“I wasn't interested in eating, so I wasn't”: A patient journey map of peri- operative nutrition concerns for cytoreductive surgery in ovarian cancer

Ovarian cancer is a disease that often hides until it has spread deep within the abdomen, making it one of the most difficult gynecological cancers to treat. When the disease reaches an advanced stage, doctors often recommend a massive operation called cytoreductive surgery. This procedure involves removing all visible tumors from the lining of the abdominal cavity, which can sometimes require taking out parts of the bowel or other organs. In many cases, this surgery is followed by a specialized treatment where heated chemotherapy is circulated inside the abdomen to kill any remaining microscopic cells. Because this treatment is so physically demanding, the body's ability to eat and absorb nutrients becomes a critical factor in recovery. Yet, for many women facing this journey, the path to proper nutrition is clouded by confusion, conflicting advice, and a lack of clear guidance from the medical teams caring for them.

A team of researchers set out to map this difficult path by listening directly to the women who had survived it and the health professionals who treated them. They conducted detailed interviews with ten women who had undergone the surgery, one family member who supported a patient, and seven medical experts, including surgeons, nurses, and dietitians. The goal was not just to count how many people struggled, but to understand the emotional and practical landscape of their recovery. The researchers asked these participants to describe their feelings at every stage of their treatment, from the moment of diagnosis through the long months of recovery after leaving the hospital. To capture the emotional weight of these moments, the women selected from a set of emoji faces to represent their state of mind, creating a visual map of their journey that highlighted where the experience felt overwhelming, sad, or hopeful.

The story that emerged from these conversations was one of being lost in a storm of information and uncertainty. The women described feeling completely overwhelmed and confused throughout their treatment. While the medical team focused on the technical success of the surgery, the patients were often left wondering what they should eat, how to manage their changing bodies, and whether their lack of appetite was normal. One woman, for instance, explained that she simply had no interest in eating, so she did not, highlighting a deep disconnect between the clinical need for nutrition and the patient's physical reality. The researchers found that the symptoms women faced were highly individual; some felt relatively well, while others battled severe fatigue, nausea, and a feeling of fullness after just a few bites, making it nearly impossible to keep food down.

A major source of distress was the lack of clear, consistent information. Many women reported receiving conflicting advice from different sources, including internet searches, friends, family, and even different members of their own medical team. Some were told to eat whatever they wanted to keep their calories up, while others felt this advice went against their lifelong beliefs about healthy eating. The medical professionals acknowledged that they often struggled to provide enough information due to time pressures and the fact that many patients lived far away from the hospital. They admitted that the stress of the diagnosis and the effects of pain medication often made it difficult for patients to remember what they were told, leading to a cycle where important nutrition advice was given but never truly understood or retained.

The study also revealed a significant gap in understanding the role of the dietitian. Many women did not realize that a nutrition specialist was part of their care team or what kind of help that person could offer. Some felt that seeing a dietitian would not have been useful because they were too sick to eat, not realizing that these specialists could help manage the very symptoms that made eating difficult. The researchers found that while the hospital provided nutrition support during the immediate recovery period, there was a massive gap in care once the women returned home. They were left without resources specific to ovarian cancer, often having to rely on generic information meant for other types of cancer or other surgeries. This lack of tailored support left many women puzzling over what to eat weeks or months after their treatment ended.

The emotional journey mapped by the researchers showed a wide range of feelings, with confusion and sadness dominating the early stages of treatment. However, moments of happiness and relief did appear after the surgery was completed and the women began to recover. The visual map created by the participants showed that while the medical team and the patients often saw the same journey, they experienced it differently. The medical team focused on the clinical milestones, while the patients were navigating a complex emotional and physical landscape where the simple act of eating became a source of anxiety. The researchers concluded that to improve care, the entire medical team needs to better understand the role of nutrition and communicate more effectively with patients. They suggested that future efforts should focus on creating resources that are specifically designed for women with ovarian cancer, developed with the direct input of the women themselves, to ensure that the advice given is clear, consistent, and truly helpful.