Finding my patient voice through breast cancer treatment

May 18, 2025

Tonight, at a tribute to Dr. Jack Wennberg, I was reminded that patient-centered care was once a taboo topic. What I take for granted when I visit my doctor was a win achieved through years of pushing the limits of patient outcomes research. Working alongside this nation’s leading health services researchers had already shed new light on this centeredness for me. However, in a place known for patient-centered care, I had a lot to learn about how to stay centered in my own story once cancer treatment began.

I spent the better part of 2024 undergoing treatment for breast cancer. “It’s your usual garden variety cancer” I told a friend. I wasn’t worried after the diagnosis. I had my surgery scheduled, and the MRI had indicated that it might not have spread far, maybe a couple of lymph nodes. It was my left side, the breast that had produced four times as much milk as my right one when my daughter was an infant. There was always something about that breast that seemed over the top, I thought. The surgery seemed uncomplicated, and a friend who is an oncologist, had ensured I would see a well-regarded surgeon. The surgeon was reassuring about my prognosis, and as predicted, all went smoothly. A lumpectomy, nothing more. The care was impeccable, and I was impressed by what could be accomplished in half a day during outpatient surgery. As the various scans and results came in, my husband, a physician, and I would review my medical chart. He would show me the images, and it would help me prepare questions I might ask my oncologist. My privilege was not lost on me. The information and people I had access to would never be so easily accessible to most patients.

I was so confident going into my first meeting with my oncologist a month later, that it was understandable that the floor felt like it was giving way when she said, “I hear you think you might not need Chemo”. I started crying. “Why are you crying?” asked the breast navigator. I wanted to scream – how can you ask that question? I wanted to weep, to lie down on the floor and wail. Instead, I held back my tears and tried to answer the question asked of me: Why was I crying? Because I didn’t think I needed Chemo. Because I didn’t really take it seriously until now, because everything had gone so smoothly. I just shook my head. I thought the answer was obvious.

My oncologist was kind; she looked like my aunt. This is race concordant care, I told myself, even if she is Mediterranean and I’m Indian. It felt good to have an oncologist who looked like a beloved family member. She told me I looked like her sister.

She looked at me with great kindness. She showed me the results and helped me understand my Onctotype Dx, my staging, and my chances of recurrence. We talked for 90 minutes. As a maternal health researcher, I knew patients often lament the little time they get with their providers. I was stunned by the time she was allowed to spend with me and the breadth of information she shared. I did not leave that appointment until I had understood it all. She pointed me to the RxPONDER trial and informed me that I could be eligible for the OFSET trial.  My husband and I read whatever we could. I learned that as an Indian woman, I had a higher risk of being diagnosed at a younger age and with more aggressive disease than a non-Hispanic White woman. Why had I not known that?

We dug through the appendices and read everything we could until we understood all the data, findings, and recommendations. It was clear. We could not rule out Chemo with confidence. It was not a choice, and I had not understood how much was yet to come.  

The months that followed found a new rhythm. Chemo has a lot of scaffolding, I told my family. They can predict almost to the hour what side effects you will feel when, and my care followed this path. I chose Fridays as my Chemo days, and the worst of it would start the next Tuesday when the steroids were stopped. Tuesdays, I would spend in the garden, having discovered early on that being outside, working with my hands, and doing repetitive things made me less nauseous and kept the joint pain at bay.

The cycle split me into two people, the patient who gardened and the academic who wrote, split with the predictable waning of side effects. Until infusion day. For four months we continued, the patient gardener and the academic researcher, lock in step, hair loss our one connection. “Now you are halfway through treatment, now you will have different side effects.” One of my new medications, Taxol, was discovered by a family friend back in North Carolina. His daughter-in-law checked in with me regularly. Everyone in the Indian community back home asked if I was taking Dr. Wani’s medicine. This too felt like race concordant care.

The most comforting thing a nurse told me was “one day this will all be a memory.” I waited for that day everyday. And finally, it ended. I asked for a long break before starting radiation. I wanted to be some place where people took the summer off and rode bikes. The reset boosted me. I was ready for radiation. Then one day, it all ended. It was over. I had rung the bells, I had gone to every appointment, I had even written a proposal and a paper. I spent the next six months getting back to work, playing catch up, writing my papers, my proposals, and skiing some during the winter. Somehow, I also renovated a major part of my house during this time. In the middle of renovation chaos, I found a lot of hope for spring when I would have a new kitchen, daffodils, and be on my way to full recovery. My oncologist left. I was assigned a new one. The appointments continued, but nothing felt hard. My body was worn out. I needed a break. That was clear, but nothing felt hard.

Until I learned that I had three more years of oral chemo. How could this be? This is the last thing I want – I knew another pill was coming, but this was no ordinary pill. This was Kisqali, there was more research to be read. The prescription was sent, I had more tests and scans to establish a baseline, and if I hadn’t worked just two floors up from the cancer center, I don’t think I would have done anything for those two weeks than go to medical appointments.

The specialty pharmacy called. They were going to help me fill the prescription and get it to me, they were going to help me with the copay, which was $4000 per month. I almost dropped the phone. What? “Yes, the copay. It is $4000 for each month but don’t worry, we will help you pay it. There is a copay assistance program from the manufacturer. It pays upto $15,000. After that we are going to find other sources to help you pay, some foundations or the other. We are going to put you on the line with someone in the copay assistance program, don’t worry, it will all be taken care of, but you have to talk to this person now, and then you have to talk to us again.”

All of a sudden, what felt like the end was the beginning again. Except this time, I was looking at three years of treatment. I received some information on side effects. The information sheet was two pages long. I received a call from the hospital pharmacy for medication education. It was a long call, that ended with body aches and pains. It all felt unreal. I could barely catch my breath. What had been the point of the last year? How was I still at risk? I read the study again. A 3% increase in invasive-disease-free survival in 30 months, based on interim trial results. But neutropenia in over half the patients.

All day, the phone rang. Novartis also had a case management program I could enroll in. They would help me manage my medication. The specialty pharmacy called to see if I was ready for the second month’s prescription. The hospital called to remind me I had several follow-up appointments coming up. I got letters from copay assistance programs, from Novartis, and from the hospital because my bills were going up, and they needed to adjust my monthly payment. I easily spent the better part of two weeks managing this information. I stayed up late to finish my academic work and wore myself out even further. Depression and anxiety started to settle in.

What had been a good experience with cancer treatment seemed to be going off the rails completely. Where was the patient in the NATALEE trial? Where was the patient supposed to go in all of this?

I wanted to cry. I felt so sad and alone. I knew what my body had been through and the ways in which I had changed forever. I was slowly getting back to running, to getting my mental acuity back, while still dealing with the side effects of NSAIs. The thought of adding another side effect, much less three or four, was deeply anxiety-provoking. Was I ready to spend the next three years feeling awful?

If cancer treatment had given me one good thing, it was a deep connection with my body. I had listened to my body for over a year. It was easy to ask my body what it wanted to do. The answer was a clear no. I had survived cancer, but I was done surviving. That felt more important than anything, and the list of side effects was not going to help me do that. The answer was no. But the worry continued. Was I being too brash, over confident? Was my body telling me the right thing? I called my oncologist friend. You are my second opinion, I told him. He read the study and called me later. We talked it out while I sat in my car watching the sunset. He validated my feelings and agreed that the results seemed minimal in comparison to the cost of side effects.

So, it was an even greater relief three days later when he shared a commentary published that very day by cancer researchers in Canada. The commentary confirmed my body’s message. The cost to the patient mattered. Side effects mattered. Copay costs mattered. If I were to heal, my body wanted to start now, not in three years when it was even more worn out. I know a risk is a risk. But the patient gardener and the academic researcher made a pact. We were going to be ok with choosing no. Science was still on our side.