A total of 11 EC patients underwent qualitative interviews at different stages of their cancer treatment. The patient sample consisted of nine males (82%) and two females (18%). The patients’ age ranged from 33 to 82 years, with a mean age of 60.2 years (SD = 16.2). Six patients were interviewed preoperatively (55%) an average of 34.2 days before surgery (SD = 23.7), and five patients (45%) were interviewed postoperatively an average of 91.2 days after surgery (SD = 126.8). The diagnosis of eight patients was EAC (72.7%), and three patients had received the diagnosis ESCC (27.3%). Regarding neoadjuvant therapy, seven patients (63.6%) received nCT, and four patients (36.4%) nCRT. Details of the patients can be found in Tables 1 and 2.

Table 1 Patients’ demographic dataTable 2 Patients’ medical data

EAC esophageal adenocarcinoma, ESCC esophageal squamous cell carcinoma.

FLOT fluorouracil, leucovorin, oxaliplatin, and docetaxel; HMIE hybrid minimally invasive esophagectomy; nCRT neoadjuvant chemoradiotherapy; nCT neoadjuvant chemotherapy; pCR pathologic complete response.

The analysis of patient interviews led to the formation of 306 initial codes with seven consistent themes of negative and positive aspects of surgery on principle, negative and positive aspects of surgery as needed, information needs, decision-making, and participation in an RCT. An overview of the main themes and categories is shown in Table 3.

Table 3 Main themes and categoriesNegative aspects of surgery on principle

One of the most mentioned reasons against the surgery on principle by the patients was the fear of surgery. Specifically, patients expressed fear regarding unpredicted or rare complications of the operation, not waking up from anesthesia, and the physiological strains associated with surgery. Some patients’ concerns were also linked to the intensive care unit environment and the potential situations they might encounter or witness there.

Well, first of all, the typical fears about surgery of not waking up or facing complications, for which you have signed that you acknowledge them but hope will not occur. Those were the biggest fears and worries about it. (Patient #8)

Another frequently mentioned topic with regarding negative aspects of surgery on principle was postoperative impairments in QoL. This included pain and decreased physical capability following the operation. However, the majority of concerns were releated to diet. Many patients associated these concerns with physical changes resulting from the surgery, particularly regarding food intake. These mentioned symptoms included heartburn, nausea, fear of receiving food through a tube, and fatigue following meals.

After each meal, I could take a nap, simply because I am so exhausted, even now. After each meal, I could sleep because I am so tired. (Patient #9)

In addition to these physiological changes, many patients also feared the social consequences associated with dietary alterations. They expressed discomfort, feelings of shame, and fear of social rejection and isolation when eating in restaurants, stemming from the decreased size of the stomach.

If I go to a steak house, they will laugh at me when I ask for a children’s or senior’s portion, or something like that. Or leave out the side dishes; I only want the piece of meet. The rest doesn’t fit in. (Patient #9)

Positive aspects of surgery on principle

Despite the concerns and fears about surgery and its consequences, many EC patients also placed hope in this treatment approach. They desired immediate and complete removal of the tumor and anticipated a newfound and more courageous sense of life that accompanies it. For them, the operation is linked to reducing the burdensome feeling established by the diagnosis.

I'll put it this way, when you know that there's something in you that doesn't actually belong there, you always have a bit of an oppressive feeling in the back of your mind. It is, how should I say, you have normal - you have a normal quality of life, but you always know that there is still something in your body that actually - in principle, does not belong there; And a certain queasy feeling always remains. (Patient #2)

Regarding the physical pain experienced directly after esophagectomy and in the following days and weeks, a majority emphasized that it is not particularly relevant. They stressed that even if the pain is intense during that period, if it stops hurting in the long run, this aspect can be overlooked. This was especially true for patients who already endured significant pain during the course of their disease.

The pain I had before, that I had in my throat, was so terrible that it probably couldn't be worse. (Patient #5)

Negative aspects of surgery as needed

Many patients associated the surgery-only-as-needed approach with an increased risk of further cancer spread. They described the fear of progression as a feeling akin to a “ticking time bomb” inside their bodies, causing considerable insecurity.

The biggest concern would be that the cancer would still be in the body. That means, wherever it may stray, you discover weeks or months later that things have aggravated. In the worst case. (Patient #8)

Some patients expressed the view that since esophagectomy may still be necessarywith the surveillance approach, it might be better to undergo it immediately. Thus, patients do not have to delay surgery, sparing themselves surveillance appointments and the feeling of tumor tissue remaining in their bodies.

You could check it regularly and you're done, but that's the joke. If it gets worse, then you have to operate. That’s the problem. Then why don't you say right away, we'll get the rubbish out and done, and the issue is over, right? (Patient #5)

Positive aspects of surgery as needed

Nearly all patients emphasized that the surveillance approach includes the possibility of avoiding surgery and its potential negative consequences. These negative consequences include risks during and after the operation, as well as long-term implications and impairments.

So, I'll say it like this, if it [the tumor] would behave calmly, then I would prefer that [surveillance with surgery as needed], because every intervention is also a strain on the body. I would say, okay, let's see what happens. So that would be my method, I have to admit. (Patient #2)

One patient mentioned that unlike surgery on principle, surveillance with surgery only as needed allows one not to commit immediately to one treatment and decide later if esophagectomy is desired. Patient can take their time and wait until the clinical picture, or the own preferences change to be more certain about their decision.

Yes, I would recommend that to those [who are in this situation]. You should consider that. And if it gets worse, you can still operate, can’t you? (Patient #5)

Information needs

For some patients, addressing comprehension problems during the information process was crucial. These issues included discussions with medical experts, but it seemed to be a bigger problem for patients regarding written letters or documents such as medical reports. Nearly all attributed this to the large number of technical terms.

Well, I mean, this information with all these foreign words, that's a problem. When you get a doctor's letter like that, you don't understand it at all. I ask myself quite often, couldn't they also write it in a way that you understand? No? Words are thrown at you, you can hardly read, not to mention that you don't understand them at all, right? There should be more effort. (Patient #7)

In addition to content-related problems, some patients also attributed comprehension issues to the situation in which the information process takes place. They cited factors such as cognitive impairments due to the disease, medication, or chemotherapy, as well as being shocked by the diagnosis or anxious about possible answers that might follow uncomfortable questions. Moreover, patients reported that time pressure and sometimes also the time of the day made it difficult for them to follow discussions and ask important questions.

There are many questions that come to mind. I really have trouble remembering questions. Because I don't know, is it the medication or something else, or am I already suffering from Alzheimer's or something. To concentrate... and then pick up the thread of the conversation again. […] Everything has been said, but it's like the round this morning. So quickly. I just woke up. I didn't even see what they wanted or anything. Later, I told the nurse I have so many questions on my mind, I was totally exhausted this morning, and by then, they had all disappeared again. I have so many questions. I have a follow-up appointment next week and now I've made a list. […] A little more time for the patients… that's it. But other patients said to me, surgeons don't have time. (Patient #9)

Decision-making

A large proportion of patients reported discussing the diagnosis and possible treatment options with their family and friends. Typically, this involved their closest family and friends, but if the person had medical knowledge, also less afilliated persons were consulted.

With friends, with family. So in my case, I have friends who are doctors that I could discuss this with. (Patient #1)

For a few patients, it was also important to discuss the diagnosis and availabte therapies with their general practitioner, a second independent doctor, or other patients.

I've talked to other patients. They were in the same situation. And they have always been positive with the surgery. They also chose the surgery. Mostly. (Patient #10)

Most patients emphasized the importance of trust in the medical care in decision-making for or against surgery. This involved general trust in the clinical center in where the surgery was done, but also personal trust in the technical qualifications of the operating surgeon.

Well, I wasn't scared in any way, that I would die on the operating table or something like that, I have incredible trust in the doctors here. I think that there are really good people here. [...] And that's why I never worried so much about it, regarding the whole operation, the anesthesia, the catheter, all that stuff. I knew, I was in good hands, and it was done well that way. (Patient #3)

Participation in an RCT

For the patients, making a contribution to science and the hope that the novel therapy is superior to the established one, to which they normally would not have access, were important reasons for participating in an RCT. However, the equality between the two treatment approaches was a frequently cited prerequisite for soing so.

If the same goal or result, in inverted commas, comes out afterwards. Why not? (Patient #4)

On the flip side, some patients stated that they would not want to participate in an RCT and emphasized the importance of actively choosing their treatment alongside their physician to feel safe. For them, chance should not play a role in decision-making.

I would like to make up my mind, one way or the other. So, that there is a choice, right? But that depends on how affected you are and how large the tumor is. And it would be somehow helpful if a doctor said that you could do it like this or try it like that. So in someway together with the doctor. Because you cannot decide yourself. I mean, you usually have no previous experience, right? (Patient #6)