A patient-centered look at cancer care design

When I was diagnosed with cancer, I started documenting my journey — not only to process what I was going through but to better understand where care design succeeds and where it breaks down. As a designer, I couldn’t help noticing how each step revealed gaps in patient-centered care. This is my story, and along the way, I’ve highlighted moments that show where the system could better meet patients where they are.

Diagnosis to Surgery

  • It’s been more than a year since I was diagnosed with rectal cancer. I was 34, and the news was a shock. For months I had sensed something was off—my bowel movements had changed, I needed to go more often, and it didn’t look normal. My primary-care doctor had actually advised a colonoscopy six months earlier, but I put it off. I was too afraid of the procedure.

    By July 2024 nothing had improved, so I accepted to do the colonoscopy. The day before was awful. I had a bad reaction to the prep drink, nausea all day, almost throwing up every glass. It felt like torture, but I finished it and we drove to the hospital the next morning.

    They didn’t allow my husband to come with me to the pre-op area. Hospitals have always made me uneasy—the needles, the smell, the memories—and I shook so badly that I needed extra blankets. The nurses tried to reassure me, saying the prep was the hardest part. They were right that the sedation worked: I wasn’t asleep but drifted in a strange haze, aware of voices I couldn’t quite understand. There was no pain, almost calm.

    When it was over they wheeled me back to a recovery area full of other patients. Ten or fifteen minutes later the doctor came and simply said they had found cancer cells in my rectum. I don’t remember a word after that. My tears wouldn’t stop. I desperately needed someone beside me, but my husband was a thirty-minute drive away. They contacted him late. A kind nurse stayed near, typing at a computer just so I wouldn’t be alone, while I cried and tried to tell myself they must be mistaken. No one in my family had cancer. I was healthy, active—walking fast, biking, swimming, hiking. How could this be?

  • The next month was a blur. We were shocked, angry at the universe, unsure how to tell our families. I blamed myself for all the stress I had during the past years, for the loneliness of immigration. I was searching for a reason.

    Soon we were ushered in to meet an entire team—surgeon, oncologist, radiologist—even before I’d had a CT or MRI. The pace felt urgent, as if life-altering choices had to be made on the spot. But we needed time to research, to process. The diagnosis itself was already overwhelming; the wave of appointments and tsunami of medical jargon only intensified that pressure.

    The first visit was with the radiologist who explained the entire radiation process even though we didn’t yet know if I’d need it. He asked if we have children and described how radiation could damage fertility and I would need egg freezing.I started to cry, wanting the process to shrink, not grow.

    The next step was to meet my oncologist, but before I even saw her, a research fellow approached me about joining a study. I was there to hear my treatment options—terrified and raw—yet someone was already asking for my data. I felt like a data point first, a patient second, as if my fear and emotions didn’t matter.

    My only focus was getting through the cancer itself, not contributing to research, so the timing felt completely wrong for me. With another hospital, I had a very different experience. When I finished my treatment, they asked whether I would like to participate in their studies—a request that felt far more patient-centered and human-focused.

    When I met the oncologist for the first time—before I had even done my CT scans—she mentioned that I would “probably need a port.” I didn’t know what a port was, so I asked. She searched on Google and showed me the device, explaining that it’s usually implanted under the skin on the chest.

    For someone like me—who faints when confronted with too many medical details—seeing the port only spiked my anxiety. I started to cry, overwhelmed by fear: how it would look on my body, the pain I might endure, and the thought of another step before even starting treatment.

    At that moment, I felt this wasn’t necessary. I still didn’t know the stage of my cancer or what treatment I would need. It felt as if the hospital was following the same protocol for every patient, without considering individual needs or personalities. Overwhelmed by everything, I leaned on my husband—he became the researcher, taking on the burden of information—while I tried to learn only what I absolutely had to in order to keep from collapsing.

    What I experienced isn’t unique—research mirrors this reality. Huijgens and colleagues found that many patients facing treatment decisions feel a heavy burden—driven by uncertainty, fear of making the wrong choice, limited guidance from clinicians, and an overwhelming sense of personal responsibility (Huijgens et al., 2024).

    A study titled “Consent Timing and Experience: Modifiable Factors That May Influence Interest in Clinical Research” highlights how timing and the skill of the person seeking consent shape a patient’s willingness to participate. Patients approached by more experienced staff were significantly more likely to agree, and willingness peaked when consent was obtained 1–30 days after diagnosis, then dropped after 90 days (Gerber et al., 2012). In my case, the person who asked was a very young assistant, and I had no interest at all.

    Design takeaway:

    • Patients need the right information at the right time — not everything all at once.

    • Timing and emotional readiness should be part of the consent design process.

    <img src="https://images.squarespace-cdn.com/content/6849df8a3dabe50908c16035/6491a228-6cc7-4c28-b30f-179f65d0528d/journey+map.png?">

    The CT and MRI took nearly a full day. For the CT with contrast I needed an IV and had to drink an unpleasant liquid. Each time someone tried to draw blood or insert an IV my blood pressure dropped; nurses would put ice on my neck and lay me down until I recovered. It was frightening—and I didn’t yet realize how often I’d repeat it. Results finally showed Stage 2—curable. The tumor board decided surgery should come first. I was relieved: maybe surgery alone would end it.

  • Before surgery I met with the fertility department because even the surgery alone could affect fertility. We planned to freeze eggs, but our insurance initially denied coverage, insisting the surgery alone posed no risk—despite my surgeon warning that it could. I couldn’t understand why the insurer believed it knew more than the surgeon. The appeals process became a drain of calls, paperwork, and anxiety, adding stress when I had none to spare. Approval finally came on the very day of surgery—far too late to help.

    I later learned I was far from alone. The Carrot Fertility podcast episode “When Insurance Doesn’t Cover Egg Freezing for Cancer, with The Chick Mission” shares the stories of Amanda and Tracy, both in their early thirties and newly diagnosed with cancer. Amanda discovered that even with fertility benefits, her insurer refused coverage because she wasn’t technically “infertile,” though her treatment would almost certainly cause infertility. Tracy’s insurance labeled fertility preservation “elective,” despite a planned hysterectomy that guaranteed she could not have children. Their experiences mirror the frustration I felt and ultimately led to the creation of The Chick Mission, a nonprofit that provides grants and advocates for mandated coverage so others aren’t forced to fight this battle while facing cancer treatment (Carrot Fertility, 2023).

    This isn’t an isolated problem. A national survey by the Commonwealth Fund found that 17 percent of Americans had an insurance company deny coverage for care recommended by their physician, and more than half of those patients—and their doctors—did not challenge the denial (NBC News, 2024). Knowing that so many people face similar barriers made my own struggle feel less personal—and more like a systemic failure.

    Design takeaway:

    • Insurance and medical systems should be coordinated so patients don’t have to act as their own case managers in moments of crisis.

    <img src="https://images.squarespace-cdn.com/content/6849df8a3dabe50908c16035/67d6d098-5286-49f2-a0b3-ff54add93dc0/%23of+appointments.png?">

  • One week before surgery I met with the ostomy nurses. They explained the Low Anterior Resection (LAR) procedure and that the surgeon might create a temporary stoma to let the new connection heal. To choose the best spot, they asked me to bend, sit, and tie my shoes so the stoma wouldn’t interfere with daily life. The thought of it looked frightening. They also warned that the final decision would be made during the operation, and for a moment I clung to the hope that I might not need the stoma—but that hope proved false. 

    The day before surgery brought another harsh prep: drinking eight glasses of laxative solution and taking antibacterial showers three times over three days to lower infection risk. I was anxious about everything—wondering if I was doing it right, wondering if I was ready. Despite the fear, I still believed the surgery might be a quick, definitive step. I had no idea how different the reality would be…!

  • Looking back, I realized that patient-centered design isn’t just about comfort or empathy — it’s about sequencing information, timing choices, and aligning systems around the patient’s emotional and cognitive capacity. These moments showed me that care can be redesigned — not only to cure, but to care.

    Clinical system:

    • No companion allowed in the pre-op and recovery area, leaving me alone to receive the diagnosis.

    • Rushed, pre-staging meetings with multiple specialists that overloaded me with information and urgency.

    • Unnecessary, graphic demonstration of the port despite my clear anxiety about medical details.

    Research system:

    • Research consent request before any treatment discussion, which felt insensitive and transactional.

    Insurance system:

    • Insurance delays and opaque processes that added major stress to fertility planning.

Surgery to Recovery

  • My surgery was scheduled for 7 a.m. on a Monday. We had to arrive two hours early, so we woke up at 4 a.m. and drove the quiet, empty streets to the hospital. Usually, the hospital entrance was clogged with cars waiting for valet service, but at that hour it was still. I felt caught between two impulses—wanting to delay what was coming, yet desperate to get it over with.

    In the pre-op area, patients were separated by thin curtains, with only a few private rooms available. I was told I was “lucky” to get a room, which only made me sad about those who didn’t.

    One by one, my care team came: the nurse, IV nurse, anesthesiologist, and surgeon. Each asked my name, date of birth, and procedure—safety checks that felt more like procedural tests. I had only a vague idea of what was ahead.

    The nurse took my vitals, started an IV, and my anesthesiologist tried to keep the mood light. He joked that he’d “make me sleep through the worst part.” My surgeon reassured me that everything looked good, even though I had vomited during the bowel prep. Mo held my hand until the moment they wheeled me away. That was the last thing I remember before the lights blurred.

    When I woke up, pain and thirst consumed me. I tried to call for help, but no one seemed to hear me. Nurses moved quickly between patients; everything felt distant. Mo appeared and told me the surgery had gone well. I think I stayed in recovery for two or three hours before being moved to my room—on the 16th floor, in a section called The Pavilion.

    The first few days were a haze: pain, nausea, the urinary catheter, and the new reality of an ostomy bag I couldn’t bear to look at. Nurses emptied the bag for me while I lay in bed. When they tried to show me how to change it, I closed my eyes. They encouraged me to walk to speed recovery, but even sitting felt impossible.

    At first, I was allowed only to drink liquids. Then, after a while, I was given permission to try soft foods. I battled constant nausea, which I only managed to deal with by taking regular doses of Zofran. Two nights after the surgery, after worsening pain, a portable x-ray was brought in as it was hard for me to move out of bed. The process was rough, mechanical, and uncomfortable—metal plates pressed under my back while I lay still. The next day, they did more CT scans and the doctors mentioned a “small internal leak” was causing the pain. They reassured me that it was nothing to worry about. Later, I learned it wasn’t that simple.

    One afternoon, an older woman entered my room. She said she’d lived with an ileostomy for 30 years and wanted to reassure me that life could still be full. She could swim, bike, and live normally. But the moment she said hers was permanent, my heart dropped. Why would the hospital send someone whose situation felt so different from mine? And just days after my surgery? The woman asked if I had questions, but I couldn’t even think. I was still in shock at the prospect that I might have to live with an ileostomy forever. Instead of comfort, her visit deepened my fears about the future.

    Things didn’t get much better the following day. On Saturday morning, a debate ensued among the hospital staff about whether I should be discharged. Several doctors stood around my bed debating whether I was ready to go home. My primary surgeon wasn’t there. My nurse insisted I wasn’t ready; the others said I was. They argued about me as if I weren’t in the room. I felt invisible and it was this experience that broke my trust with my caregivers. I wanted to be seen, heard, and treated as an equal partner in my own care.

    I was tired of hospital beds with plastic covers, endless IVs, blood draws, and EKGs. I missed my dog, Jada. When the doctors asked if I felt ready to go home, I said “yes” – even though I wasn’t sure and was terrified to leave the safety of the nurses.

    Finally, on Sunday, after a week in the hospital, I was discharged. I was stressed about what home would feel like — whether I’d manage, whether everything would be okay — yet at the same time, I was so eager to be outside again, to feel the early fall breeze. A nurse wheeled me downstairs, and as we waited for the valet to bring our car, I took a deep breath. When I sat down inside the car, I started crying — partly from relief that I was finally going home, and partly from the fear of what awaited me there.

    Design takeaways:

    • Peer support is valuable, but timing and matching matter. Patients need empathy for where they are emotionally, not where others think they should be. Misaligned empathy or attempts at support that aren’t properly timed or contextually matched can actually backfire, making patients feel even more alienated and stressed.

    • Medical rounds should be designed as inclusive conversations, not presentations made around the patient.