Take-home Message

How to promote patient engagement

(Fictional narrative by the doctor)

James Fleck, MD, PhD: Anticancerweb 11 (01), 2020

Milton was a very communicative guy, expressing multiple skills. He was always available to meet social challenges, helping the needy people. He was an enthusiastic person, believing in new ideas and revealing his persistence in accomplish them. He was cheerful, dynamic and enterprising. When we started talking about cloud computing, he was so excited that almost forgot his illness.

He immediately began designing a project exploring the development of a personal medical record (PHR) made available on the Internet. I was forced to temporarily interrupt this matter, taking him out of the cloud, as he was already doodling his new idea. Although I was also motivated by the subject, my main role at that particular moment was to take care of the patient.

Momentarily, we would both go back to the real world.

It seemed to me that Milton was giving more importance to the loss of his medical record than to his illness. I immediately made him aware that a relatively serious illness was happening and that he would have to focus on his clinical assessment and treatment. Despite being very intelligent, he was a little dispersive and I had to deal with this inappropriate behavior. Although married for twenty years, he did not share the diagnosis with his wife and children. I advised him to talk to his wife about the disease, keeping myself available to answer questions.

Milton explained that he would have postponed the information to Doris because the family was setting up the new home and also was unsure what to say due to the recent loss of exams and materials. But, he agreed to do so, as soon as possible.

On the day of upper GI endoscopy, I met Milton at the hospital. As I mentioned earlier, I would follow him throughout the exam. Milton was fine and came with his wife, Doris. He had already informed her of his current disease.

Sedation was performed with Propofol, a short-acting intravenous anesthetic. Its effect is maintained only for the time necessary to perform the examination, which favors outpatient use.

The upper GI endoscopy showed an ulcerated lesion located in the gastric antrum, that is, in the distal part of the stomach, close to the small curvature. The biopsy was performed and the material carefully labeled and sent to pathology laboratory. In addition, an evaluation of the presence of Helicobacter pylori, a bacterium potentially associated with the risk of developing gastric tumors, was requested. The gastroenterologist also performed an endoscopic ultrasonography, which would give us additional information about the extension of the primary tumor in the gastric wall, as well as the size of regional lymphatic nodes.

Milton woke up about five minutes after the exam was over.

He was feeling well, showing a kind of intense arousal, because this anesthetic usually gives a feeling of well-being. I waited until I realized he was conscious and informed him the result of the endoscopy exam.

I told him that I would personally follow the biopsy material and its evaluation in the pathology lab. I later reinforced this attitude to Doris, since I knew she was also concerned about the previous loss of gastric biopsy material.

After proper biopsy processing, I went to the lab and joined the pathologist to examine Milton's slide. It was a typical intestinal adenocarcinoma of Lauren's classification, showing well-differentiated tumor cells tending to form glands. This finding is consistent with the distal tumor location observed at GI endoscopy. It was also possible to identify a certain degree of glandular atrophy, which is not uncommon in this specific type of tumor.

Generally, glandular atrophy leads to decreased acid secretion, making the organ more susceptible to Helicobacter pylori, which was actually found in the evaluation of material collected during previous endoscopy. The presence of Helicobacter pylori produces nitrous compounds, which further cause mucosal atrophy, generating a vicious cycle that favors the development of the tumor.

A few days later, Milton returns to the office. Doris and their three kids also showed up. There were three boys, aged from 12 to 17 years. Milton asked me to talk to everyone, since he would have anticipated the problem for the kids.

I accepted this challenge.

I understood that he was trying to be as clear as possible in expressing his problem. This was in keeping with his outgoing behavior and the direct and objective manner in which he conducted his family dynamics.

I reflected a little on how to approach the issue before such a diverse group.

My secretary gathered everyone in a meeting room. When I entered the room, the family was talking in a relaxed manner. They freely expressed their thoughts about the new housing and how the boys were feeling welcome at school. I understood that the family was coping well with the crisis. I realized that Milton had given an initial impression of the problem and fitted it into the family's daily routine.

I include myself in this same scenario. When I sat down, everyone broke off the conversation and looked me in the eyes, expecting what would be said. I tried to be clear and objective, maintaining a calm and affective tone in conducting the dialogue, using a language that could be understood by all, regardless of differences in age and family role.

I explained that Milton had a tumor and that it was located in the stomach. I said he would have to do some additional tests to see if the disease was restricted to the organ. I anticipated that if the exams were normal, Milton would have to undergo surgery. The resected material would be examined in the laboratory and would define the need for additional treatment. I explained that there was also a bacteria in the stomach, which would be treated immediately with antibiotics.

I made myself available for questions.

Milton took the initiative and mentioned that although it was difficult for everyone, he was feeling safe. The news were entirely understood by the family. He had also communicated the situation at work and had received full and unconditional support, with flexible schedules and tasks. He concluded by saying that he trusted the doctors.

At that moment, I realized that it was a very well-structured family. They were doing well in dealing with the crisis while maintaining family stability. I concluded that this was the reason for Milton's positive behavior toward the disease.

Doris asked: What is going to happen, now?

Well, endoscopic ultrasonography showed a primary tumor invading the muscular layer of the gastric wall, being clinically classified as stage T2. There was no enlarged lymph node (N0) and I would recommend additional imaging (abdominopelvic computed tomography and chest computed tomography) to assess the presence of metastatic disease. Although normal imaging could not rule out the presence of microscopic metastatic disease, its presence would be less likely in a T2N0 typical Lauren's intestinal adenocarcinoma of the stomach.

There were no more questions, and I talked to the boys a little more about soccer league while my secretary helped the patient schedule his exams.

After a few days, Milton returned to my office with the imaging results. 

All imaging exams were normal and Milton questioned me about his chances of being cured.

This was a very difficult question, as the tests do not have 100% sensitivity and specificity in detecting metastatic disease in both regional lymph nodes and distant organs. In addition, the use of more accurate tests, such as preoperative laparoscopy and PET-CT, would have contradictory use in a seemingly less aggressive tumor.

I could predict a good prognosis, but I asked Milton to postpone my definitive answer. I would recommend primary surgery removing the entire gastric tumor with a safe resection margin of at least 5 cm and an extensive lymph node dissection called D2. Milton's cure probability would be better estimated after the pathological examination.

Milton agreed and I sent him to an oncology surgeon.

Some days after, my colleague called me describing his surgical approach. He would perform a distal gastrectomy and D2 lymph node dissection. He sustained the surgical plan on the findings of the endoscopic ultrasonography + image exams. The partial gastrectomy would be associated with lower postoperative risk and a better quality of life.

All of Milton's preoperative blood tests were normal and I would follow him throughout the surgical procedure. Milton was feeling very safe and transferred to the surgical team the same relationship he had established with me.

Milton had no comorbidities and the surgery occurred without complications. It was a lengthy procedure, lasting almost four hours. The surgeon explored the lymph nodes of the celiac, left gastric, common hepatic and splenic arteries. The spleen could be spared and there was no damage to the pancreatic tissue. All the materials were sent to the pathology laboratory.

Milton had an excellent postoperative recovery and was discharged from hospital in seven days. The pathology confirmed a Lauren’s intestinal type adenocarcinoma, located at the gastric antrum, showing adherent tumor cells, which were arranged in glandular formation and expressed intestinal metaplasia. The tumor was removed with a large margin of 7 cm and the pathologic stage confirmed a pT2, which means that the primary tumor was restricted to the muscular layer of the stomach. Despite the extension of the lymph node dissection, the pathologist could only identify 15 lymph nodes, which did not configurate a D2 lymphadenectomy. Unfortunately, two left gastric lymph nodes were positive to tumor cells (pN1). The disease was upstaged after surgery. According the 8^th AJCC classification it was still an early stage (IIA), however with an expected overall survival around 50% after five years of follow up.

It was a Monday afternoon when Milton came into my office for his first postoperative clinical oncology evaluation. He brought me a folder containing all the medical reports and had a disk containing all the imaging exams. He was proud to have organized his medical data in judicious chronological order.

Interestingly, the first thing Milton mentioned was the willingness to include all of his clinical data in a well-designed personal health record. He spent most of the postoperative time working on some software drafts.

Once again, I had to bring him back to the real world. I said we should talk about the pathology exam and the need to complete the treatment.

Milton agreed…

My recommendation was an adjuvant treatment with combined chemoradiotherapy. Several prospective randomized trials and metanalysis, which included stage II gastric cancer, have shown a significant survival benefit favoring adjuvant treatment over surgery alone. Since, Milton had D1 lymphadenectomy, showing 2/15 positive lymph nodes, I would recommend the addition of abdominal radiation therapy to adjuvant chemotherapy. He would be treated according to the Intergroup Trial INT 0116 intervention arm, considered the standard treatment at the time of his diagnosis. Treatment would require about six months of clinical oncology care and was often associated with adverse events, especially during the second month (combined phase of radiotherapy and chemotherapy).

I asked Milton to lend me the examination file he had organized, and using the pathologic report, I carefully explained the rationale for recommending adjuvant treatment.

Milton listened attentively, and as I explained each phase of the treatment, he drew up a schedule looking to match the treatment with his daily activities. 

I was already used to Milton's proactive behavior.

At that moment, I had to stop him and advise that treatment should take priority. Sometimes the expected toxicity of treatment would require the suspension or delay of some personal plans. I would take care of him throughout the treatment, guiding him on the limitations imposed on his social and professional activities.

I added by saying that his treatment would be outpatient, but he would have to follow all recommendations and avoid professional or family challenges.

He agreed and we set the date to start adjuvant treatment ...

To be continued in PLOT 3 (conflict) …

* Attention: The story 5 will be published sequentially from PLOT 1 to PLOT 6 and you will always see the most recent posting. To read Story 5 from the beginning, just click in the numbered links located at the bottom of the homepage. 

© Copyright Anticancerweb 2020

James Fleck, MD, PhD: Full Professor of Clinical Oncology at the Federal University of Rio Grande do Sul, RS, Brazil 2019