A patient-centered look at cancer care design

My cancer journey- Part 1 (Diagnosis)

Diagnosis:

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?

First appointments:

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.

The pace felt urgent, as if life-altering choices had to be made on the spot. But we needed time to research, to process.

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.

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).

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.

I was there to hear my treatment options—terrified and raw—yet someone was already asking for my data.

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.

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.

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.

Fig. 1_ My cancer journey from Diagnosis to Surgery and my stress level during the journey

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.

IVF and insurance?

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).

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.

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.

Fig. 2_ Number of my appointments from diagnosis to surgery

Surgery prep:

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…!

Design Gaps Highlighted:

  • 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.

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

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

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

Reference