Appendix A. Scripts used in the study

Factual_Surgery

In this text you will be informed about a surgery for patients with early-stage non-small cell lung cancer

Early-stage non-small cell lung cancer can be treated in two ways. We will explain these two treatment options in this text. The most common treatment is surgery. A relatively new method is stereotactic radiotherapy. Below, you can find information about surgery.

SurvivalStudies directly comparing both treatment options are lacking. However, the evidence available shows that the survival rates after therapy are approximately equal. Professional caregivers agree that both treatment options are good options for patients. You will now receive information about surgery.

OutcomesThe outcome of cancer treatment is measured by the number of people who are alive five years after treatment. Five years after surgery, 74 out of 100 patients who were diagnosed with this type of lung cancer are still alive.

The procedureFor a surgery, you will receive general anesthetics. You have to stay in the hospital for approximately 5 days. The aim of the surgery is to remove the tumor and related lymph nodes completely. How much tissue is going to be removed depends on the size and position of the tumor. Often a part of the lung is being removed. Sometimes the lung has to be removed completely.

Certainty After surgery, a pathologist checks whether all malignant tissue has been removed and whether the lymph nodes are free from tumor cells. That way, it can be judged with high certainty whether the tumor has been removed completely. Within two weeks after surgery, you will receive this information from your physician. If the lymph nodes appear to contain tumor cells, additional chemotherapy may be needed in some cases. Chemotherapy is being administered through intravenous injection.

Side effectsAfter surgery, side-effects such as fatigue, pain, and nausea can occur. A sound proportion of patients experiences these side effects, often a few days to several months after the surgery. Pain is often felt in the chest wall. For chest wall pain patients are being prescribed painkillers for approximately 3 weeks. The side effects are temporary. Over time, the side effects of a surgery diminish. Three months after a surgery, no patient suffers from side effects anymore.

We hope to have provided you with useful information about a surgery for early-stage non-small cell lung cancer.

Factual_Stereotactic radiotherapy

In this text you will be informed about stereotactic radiotherapy for patients with early-stage non-small cell lung cancer

Early-stage non-small cell lung cancer can be treated in two ways. We will explain these two treatment options in this text. The most common treatment is surgery. A relatively new method is stereotactic radiotherapy. Below, you can find information about stereotactic radiotherapy.

SurvivalStudies directly comparing both treatment options are lacking. However, the evidence available shows that the survival rates after therapy are approximately equal. Professional caregivers agree that both treatment options are good options for patients. You will now receive information about stereotactic radiotherapy.

OutcomesThe outcome of cancer treatment is measured by the number of people who are alive five years after treatment. Five years after stereotactic radiotherapy, 68 out of 100 patients who were diagnosed with this type of lung cancer are still alive.

The procedureStereotactic radiotherapy is an outpatient therapy. You have to visit the hospital 3 to 8 times. You do not need to stay in the hospital, and you will not receive anesthetics. The aim of the stereotactic radiotherapy is to kill the tumor cells. The tumor is being radiated with high precision and a relatively high dose of X-ray. Radiation damages the DNA of tumor cells, and the tumor cell dies. Dead tumor cells are being removed slowly by the patient’s body. Lymph nodes are not being removed.

Certainty After stereotactic radiotherapy, the physician cannot judge with certainty whether the tumor has been removed completely. The physician cannot see whether a part of the tumor might have remained in the scar tissue. Therefore, the physician keeps an eye on this during follow-up consultations in the two years after stereotactic radiotherapy.

Side effectsDue to the high precision of stereotactic radiotherapy, patients hardly feel the therapy. Side effects like fatigue, nausea, and pain are being reported by a small proportion of patients. The side effects are temporary. Twelve months after the therapy, no patient suffers from side effects anymore.

We hope to have provided you with useful information about stereotactic radiotherapy for early-stage non-small cell lung cancer.

Narrative_Surgery

In this text, you will read the story of Jos. Jos is 67 years old, and was diagnosed with early-stage non-small cell lung cancer 1.5 years ago. He was treated by surgery.

After the diagnosis, the doctor explained to me that there were two treatment options: surgery or stereotactic radiotherapy. The latter is a difficult word for a somewhat newer treatment option. So I was allowed to choose: to cut or to irradiate.

Of course the doctor explained exactly what the differences were, but also said that the survival rates are quite equal.

I exactly remember the corresponding numbers: 5 years after surgery, 74 out of 100 patients are still alive.

Well ... I knew quite quickly that I would go for the surgery. Not that it is easy to undergo surgery, it really isn’t, but I wanted to get rid of that tumor as soon as possible. And because they also remove some of the lymph nodes, the pathologist can check whether all cancer cells are gone. So they can say within 2 weeks after the surgery whether they have succeeded in removing all the cancer. Besides that, I also know whether I would need additional chemotherapy if the lymph nodes appear to contain tumor cells. Chemotherapy is being administered through intravenous injection.

The certainty they could give was very important to me. With stereotactic radiotherapy, you remain uncertain for a much longer period. I think: it’s better to bite the bullet for surgery instead of being uncertain for years whether it’s really gone or not.

For the surgery I was admitted to the hospital. And I received complete anesthetics. I did not mind that. I have been operated before. Well, and then part of my lung was removed. Where the tumor was. With those lymph nodes. There was also another patient in my room who had his lung completely removed. This depends on how big your tumor is and where it is located exactly. So I was a little bit lucky.

Of course you do not notice anything of the surgery itself, but the days after... Well, the doctor already warned me that fatigue, pain and nausea are common side-effects. A significant proportion of patients is tired for the first 3 days after surgery. They really need to recover from the surgery and the anesthetics. Half of the patients also suffer from pain from the wound, especially in the chest wall, which can be a little but also pretty painful. Luckily, there are good painkillers and the pain can be controlled.

As far as I am concerned: I was quite tired after the surgery and also had severe pain in my wound. They did not have to make me laugh at that time. But luckily I got good painkillers. That helped. I was also nauseous, though. That's because of the anesthetics, eh. Anyway. After 5 days I was already allowed to go home. I took those painkillers for another week or three.

About 2 weeks after the surgery, I received the results from the doctor at the outpatient clinic. I remember that I was actually most nervous about that. And I was so glad when I heard that no tumor cells were left behind. I really started to cry then. Of joy of course. I could breathe a sigh of relief again. Literally and figuratively! After a month or three I felt like the old me again. I can work in my garden again. Weeding; just like my tumor; that has to be removed! And the flowers back in again. I will soon enjoy all those flowers coming up again.

Narrative_Stereotactic radiotherapy

Below, you will read the story of Renee. Renee is 69 years old and was diagnosed with early-stage non-small cell lung cancer 2 years ago. Renee was treated by stereotactic radiotherapy.

After the diagnosis, they explained to me that two treatment options exist. The tumor could be removed through surgery, which is quite common. But I could also choose for a newer treatment option: stereotactic radiotherapy. Well, I hadn’t heard of that before… But with stereotactic radiotherapy, they can radiate the tumor very accurately. They radiate less of the healthy tissues and they can radiate with a higher dose compared to conventional radiotherapy.

One thing that is quite equal for both treatment options is – very important – the survival rate.

Five years after stereotactic radiotherapy, approximately 68 out of 100 patients are still alive.

Both treatment options have their own pros and cons. So, I considered both options carefully. For surgery, you have to get hospitalized for a few days, of course. I was dreading that. That dependence, lying in a room in such an unfamiliar environment. Terrible. But, on top of that, I’m simply afraid of a surgery, there is always a risk of complications. And the pain and side effects that could last for quite long. Altogether, for me enough reasons to choose for stereotactic radiotherapy.

So I didn’t have to get hospitalized, but I had to go to the outpatient clinic a few times. That was fine with me, because I live near the hospital. I had to visit the hospital 6 times. How many times you have to visit the hospital depends on the size and location of the tumor. The number of visits for stereotactic radiotherapy can vary between 3 and 8 times. Well, during radiotherapy – and this is a quite technical story – the DNA of the cancer cell gets damaged. The cancer cell dies then. The body cleans the dead cells. You don’t really notice the treatment, you don’t feel anything. Anesthetics isn’t necessary. It’s great, right, that it’s so easy.

One thing that is unfortunate is that the doctors cannot be 100% certain about whether all cancer cells have been removed. Due to stereotactic radiotherapy, scar tissue is formed and doctors can’t see whether a part of the tumor might have remained in the scar tissue. Besides, lymph nodes are not removed, so they can’t check whether cancer cells are still in there. However, and this is a huge relief for me, the doctor keeps an eye on this during follow-up consultations.

After treatment with stereotactic radiotherapy, only a small proportion of patients experience side-effects like fatigue, pain and nausea. These side-effects last only for a short period of time. That’s what the pulmonologist told me. As for me, I didn’t experience side-effects at all.

Altogether, I endured that period very well. I was able to continue all my activities. I was able to babysit my grandchildren. That’s always a lot of fun! And I didn’t have to keep my hands off my bicycle. Meanwhile I’ve cycled some kilometers! My follow-up consultations were also all positive, fortunately!