’d recently received a devastating cancer diagnosis. She sat directly in front of me, our knees almost touching. Then she met my gaze with her graceful blue eyes and introduced herself. In that moment, I felt her genuine and comforting presence. An overwhelming sense of relief washed over me and the tears started to flow.

“We are going to figure this out,” she affirmed. I had no idea what kind of breast cancer I had, if I needed surgery or radiation, or if I was going to live or die, but I felt the power of having my oncologist with me, on my side.

In each and every conversation we had my oncologist remained receptive and patient, which deepened my conviction in her. Through all of my questioning — sometimes repeating questions (thank you chemo brain!) — she listened, kindly explained, and then checked my understanding to see if she’d answered my question. Although I know the busy, time-restricted schedule she worked within, I never felt it. When we were together, all her attention was on me.

I wasn’t just a patient in her office. I was a busy person with a budding family and career who happened to be diagnosed with breast cancer. My cancer connected us, but our conversations spanned all topics of life and I know I was heard because time after time my oncologist demonstrated that she understood me.

She acknowledged my beliefs, my values, and my goals. As she presented the best treatment options, she did so objectively, or “by the book,” and then explored each with me through my lens of my life. In this manner, my oncologist gained my trust. I knew she was acting in my best interest. I didn’t have to say many words for her to understand exactly what I was thinking; sometimes even before I realized what I was feeling, she knew. And it amazed me. She truly got me.

Being able to have this connection with my oncologist was incredibly empowering and positively impacted my experience with breast cancer. I am so grateful to have had her by my side. All individuals with cancer deserve to trust and receive the grace and compassion of their oncologist as I did.

When I Heard ‘Breast Cancer’, I Wasn’t Sure I’d Have a Future

I always suspected I might get cancer. My maternal side is riddled with cancer. My mother had ovarian cancer when she was pregnant with me in her late 20s. My grandmother had cervical cancer in her mid-40s. An aunt had breast cancer in her early 50s. I assumed it would only be a matter of time before I would be added to the family cancer tree, but I never thought it would happen before I had even turned 40.

I was able to receive a preventative mammogram at 35 due to family history. It was clear, and I was told to come back when I was 40.

Two months after my 39th birthday, I spotted a circular bruise on the back of my left arm and found what felt like a large hard fist near my left underarm. I called my primary care doctor, and she immediately wrote an order for a diagnostic mammogram, which then led to a biopsy.

My biopsy was on a late Friday afternoon on 9/11/15. It felt wrong and scary to have a biopsy of the mass in my left breast on such a nationally tragic day. I was told the results would be available within 24 to 48 hours. Since I was the last patient of that day, I was expecting the results either Tuesday or Wednesday.

So when my cellphone rang at 3:05 p.m. that Monday, I instinctively knew I should answer it even though I didn’t recognize the number. When I flash back to this memory, it is like I am suspended above my work cubicle, watching everything unfold.

I see myself running down the hall into an empty conference room.

I see my eyes filling with tears yet widening in disbelief.

I see my hand shaking while holding my phone.

“Megan-Claire, you have invasive lobular breast cancer. We don’t know the stage yet. You need to get a pen and paper and take some notes because time is of the essence.”

I will never forget the fear and panic crushed me like a tsunami after receiving the cancer call. Once I met my medical team, I was officially diagnosed with Stage IIA invasive lobular, ER+/PR+, HER2- in the left breast. It is the second most common type of breast cancer, but only accounts for about 10% to 15% of all invasive breast cancers.

It’s crazy how hearing those words completely changed the trajectory of my life. Every plan and dream I had up to that point became frozen because I didn’t know if I would survive breast cancer. I wasn’t even sure I would have a future.

Since I was diagnosed under age 40, I was often the youngest person in the infusion room. I had to work during all my treatments. I wasn’t even close to the typical retirement age. Fortunately, I was able to find fantastic online support aimed at adolescent and young adult cancer survivors (AYA) through organizations like Elephants and Tea, GRYT Health, and Stupid Cancer.

My diagnosis forced me down a path that no one could fully prepare for, including coming face-to-face with my own mortality at 39. I’ve survived 16 rounds of chemo, eight total surgeries, 33 radiation treatments, blood transfusions, multiple infections, and infertility.

Life is fleeting. The fear of the unknown and getting scans every 6 months for 10 years pushes me to live life with renewed passion and purpose because tomorrow is not promised.

How I Changed My Relationship With Fear

I’m 32 and I have no family history of breast cancer. So when my doctor ordered a mammogram, it seemed like an unnecessary test. I was certain the lump I had felt in my breast was simply a cyst or a fibroadenoma — two of the most common benign breast tumors. Breast cancer hadn’t even crossed my mind.

When I received my diagnosis of invasive ductal carcinoma, I was in disbelief, emotionally labile (that’s doctor speak for shaky), and confused. I kept asking myself:

  • How did I get cancer? 
  • How long has it been growing in my body?
  • Could it have been detected sooner if I performed regular breast self-exams?

Fixated on these questions, I drowned in devastation and denial, searching for something to blame for the fact that I had cancer. Every cause has an effect, right? But I’ll never know what caused me to get breast cancer.

It’s only natural to wonder how the hell I got to this point, but staying stalled in my past didn’t serve me in my current situation — a newly diagnosed breast cancer patient who needed to get a port placed to start chemotherapy ASAP.

I wasn’t ready to accept this new label, so I opened my mind to explore what it felt like to have cancer. I examined the thoughts and feelings coursing through my body, noting one sensation that prevailed: fear.

Fear of the unknown, fear of pain and suffering, fear of loss, and fear of death.

I didn’t want to feel fear. (Who does?) We’re taught that fear is bad, fear feels awful, and that we should avoid fear at all costs. Yet the more I resisted it, the more it seemed to persist, and the worse I felt. So I tried something different: I allowed it. I figured, what did I have to lose now?

Allowing my fear to surface, I noted it as a heaviness in my core that radiated icy-hot spikes through my limbs and a blossoming, steamy fullness in my cheeks. Fear didn’t feel good, by any means, but by sitting in it I realized that my fear, like all of my emotions, was just a vibration in my body. Nothing more — what a relief this was! Like that, my fear of feeling fear melted away.

I learned to recognize my fear, acknowledge it (“Hi, fear, I see you”) and sit with it until it went away. Sometimes it lasted longer than others, like in the days approaching my first chemo session, but it always passed. This is a secret every cancer patient needs to know, especially, when you’re diagnosed: Face your feelings, feel your feelings, and the feelings will fade away.

The more I practiced this process, the easier it became to experience all the emotions that arose when I was diagnosed with breast cancer. In fact, understanding myself in this way brought me clarity as to how I wanted to proceed as a young mom and doctor diagnosed with breast cancer and ultimately shaped my strength through my breast cancer journey.

No one ever expects to be diagnosed with cancer or is prepared for their own response to such news. If you’ve been diagnosed with cancer, I encourage you to approach your emotional experience with compassion and curiosity. Allow and acknowledge all of your emotions and move forward in your cancer journey empowered. You can’t control cancer, but you can control how you experience it.