Dr. Angela Patterson is a two-time breast cancer survivor. She was first diagnosed with stage IIB triple negative breast cancer in 2006 when she was 36 weeks pregnant. 

 to chronicle that experience. She was diagnosed again in 2020 with hormone positive DCIS.

Inspired by survivorship, she returned to college 20 years after earning her bachelor's degree in accounting. She went on to earn a master’s degree in predictive analytics and a doctorate in business administration.

Angela is a wife, mother to a neurodiverse, transgender teen, dog mom, analyst, instructor, poet and writer. She has also discovered a passion for gardening.

Angela Patterson

“Be a pest. Do it.” Those words from a friend are written on a piece of paper that I keep rediscovering in my mess of a home office. The advice was intended for job hunting, but I’ve found that it applies to self-advocacy for medical care as well.

For example, while in treatment the first time, I ran across a series of charges that didn’t make sense. When I called my insurance company and challenged this, they found that the cancer center was electronically sending charges in a batch that started transmitting before midnight and finished after midnight.

The result was that my activity appeared on two different dates, triggering the system to incorrectly bill me as though I had seen the doctor on both days. So, with one phone call, a pleasant attitude and a bit of patience, the financial burden of cancer treatment was lowered since the insurance customer service person removed the extra charges while I was on the phone.

When I dealt with cancer the second time, patient portals had become a thing. With a portal, I got to see test results and visit summaries for the first time.

When I sat with the pre-op counselor before the surgery to remove the cancer, I asked if the hospital would post the pathology results on my portal. The counselor didn’t know, but she doubted it.

“It’s my data,” I told her. “I want to see the pathology of my own cancer.” I was so insistent that she gave me the proper paper form that would make sure I got the report by mail. The hospital eventually posted the pathology results to my portal, but I felt much better knowing that I would get answers sooner than at the next visit with my doctor.

Part of being a patient, it seems, sometimes means asking questions about how processes work. It can be hard to know the right questions to ask, but people are generally patient and kind as I fumble along. Here is where it can really pay off to “be a pest.”

For example, I had a mystery mass. A CT scan inspired my oncologist to order a biopsy. The breast center I chose told me to wait for them to call me to schedule the biopsy. Waiting to schedule a biopsy, of course, can be a special torment because you don’t know if you have a serious problem or not and you won’t get answers until the biopsy is over and the lab results are back.

A week later, I realized they hadn’t called to schedule anything. It was time to become a pest.

I called the breast center. Here’s the conversation in short form:

Me: Why haven’t we scheduled the biopsy yet?

Scheduler: We can’t. We need copies of your imaging first so the radiologist can make a plan. We must have the plan before we can schedule.

Scheduler: Monday. It’s odd. We should have had them by now.

Scheduler: Yes! It might help things move along if you do.

I started with the mammogram. The imaging place couldn’t find the request from the breast center, but they guided me through my patient portal to the request form. Within a couple of hours, the breast center had the images. Boom!

The CT imaging place also couldn’t find the breast center’s request. They also set the electronic delivery of images into motion when I told them the delay was holding up the scheduling of a biopsy. Going one step further, they let me know that I could pick up a physical CD of the CT images if the electronic transmission didn’t happen soon enough. That way I could be sure the breast center got the images that day. I felt reassured to have another option. Happily, the images were transmitted electronically later that day.

It felt so empowering to (1) have a means of discovering the reasons for inaction, and then (2) do something about it.

The person I was 20 years ago would have fretted while I waited for the breast center to call me to schedule, but I probably wouldn’t have proactively contacted them. These days, I see that it’s okay to check on things that don’t seem right. It’s okay to ask questions until I understand the answers.

I have noticed that most people willingly cooperate however they can, so long as I’m not belligerent. I also use things like Sudoku puzzles to distract myself during long periods of music on hold, because music on hold is a special type of torment…

When it’s your body, your data, your health, then it is absolutely your right to self-advocate.

Practicing self-advocacy is not being a pest. Not really.

Instead, self-advocacy is just taking care of yourself. Self-advocacy is healthy for your state of mind just like a nutritious diet is healthy for your body.

So, give yourself permission to be a “pest” as often as needed. Do it.

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Being a self-advocate also means self-care.

It’s Best to ‘Be a Pest’ When Self-Advocating

When I had questions, he patiently answered each one to my satisfaction and never made me feel stupid for asking. He never made me feel rushed. Instead, I felt respected and supported.

When I felt beat down from chemo and speculated that maybe I would just stop getting infusions, he showed me a chart of how much better my chances of survival would be if I followed the protocol to completion. That convinced me to stay.

During and after treatment, he made me feel 

. When my general practitioner was baffled as to why the arm that had had the port for chemo would swell painfully every time I got an injection, my oncologist figured out the cause. He even read my cancer blog.

I felt like this person was not just an excellent doctor, but an amazing human as well.

I had no idea that his job took a heavy emotional toll on him until I read 

 This wonderful book contains a collection of Dr. Remen’s experiences as a pediatrician and as a counselor for people who work with patients who have life threatening illnesses, and her experiences are told as concise, self-contained stories recounting people’s situations, lessons learned and healing insights. The stories are in turns sad, uplifting and thought provoking.

made me aware of two things I had never considered during treatment.

Thing one: Medical school does not teach future doctors how to handle losing patients.

Thing two: Americans as a people do not know how to support one another’s grief in a helpful manner. Culturally, we get it wrong.

I remember how people tried to cheer me up during the dark days of treatment. I knew they meant well, but typically the words they intended as comfort ended up sounding like empty platitudes. I often found it less stressful to be alone than to be around people who found my distress so painful that they would say anything to try to relieve it. Perhaps those experiences contributed to cancer making me feel so isolated while I was in treatment.

What they could have done better would have been to just acknowledge that the situation was awful and leave it at that. Truly. One of the most helpful extensions of support for a grieving person is to acknowledge their pain without trying to fix it; yet that is surprisingly difficult to do.

Dr. Remen wrote about how hard it was to watch families experience crushing grief when she had just delivered the news that their child was going to die and how it tore at her when she couldn’t save a patient. She also pointed out that to deny one’s grieving is to deny the path to healing. I imagine that is why it is so damaging to suppress one’s feelings.

I talked to my oncologist about it during a checkup. I said it must be hard to see patients die.

This was years ago, but I vividly recall how he agreed that yes, he would very much like to find himself out of a job because cancer had been cured. He also confirmed that yes, it takes an emotional toll to see patients suffer and die. It was my moment to 

 him the way he made me feel heard and I thanked him for hanging in there despite the challenges.

I don’t agree when someone rants about how Western medicine is a racket with regards to cancer care and “they” only want to keep you coming back rather than cure you so they can get rich off your illness. If that applies to anyone, it must be a small minority. Most healthcare professionals truly want a cure.

My original oncologist retired years after I moved. I still think he’s an amazing human.

I’m also deeply grateful that he made those emotional sacrifices as a person exposed regularly to suffering and tragedy. He helped a lot of people in his work as an oncologist. Cancer diagnosis and treatment was slightly less awful for me because he was there, being kind as much as he was professional.

My first oncologist was the nicest man. I only gave him up because we moved to a different state.

The Grief Oncologists Bear

When I had my breast biopsy prior to my second diagnosis, it was my first time to experience a biopsy. That’s because the first experience was atypical and the need for bravery was shifted.

The first time, I was 36 weeks pregnant when diagnosed. The lump I discovered was surrounded by fluid, according to the ultrasound (the only imaging that was safe to perform on a pregnant person). The fluid around the tumor gave my breast surgeon the impression I had an infection rather than cancer. It wasn’t until we were in surgery to remove the “benign mass caused by pregnancy hormones” that she recognized the mass as cancerous. She got a sample of the tumor confirmed as cancer while I was sedated, then she performed a lumpectomy.

So, for my first diagnosis I went into a simple procedure for a benign, mystery mass and woke up from general anesthesia to receive a cancer diagnosis. It was a bad, bad day and a complete shock followed by childbirth, chemo and radiation.

The second time, a mammogram caught the cancer in the other breast in the earliest stage (DCIS), prior to forming a tumor breaking out of the ducts where it originated. Before we had any details on pathology or could make a plan for treatment, we needed the biopsy to confirm that it was cancer.

In some ways, biopsies are harder than surgery. You’re awake. The local area is numbed but you can still feel pressure. Most importantly, you have to remain very still while something is done to you and the urge to run away can be strong.

As I approached the room with the equipment and the personnel, I keenly felt a wave of fear. My husband wasn’t even allowed to be in the building with me because this was 2020 and COVID was gripping the world. Nobody could stand in my place, and I couldn’t sleep through it. I needed something to help me cope.

 ages ago. On the day of the biopsy, I thought of the Litany Against Fear that the Bene Gesserit would recite. I misremembered some of it, but the jist was that you are some kind of bulwark. Fear is separate from you. It can crash over you, around you, and through you, but it cannot defeat you. Once the fear has gone, only you will remain.

The thought of fear washing against something that did not move reminded me of big rocks in a fast-moving river when I did a bit of white-water canoeing years ago. That image brought the Litany Against Fear to life and suddenly I had not only a coping mechanism but a path to ferocity and defiance.

Yeah, water may wear down a rock over time, but for this procedure on this day, I, the big, freaking rock, would remain. (I might have used a different word for myself that begins with “f” and ends with “ing,” but I settled on “freaking” as the perfect word I could repeat in mixed company.) Who needs full reality when you’re grasping an image to manage fear?

When I had to get into position on the stereotactic table, had to stay still while the needle injected local anesthetic (which stung), had to remain as still as possible while the special needle made a series of tissue cuts for the biopsy, I imagined myself as a big, freaking rock with my fear crashing against me, around me and over me. I imagined my fear as water at first flowing through me and then the water draining away so that only I, the big, freaking rock, remained.

I thought of being so big and so strong that the water would have to reshape itself to accommodate me and the imagery brought fierceness and fortitude. I remembered to breathe. I resisted the impulse to run away. I actually smiled a little. And I got through the biopsy.

When I had to later endure another round of breast biopsies, this time with the aid of an MRI so things took much longer, that was more difficult. Still, the image of the big, freaking rock helped.

Later, right before my second lumpectomy, I had to stay still again in a mammogram machine for them to thread a wire through my breast that would guide the surgeon later. I used the big, freaking rock image once again.

We tend to look back at complicated experiences like school, relationships, weddings, pregnancy, childbirth, buying homes, getting new jobs, etc. And we assimilate the mountain of tiny details, mushing them altogether into generalized memories. We forget how many times we had to focus on one small step at a time, and how hard some of the small steps really were.

I am that big, freaking rock. After the fear is over, after the waters of trauma have receded, I may be bloody for a while, but I am fierce. I will endure. I will remain.

Big, Freaking Rock: A Cancer Biopsy

The first time I had cancer in 2006, I was more passive and more trusting.

My breast surgeon had a personal preference for a port in my arm rather than the chest, so that’s what she did without discussing pros and cons with me. A port in the arm requires a blood thinner and my dosage turned out not to be high enough, so my body produced blood clots and a month later my arm started hurting. I called the surgeon’s office on a Friday and they paged her, but she had gone camping and never got the page. I did not try a second time, so I suffered all weekend with a steadily worsening condition that left me with permanent vascular damage from post thrombotic syndrome.

I later learned my surgeon expected me to call the cancer center for any problems like that. I had naively expected her to be the one to help me since she was the one who installed the port. The miscommunication and subsequent consequences taught me a lesson: I could not hand over my care blindly to anyone else. There were limits to their involvement.

When I was diagnosed a second time, which was during the 2020 COVID shutdowns, I needed a completely new care team because I had moved to a different state and I attended most appointments alone due to COVID policies. My new oncologist, a man, made a comment that was condescending. It sparked an internal battle about whether should try educating this arrogant man in how to speak to women. Did I have the energy for that battle at a time when I felt stressed and vulnerable?

I decided to find a new oncologist. Moreover, I conducted an interview during the first appointment to make sure I felt comfortable working with her.

While the hospital where I had gotten my biopsy was staffed with mostly caring and competent nurses and administrative staff, the radiologist ignored me when I made it clear multiple times that I wanted a positive diagnosis to be delivered directly to me and not just to my oncologist. I had already had my annual checkup with the oncologist, you see, so I had no reason to return that year unless cancer created a reason to return.

What happened? The radiologist left me in the torment of not knowing all weekend and into the following week after a Thursday biopsy, wondering if I had cancer or not. He alerted the oncologist’s office the day after the biopsy, but I did not get an answer until early the next week after leaving multiple messages and finally speaking to his assistant because he would not return my calls.

I decided my money and my insurance company’s money could be better spent with people who would listen to me, so I never returned to that hospital, its doctors, or its breast center.

When I went through radiation therapy, the radiation oncology nurse gave me a packet of instructions that obviously had not changed in ages. It included advice about the avoidance of deodorant and restrictions around topical creams/ointments considered safe to use during treatment that were not based on evidence but were instead based on assumptions never actually proven with research.

How did I reach that conclusion? It just so happened that I was in grad school at the time, working on a doctoral degree and preparing to start the dissertation phase. I had been taught how to conduct research and how to use critical thinking to assess the validity of statements. When I researched peer reviewed articles, looking for sources within the last five years that addressed the safety of using deodorant during radiation therapy for breast cancer where the radiation beams could potentially reach the armpit, I learned that the scant studies conducted in this area found no skin reactions statistically more severe for people who used deodorant than for people who did not. It did not matter whether deodorant was applied thickly or lightly, and the timing of deodorant application to treatment did not matter.

Likewise, my research found that ingesting foods and dietary supplements with antioxidants could work against the benefits of radiation therapy (like the nurse said), but the application of topical creams that included antioxidants, such as bag balm or calendula cream, did not put patients at risk. In other words, the nurse’s advice was wrong. The doctor backed up my wish to use calendula cream on my skin, but he would not tell the nurse to stop miseducating patients because she did not report to him.

So, I wrote a letter to the executives of the cancer center’s parent company and presented my research and sources. They conducted their own investigation and eventually agreed to change their standard of care protocols.

The person I was before I had cancer would never have stood up for myself like this. The person I became after cancer is stronger, fiercer, more tactful and less willing to put up with facilities and medical professionals who do not treat me with professionalism and kindness. I’m not a jerk about it. I just don’t put up with crap.

These days I’m using that mindset of how to look after myself and applying those lessons to care for a parent with dementia.

Angela Patterson

It’s Best to ‘Be a Pest’ When Self-Advocating

The Grief Oncologists Bear

Big, Freaking Rock: A Cancer Biopsy

How Cancer Has Changed My Mindset

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