Since a diagnosis of colon and rectal cancer in 1993, I have had a number of serious complications and a recurrence. Some, if not most of what occurred could have been avoided. My experience points to some gaps in my health care that providers and patients might want to consider.

I was given the option to choose a cancer treatment and made the wrong choice. As a busy university administrator, I waited too long to follow up after a polyp was removed during a colonoscopy. If I were advised to return, it didn’t register. During a subsequent physical exam, a malignant tumor was found. A colorectal surgeon advised me to pursue “the gold standard” treatment of surgery to remove the tumor, possibly followed by radiation or chemotherapy. A second colorectal surgeon, recently hired from Roswell Park Comprehensive Cancer Center, proposed pre-surgical radiation to “shrink the tumor and minimize the risk of adverse side effects.” I spent time in the medical society library reading reports on treatments. There was a lot of detail, but no information that would help with the decision. I returned to the first surgeon, who told me “Radiated tissue doesn’t heal.” With nothing more than doubt that a doctor or a hospital would perform surgery that wouldn’t heal, and a desire to avoid side effects, a 50-year-old in otherwise good health chose pre-surgical radiation.

Radiation and surgery were followed by infection and fistula.

Within a month after surgery, I was referred to a colorectal surgeon in another hospital who prescribed antibiotics daily for months and performed several debridement procedures. The discomfort of changing wet-to-dry dressings at home was hard on me and my wife as caregiver. Months passed with no resolution of the fistula. Weak and declining quickly, I was admitted to hospital, where a team of residents ordered an X-ray of my abdomen, which revealed a surgical needle. The needle was removed and my condition improved. A surgical nurse confirmed reporting the left needle to the surgeon, who altered the operative report and failed to inform me. The doctor who was treating me said he was unaware of it. I would have accepted the decision to close without retrieving the needle, but a cover up was not acceptable. A jury agreed. There was no celebration of the jury’s decision, only gratitude that I had survived.

The doctor I was referred to had not seen the need for an X-ray.

After repeating the same treatment for the infection for months and watching my condition deteriorate, why not do what a team of residents did and seek more information? He also failed to notice that the tumor had returned. Seven years after the initial diagnosis, I had a recurrence. My doctors had failed me. An assistant professor of colorectal surgery in a teaching hospital analyzed my case, discussed it with me and my wife, and told us he thought he could cure me. Finally, the discussion was focused on me and my treatment. I had a doctor I could trust. His surgery plan involved a urologist colleague and clean margins free of cancer cells, which meant removing the rectum and prostate, additional bowel resection, and a permanent colostomy.

Miscommunication between sending and receiving hospitals resulted in a chemotherapy overdose that required hospitalization for treatment of neutropenia.

Urine ran through previously radiated sutured tissue like a sieve until a bilateral nephrostomy procedure inserted tubes through my back to drain my kidneys. A month after surgery, I was released to the care of visiting nurses at home. In a few weeks, I started chemotherapy. After an initial treatment for a week, I was transferred to the oncology unit at a facility closer to my home. In addition to being extremely sick, I was vulnerable to infection and quarantined, receiving injections every hour. Blessed with a second chance, I didn’t feel the slightest reservation about questioning dosages and procedures.

Now, 25 years after the surgery for the recurrence, I am recovering from three years of red, broken, weeping skin under the ostomy pouch.

My dermatitis was thought to be the result of years of constant contact with the adhesive on the ostomy pouch. A dermatologist recommended a topical treatment, but it interfered with adherence of the pouch. An allergist sought information on the material in the adhesives but was told by the manufacturer that such information is proprietary. A stoma nurse recommended “crusting” the skin with powder and using an alternative pouching system, but neither met with success. An internist certified to treat infectious diseases prescribed Cholestyramine, dissolved in water and taken twice a day. I can engage in more physical activity and no longer modify pouches with non-allergenic tape, which caused both physical discomfort and anxiety.

Much progress has occurred in technology in the 32 years since I was diagnosed with cancer, but recent experience suggests that the culture and fragmentation of the practice of medicine remains, suggesting the need for greater emphasis on communication and coordination. AI and joined-up systems of communication, such as interactive portals, patient reminder systems and other innovations suggested on this site should help, but there is no substitute for accurate, unbiased and honest information received in a timely way throughout the treatment process. AI effectiveness depends upon jargon-free summarized information with judgements based upon actual experience. Effective communication depends upon providers recognizing patients as individuals and encouraging dialogue with them.

Patients can help with communication and coordination.

Patients can take responsibility for their care, including being advocates as members of the treatment team, asking questions and diplomatically confirming treatment protocols and details. I asked my primary doctor to serve as a clearinghouse and interpreter of information, and he helped pointed out gaps that avoided miscommunications. And finally, never give up, no matter the frustration, try to be positive. It helps.

Arno Loessner is a patient advocate.