In 1993, I received a diagnosis of colon and rectal cancer. My experience since then has been filled with challenges and a recurrence, many of which could have been potentially avoided. This situation underscores critical deficiencies in healthcare that both providers and patients need to acknowledge.

At first, I was presented with a range of cancer treatment options and made a poorly informed choice. As a university administrator with a busy schedule, I overlooked the necessity of timely follow-up after a polyp was removed during a colonoscopy. When a malignant tumor was eventually identified, a surgeon recommended “gold standard” surgery, which might be followed by radiation or chemotherapy. Alternatively, another surgeon at Roswell Park Comprehensive Cancer Center proposed pre-surgical radiation to reduce the tumor size and lessen side effects. After investigating the various treatments and receiving contradictory recommendations, I opted for pre-surgical radiation based on one surgeon’s caution regarding the healing challenges associated with radiated tissue.

After undergoing radiation and surgery, I encountered an infection and a fistula. I went through several months of antibiotics and debridement procedures without resolution. A hospital visit uncovered a surgical needle that had been left inside me, which was later removed, leading to an improvement in my condition. This needle had been documented but hidden by the surgeon, which caused me considerable distress. In the subsequent trial, a jury ruled in my favor, but my true sense of satisfaction stemmed from my survival rather than a legal victory.

Adding to my difficulties, another doctor treating my recurring infection did not order an X-ray as the residents did, resulting in months of ineffective treatment. My tumor had reemerged, unnoticed. Fortunately, an assistant professor of colorectal surgery accurately evaluated my situation and proposed a surgical plan for a cure that involved several specialists, including a urologist, which resulted in a permanent colostomy.

Throughout this ordeal, miscommunication among hospitals led to an overdose of chemotherapy, requiring my hospitalization for neutropenia. These administrative errors highlighted the critical need for transparency and enhanced coordination in medical care.

Now, 25 years after my recurrence surgery, I am dealing with chronic dermatitis caused by ostomy pouch adhesives, resulting in physical discomfort and anxiety. Even though I have explored numerous treatments with different specialists, I finally found relief through Cholestyramine suggested by an internist.

While advancements in medical technology are clear, the culture and fragmentation within medical practice remain. Efficient communication and coordination are essential, demanding unbiased, clear information and patient-oriented discussions. Innovations such as AI and digital solutions can support this, but they must be integrated into a comprehensive, patient-centered framework.

Patients hold a vital role in facilitating communication and coordination throughout their healthcare experiences. Taking initiative, posing questions, and verifying treatment details are critical. Involving primary care physicians as interpreters and coordinators of medical information can help mitigate miscommunications. Despite the challenges, keeping a positive outlook and determination is crucial.

Arno Loessner, a patient advocate.