Human Practices

Acknowledgement

It's extremely hard to put into words the amount of gratitude we have felt, as we went through the survey responses. We are deeply grateful to all those who took the time to answer our questions and gave us a wide range of their experiences and thoughts. Your valuable insights and experiences have provided crucial information for our research, and on cancer, treatments, and their impact on individuals and society. Truly, thank you all so much.

Although many of you have been through something unimaginably difficult,
You don't always have to manage on your own.

If you are a loved one of a cancer patient, it is important that your wellbeing is also being taken care of. The Finnish All About Cancer -website has information about services and support for loved ones here, and for patients here. The Mental Health Association's national crisis hotline offers immediate help for people in crisis and their loved ones on 010 195 2202 (Finland). Calls are confidential.

Introduction

To understand people’s experiences and opinions better about cancer, cancer treatments, and their side effects, we conducted two separate surveys. First survey was for people who were diagnosed with cancer (later referred to as the patient survey), and the second was intended for people without cancer (non-patient survey). The objective of the patient survey was to collect information and insights on cancer treatments and their side effects, on seeking information and communicating with healthcare professionals, and on the impact of cancer on different aspects of life. With the non-patient survey, we wanted to learn what people knew about cancer and cancer treatments, and how people's views have been influenced by the experiences of a loved one or acquaintance with cancer. Additionally, we wanted to compare the opinions between the patients and the non-patients. To address these topics, the surveys were divided into four parts: Part I – Demographic, Part II – Cancer knowledge and experiences, Part III – Communication and Information and Part IV – Social impact. Our surveys were available in both Finnish and English.

While creating these surveys, our team carefully took into consideration the ethical principles of research with human participants. First our team researched on our own about the ethics and what needs to be considered, and revised “The ethical principles of research with human participants and ethical review in the human sciences in Finland” -document provided by the Finnish National Board on Research Integrity TENK. [1] Based on this, we didn’t need an ethical review statement from a human sciences ethics committee. While making the surveys, we actively consulted Association of Cancer Patients in Finland. They also functioned as a main distribution channel for our patient survey among other cancer patient associations; Colores and Europa Donna Finland ry. After the surveys closed, we met with Association of Cancer Patients in Finland again and discussed the results, while ensuring that no laws such as General Data Protection Regulation (GDPR) was broken.

Part I - Demographic

For the patient survey, we received a total of 155 responses. Most of the respondents (95.5%) wrote their primary home country to be Finland. Majority (94.8%) of the respondents were female. The largest age group of respondents were 45–54-year-olds (28.4%), followed by the 55–64-year-olds (26.5%), 65–74-year-olds (21.3%) and 25–34-year-olds (11.0%). For the non-patient survey, we received 166 responses. Well over half (69.0%) of respondents wrote Finland as their primary home country followed by Indonesia (9.4%), Germany (3.5%) and USA (3.5%). Majority (65.7%) of respondents were female. The largest age group of respondents was 18–24-year-olds (47.6%), followed by 25–34-year-olds (31.3%), 35–44-year-olds (10.3%) and 55–64-year-olds (7.2%).

Compared with the demographic of the patient survey, the non-patients are younger and there is larger percentage of men and non-Finnish respondents. We discussed the high proportion of women who participated in the patient survey, with Jenni Tamminen-Sirkiä (the executive director of Association of Cancer Patients in Finland), and she also reported that women usually take more active part in the functions of the Association of Cancer Patients in Finland. Apparently, women seek peer support more than men, at least in the form of engaging with others in associations. [2] For the patient survey, we received more answers from people diagnosed recently (Figure 1). Around half (54.2%) of respondent were diagnosed with cancer between 2022 and 2024. Approximately one third (37.4%) of respondents were diagnosed between 2017 and 2021. The earliest year reported for cancer diagnosis was 1993.

Figure 1: Results to question for patients: “What year were you diagnosed?”

The fact that most respondents (94.8%) were women has had a significant impact on the responses to the survey. Thus, the more common types of cancer in women are more pronounced in the responses: Figure 2 shows that the most common type of cancer among respondents was breast cancer (46.7%), followed by colorectal cancer (10.6%), ovarian cancer (7.2%) and lung cancer (6.1%). Prostate cancer, which is common among men, does not appear in the results. However, other most common types of cancer for both sexes shown by for example the Finnish Cancer Registry’s Cancer 2022 statistical report, were lung and trachea cancer and colorectal cancer, which appear in the survey responses as common types of cancer. Globally, the most common type of cancer was tracheal and bronchus cancer and lung cancer, the second most common breast cancer and the third bowel cancer. [3,4]

Figure 2. Results to question for patients: “What type(s) of cancer have you been diagnosed with?”. The punctuation mark (*) marks answers that have been answered as open text to part “Other type, which?”. The answers were collected and turned into data.

Part II - Cancer Knowledge and Experience

Cancer Treatments

In terms of general knowledge about cancer and its treatments, we asked non-patients to evaluate their knowledge (Figure 3). Out of 166 respondents, 1.8% stated they do not know at all or almost at all anything about cancer, 37.3% knew a little, 44.6% said to have moderate knowledge, 13.9% said they know a lot, and 2.4% stated they know a lot and work in the field. These findings show that most respondents had at least a basic understanding about cancer and its treatments.

Figure 3. Results to question for non-patients: “How much do you think you know about cancer and its treatment?”

To find out whether for example, the prevalence of cancer treatment affects its awareness, we asked the non-patients what cancer treatments they had heard of while asking from the patients what cancer treatments they had received (Figure 4). The non-patients were the most familiar with chemotherapy (99.4%), surgery (93.4%), and radiation therapy (92.2%). Approximately half (51.8%) of the responders were familiar with immunotherapy and 41.0% with targeted therapy. Most of the patients (87.7%) told that they had undergone a surgery and 83.9% had received chemotherapy, 54.2% radiation therapy, 11.0% immunotherapy, and 9.7% specified targeted therapy. Three responders 1.9% were unsure about the treatments they had undergone. A significant number of patients, 72.3% (112 out of 155) reported receiving both surgery and chemotherapy, highlighting the common use of these two treatments in combination [2].

Figure 4. Results to questions: “What cancer treatments have you received?” (patients) and “Which cancer treatments have you heard of?” (non-patients)

Based on our results, the prevalence of cancer treatment doesn’t directly affect its awareness. We initially thought that the reason was maybe related to how long these treatments had been in place, but this turns out to not be fully true either. For example, chemotherapy has been given since 1949 and in combination for the first time in 1958. [5] On the other hand, immunotherapy is often perceived as relatively recent innovation, but the clinical results to treat tumors were first described in May 1893. However, the reason why the treatment was not adopted actively was the lack of a known action mechanism, among the risks of infecting patients with highly pathogenic bacteria. So, oncologists kept preferring surgery and radiotherapy. [6] Even though the first immunotherapy agent was approved by the US Food and Drug Administration (FDA) in 1986 [7], the first immunotherapy for cancer was approved in 2011 [8]. Since then, active research has been going on and as a result we can see that non-patients are quite aware of this treatment (51.8%), regardless of it not being used much yet (11.0% of the patients said to have received it).

When treating patients, an essential part of the treatment is to monitor the patient's ability to function during the treatment. We asked the patients how their treatment affected their physical activity levels compared to before starting the treatment. Specifically, half of the responders (49.7%) indicated that their physical activity decreased greatly, and 29.7% noted a decrease. In contrast, only 3.9% felt that their activity level greatly increased, while 5.8% said it increased, and 9.0% reported no effect at all. Three people out of 155 were unsure.

Figure 5. Results to question for patients: “How did your physical activity change during your cancer treatment compared to before you started it?”

These findings support that cancer treatments significantly impact physical activity, with many patients experiencing reduced levels of activity, likely due to treatment side effects. A study done in 2020 revealed that patients find it very difficult to engage in physical activity especially in public places, due to fear of overheating and infection, as well as insecurity due to hair loss. Physical activity has been shown to reduce side effects of the cancer treatment, by example increasing blood flow and therefore activating the sympathetic nervous system, so it really is a problem when side effects can drive people into these vicious cycles. [9]

Chemotherapy

Regarding chemotherapy, we asked the non-patients to evaluate their knowledge (Figure 6). A bit less than half 42.2% reported knowing a little and 41.6% had moderate knowledge. Only 10.8% said they knew a lot, and just one person indicated they were highly knowledgeable due to working in the field. This indicates that public awareness aligns well with the reality of cancer treatment, as chemotherapy remains one of the most widely used options for managing cancer. Chemotherapy is both the most known treatment (99.4%) and the second most frequently received treatment among patients (83.9%).

Figure 6. Results to question for non-patients: “How much do you know about chemotherapy?”

Most of the patients (82.2%) had undergone chemotherapy. The majority of the patients had received chemotherapy for the first time in recent years 2024–2021 (Figure 7), which corresponds well with the year of diagnosis (Figure 1). The open responses later in the survey strongly emphasized the duration of chemotherapy, which we didn’t take into consideration while creating the questions. A chemotherapy course (series of cycles) often takes 3 to 6 months. It is common to go through approximately 4 to 8 treatment cycles during that time. [10] This can affect the results of this question particularly, since we don’t unfortunately know for how long the patients have received chemotherapy and if they had to go through it again for another year.

Figure 7. Results to question for patients: “Which year did you receive chemotherapy for the first time?”

Overall, these results (Figure 7) reflect the ongoing incidence of cancer. One of the respondents said that they had received chemotherapy for the first time in 1995, which also illustrates the timelines in cancer treatment. It is good to keep in mind that the majority of those who have had cancer previous years and are older, (for example in case of breast cancer over 60% of the cases are found in women over 60–years-old [11]) don’t necessarily actively use internet as much, which also reflects to the absence of responders from earlier years. [2] Also, not everyone who has been cured stays active in cancer associations.

We then asked the patients about their expectations and thoughts of the efficacy of chemotherapy before and after the treatment (Figure 8). Before treatment, the majority, which was approximately half (49.6%) of the patients, expected chemotherapy to be effective while the rest thought it would be moderately (26.4%), extremely (18.6%) or mildly effective (8.5%). Nobody thought it would be not effective at all. After treatment, the opinions were more spread, but most opinions were now more on the positive side (extremely effective went up to 26.4%, and even thought effective decreased to 41.9%, moderately effective decreased also to 20.2% which insinuates positive outcome for the patients).

Figure 8. Results to questions for patients: “Before receiving chemotherapy, how effective did you expect the chemotherapy treatment to be?” and “After receiving chemotherapy, how effective would you rate it in treating your cancer?”

Overall, before and after treatment patients believed chemotherapy to be effective (both times approximately 68.3% ±0.1 considered chemotherapy to be effective or extremely effective). These results indicate that most of the patients felt that the treatment met their expectations. An issue regarding the readability of the data, is that Figure 8 doesn’t consider the individual changes in opinions. Therefore, we took the raw data and compared the change in individuals’ opinions separately, by creating a table, color coding the answers and writing down the changes for example from “effective to mildly” (Figure 9). After, we created a new table which counted the answers based on our conditions being the exact text (Table 1).

Figure 9. The raw data curation into readable data, based on the questions for patients: “Before receiving chemotherapy, how effective did you expect the chemotherapy treatment to be?” and “After receiving chemotherapy, how effective would you rate it in treating your cancer?”

Table 1. The results of did the patients’ opinions change regarding efficacy of chemotherapy before and after receiving it, and if not, how did they change. The bolded texts “Extremely, Effective” etc., state the percentage of answer being the same before and after chemotherapy. The plusses (+) and minuses (-) mark the positivity and negativity of the change. None of the opinions started from not effective at all, so therefore those rows have been left out from the table.

Half of the patients’ (50.4%) expectations were met with better and worse, since their opinions didn’t change after receiving chemotherapy (marked with bolded text in Table 1), and respectively the other half’s opinion changed, almost equally as much negatively (23.2%) and positively (26.4%). The opinions changed with 8.8% of the patients, from effective to extremely effective (positive change), effective to moderately effective (negative change) and in a roundabout way moderately efficient back to effective (positive change) with each. Overall, the data suggests that there is a significant degree of individual variation. Factors such as patient health, cancer type and what knowledge and expectancy is given by medical professionals before the chemotherapy, may influence these outcomes. Further research would be needed to understand also other factors contributing to the expectations regarding chemotherapy efficacy.

Additionally, to patients’ experience, we also asked the non-patients, how effective they believed chemotherapy to be in cancer treatment. A significant majority, 69.3%, rated it as somewhat effective, 15.7% said very effective and 13.8% considered it as slightly effective. However, a small percentage, 1.2%, believed it to not be effective at all. This reveals the majority believed in the effectiveness of treatment however, patient’s firsthand experiences lead to a wider range of opinions.

Chemotherapy and Side Effects

Regarding side effects of chemotherapy, we asked the patients how severe they expected them to be and how they turned out (Figure 10). A bit less than half (44.2%) expected severe side effects, 28.7% expected moderate side effects, 20.2% expected very severe side effects and 11.6% expected mild side effects. Therefore 64.3% of respondents expected severe or very severe side effects. It’s good to note that this survey was conducted after these respondents had already received chemotherapy and therefore their reported expectations might be skewed as they are not truly collected before their chemotherapy treatment.

After chemotherapy, the patients assessed the side effects to be moderate by 37.2%, severe by 29.4%, very severe by 16.3% and mild side effects by 16.3%. Therefore, 45.7% of respondents reported experiencing severe or very severe side effects. Compared with the expectations, people generally expected more severe side effects than what they experienced, which tells of how chemotherapy is perceived. Still, majority of people (82.9%) experienced moderate to very severe side effects.

Figure 10. The questions for patients: “Before receiving chemotherapy, what was you expectation of the side effects?” and “After receiving chemotherapy, how would you rate the severity of your side effects?”

We also asked people to rate the severity of different chemotherapy side-effect based on their experience from no experience – mild – moderate – severe – very severe (Figure 11). Based on the results the most common side effect is weakness with only 2.3% of respondents reporting no experience of this side effect. The second common side effect is losing hair, which was also rated as the most severe side effect with 62.0% respondents rating it as very severe. The least common side effect is vomiting with 63.6% reporting no experience and 22.5% rating it as mild. The second least common side effect appears to be heart symptoms with 51.9% reporting no experience and 32.5% rating heart symptoms as mild.

Figure 11. The questions for patients: “Have you received these side effects from your chemotherapy treatment and how strong would you rate them?” Navy blue indicates no experience, light green mild side effects, yellow moderate side effects, orange severe side effects and red very severe side effects. *Cognitive changes are related to thinking, learning, understanding or remembering.

A paper published in 2023 looking into patient-reported side effect of chemotherapy, reports fatigue as the most common side effect (87.0%) followed by loss of appetite (71.4%) and diarrhoea (49.4%) [12]. In our patient survey loss of appetite was experienced by 83.7% and diarrhoea by 67.4%, numbers even higher than those reported in the paper.

On top of the side-effect that we asked about in the survey, patients reported a wide range of different side effects including fever, insomnia, nail and skin problems (rashes, itchiness, thinning), infection due to weakened immune system (pneumonia, trigger finger), weight loss or gain, hormonal problems (thyroid, pituitary gland), changes in body temperature (sensitivity to cold, sweating), changes in sense of taste, sexual reluctance, early menopause and infertility. In conclusion, our results show that people experience a wide range of different side effects, and the experience varies a lot between people even if some of the side effects are experienced by most. This can be affected by different chemotherapeutic agents used in treatment. In the study by Katta et al., they noticed a significant effect of a patient’s cancer type on the frequency of experienced side effects [12].

To address where our motivation sparked from, our model drug doxorubicin, we also asked if patients had received it and 10.9% said they had and 14.0% were not sure. However, when asked about side effect of doxorubicin, many pointed out that it is hard to distinguish between effects of different treatments and drugs since multiple agents are often combined in treatment. Some of the patients told us that they had received other chemotherapy drugs, such as Docetaxel, Carboplatin and R-CHOP, ABDV or BEACOPP regimen.

We were deeply moved by the personal stories of side effects shared by patients. To help you understand their experiences, we've included some of their quotes below.

“I could only sleep a couple of hours a week after the chemo. My head was all messed up. Later I was given a sleeping pill which helped me sleep a bit better.”

“Taste changes - almost all food and drink, including fresh tap water,
tasted either like cardboard and sawdust or downright awful.”

“Fatigue and feeling uncomfortable. Days passed lying down,
with no strength to do anything.”

“Neutropenic pneumonia, which led to intensive care and a long-term decline in physical fitness. It was a shame when I could no longer play with my children and could not get on and off the floor with reasonable difficulty.”

“Since the chemotherapy, there has been nausea and loss of appetite, which exacerbates the underlying fatigue.”

While the immediate side effects of chemotherapy may be well-known, it's important to consider the lasting consequences. Almost half of the patients (46.5%) told us that they had experienced long-term side effects, besides the fact that many of them had received chemotherapy for the first time in recent years. Therefore, it wasn’t surprising when 32.6% of patients were not sure if they had experienced long-term side effects, because it can be challenging to distinguish whether there will be long-term effects or not. Rest of the patients (20.9%) had not suffered any long-term side effects.

For long-term side effects respondents mentioned neuropathy, feeling tired, weakened balance, stiffness and pain in joints, changes in gut-function, cognitive changes (brain fog, loss of focus, forgetfulness), weakened eyesight and hearing, heart symptoms, hormonal problems (hypothyroidism), sexual reluctance, menopause, infertility and more.

“Neuropathy affects many things. Hands or fingers are so numb,
that even simple actions are challenging.” 

“Poor fitness, low energy levels, continuing fatigue, hair loss,
severe daily tinnitus, makes life difficult in general.”

“Fatigue, insomnia and cognitive symptoms (impaired memory, reduced concentration, brain fog). I have had to take long periods of sick leave because I am unable to do information-intensive work. I have also had to stop exercising because my body can no longer take it.”

Besides side effects experienced by the patients, we asked the non-patients to choose the side effect that they associate with chemotherapy (Figure 12). We wanted to know if the idea of chemotherapy side effects aligns with patient experience. The most voted side effects were hair loss (94.0%), weakness (91.0%) and nausea (84.3%) followed by loss of appetite (73.5%) and vomiting (70.5%). Based on the patient survey results, hair loss and weakness were the most common side effects and non-patient survey shows that those effects are also known (Figure 11). Nausea and loss of appetite are also common side effects and known. Vomiting is often (70.5%) associated with chemotherapy but majority (63.6%) of patients said that they had not experienced it. On the other hand, the least known side effect seems to be peripheral neuropathy (11.4%), but majority (68.2%) of patients said that they are experiencing it. Other not so well known, but commonly experienced side effects were cognitive changes and constipation.

Figure 12. The questions for non-patients: “What side effects do you associate with chemotherapy?” *Cognitive changes are related to thinking, learning, understanding or remembering.

In the open response area, non-patients mentioned fatigue, changes in taste and smell, skin and nail changes, weak immunity, feeling cold, hormonal changes, weight loss and negative mental health effects, showing that some respondents had a more diverse idea of chemotherapy side effects. We discussed these results with Jenni Tamminen-Sirkiä, and she pointed out that often non-patients associate more visible side effects with chemotherapy. Side effects such as peripheral neuropathy and cognitive changes are often something that others than the patient cannot notice. [2]

From non-patients we also asked them if they knew someone who had received especially chemotherapy (64.9% knew and 35.1% didn’t) and how severe side effects they thought those people received (Figure 13).

Figure 13. The questions for non-patients: “How would you rate the severity of chemotherapy side effects based on your knowledge of their experience?”

The graph shows that majority considered the side effects to be severe (39.8%), moderate (31.6%) and very severe (21.4%). Compared with how severe patients rated the side-effects, non-patients rated side effects to be more severe. Patients might rate side effect lower, because they are better able to place the experience on a scale compared to other patient’s experience. Patients more than non-patients might know a lot about possible side effects and might have interacted with a lot of people experiencing severe side effects, for example in peer-support groups.

We then asked the non-patients, in what way has the patients experience of chemotherapy affected their own view on chemotherapy. The thoughts were similar as with cancer patients. A lot of people said it seemed very difficult, and a lot of people didn’t realize that it requires many treatment cycles. On the other hand, some of the non-patients said that it wasn’t as scary anymore now that they knew more about it. Many of the non-patients were still left conflicted about chemotherapy:

"I now wonder if it's even worth giving chemotherapy if you have advanced cancer. It's everyone's decision, of course, but if I were in that situation, I think I would refuse chemotherapy. But if the prognosis is good, the chance of a complete cure is always worth the suffering."

"I don't know if I would agree to similar treatments myself,
because they didn't work in the end but had a significant impact on quality of life."

Part III - Communication and Information

Communication with Healthcare Professionals

Clear communication and trust between the patient and healthcare provider is an essential part of high-quality care. When both parties understand and listen to one another, it is possible to make better treatment decisions and reduce malpractice, thus improving treatment outcomes. More than half (64.52%) of the cancer patients felt that they had received enough clear information from healthcare professionals. On the other hand, 28.3% disagreed and 7.1% of the participants weren’t sure. This corresponds to the results of another survey conducted in 2023, by Association of Cancer Patients in Finland, which states that one third did not feel that they had received enough information about the efficacy, safety and quality of the medicine. [13]

To cover more of the aspects of the communication between the patients and healthcare, we asked the patients to rate how satisfied they were with the quality and extend of communication regarding their cancer diagnosis, treatment options and how they work, side effects and how to manage them (Figure 14).

More than half of the patients were satisfied (31.6% somewhat and 29.1% very) with the communication regarding their diagnosis. Yet almost one third (45 participants out of 155) were somewhat or very dissatisfied (17.4% and 11.6%). Opinions were similar regarding the communication of different treatment options, but instead of being dissatisfied (8.4% very and 10.3% somewhat) patients felt more neutral (21.9%). The patients were the most satisfied with the communication about how the treatment works, with 36.1% being very and 39.4% being somewhat satisfied. Only 1.9% answered that they were very dissatisfied, and 6.5% somewhat dissatisfied while 16.1% were neutral.

A big portion of the patients felt neutral towards the communication about the side effects (26.5%) and how to cope with them (27.1%). According to patient experience, the side effects were communicated a bit better than how to cope with them. When looking at the Figure 14 part “Side effects of your treatment”, 29.0% were somewhat and 15.5% very satisfied, and accordingly patients were somewhat (20.6%) and very dissatisfied (8.4%) with the communication. Comparing these to “How to cope with the side effects”, patients were more dissatisfied (11.0% very dissatisfied and 24.5% somewhat).

Figure 14. The questions for non-patients: “How satisfied were you with the quality and extent of communication between you and medical professionals (doctor, nurse, other) considering the topics below?”

Overall, the matters related to side effects seem to be less clearly communicated than the treatment itself. Similar knowledge was obtained in the Adherence to treatment -survey where only half of the responders said that they had received information about the possible side effects from the pharmacy, even though 90% did experience side effects [13].

Commitment to treatment is not only influenced by knowledge of the purpose, benefits and side effects of the medication, but also by the experience with the healthcare professionals. Out of 155 patients, 87 told us more about their experience regarding communication with the medical professionals. Many of the answers were stating that they have had good communication, and their nurses have been emphatic and caring.

"The staff at the chemotherapy and radiotherapy departments are absolutely wonderful. Overall, a positive surprise for the whole cancer treatment."

Still, many of the patients told us that their symptoms had been downplayed often. Overall, many people had both negative and positive experiences, mostly depending on the treatment unit or change of doctors. For example, quotes from patients:

“I called the cancer polyclinic about unbearable nerve pain in my legs -
I was advised to rest and take Panadol.”

“I have a genetic variant that clears another cytostatic agent I use from my body more slowly than normal.
When the side effects came with a delay (e.g. hair loss), the doctor did not believe it was due to the cytostatic.”

Many of the answers also stated that it was hard to get a hold of their doctor which seems to be at least partially due to continuous workload on the heath care sector, at least in Finland [14]. Many patients perceived the communication as inhuman, as many of the patients heard about their diagnosis either on the phone or by reading it themselves from OmaKanta (Finnish nationwide online service where citizens’ data is stored). The complete lack of communication can also yield sometimes to very extreme situations. For example, one of the responders said:

“I was not informed of the radiologist's suspicions of cancer in my CT scans and as a result my cancer diagnosis was delayed by years and instead of a 3 cm curable cancer tumour, I have to be treated for a widespread incurable cancer.”

In some of the cases, the patients said that they felt that the oncologist didn’t know how to comfort them. They were described as becoming paralyzed and being arrogant, cold and distant. The issues regarding the interactions with health care professionals are extremely complicated. Some professionals might naturally get along with people very well, while others don’t since everyone is an individual with their own emotions. One thing that might have an influence on this, is how doctors learn and are taught to empathise during their education’.

‘Sidenote: The education of the doctors in Finland can also reflect to the communication. In multiple M.D. degree structures, where the overall minimum credits are 360, the minimum amount of student credits regarding patient and grieving patient confrontation seems to be around 10–15 credits. This is hard to distinguish, because the course descriptions and intended learning outcomes do not clearly state how much they teach regarding patient confrontation. Usually, the main point of the courses is on for example, how to how to take a holistic view of the patient's lifestyle, for example diet, when considering a diagnosis, and not in how to address these issues with the patient. [15,16] Additionally, it does seem that in some of the general course descriptions, for example in “Cancer and palliative care”, one of the learning outcomes is to “manage a good non-verbal and verbal interaction when dealing with a cancer patient”. This does not show when the language is switched into English. [17]

Information Sources and Clarity

We asked both the patients and non-patients, where they had received information from regarding cancer and cancer treatments (Figure 15). The most common shared information source for patients and non-patients was hearing about people’s experiences online and other media. Purposeful online searching and reading scientific articles were more popular among the patients. Unmet information needs are one recorded problem among cancer patients, so to fix this the patients often seek out more from additional sources to better understand their health condition. [18]

Figure 15. The questions for patients and non-patients: “Where have you received information from about cancer and cancer treatment?”

The results varied mostly with the source being medical professionals (patients 82.7% and non-patients 29.5%), cancer associations (patients 62.2% and non-patients 12.7%) and school and other education (patients 9.0% and non-patients 51.2%). Results regarding medical professionals and cancer associations aren’t surprising since when person gets diagnosed, these are usually the first ones to approach. The information source being school and other education seems to be significantly different between the patients and non-patients (9.0% compared to 51.2%).

Regarding the clarity of the information, we asked the patients to evaluate, had they found enough clear information about cancer in general, their cancer type, treatment, side effects and how to cope with them. From non-patients we asked only about cancer in general, treatment and the side effects.

For most of the topics, cancer patients had been found and received enough clear information (Figure 16). The only topic that the majority answered moderately, was regarding how to cope with the side effects (41.30%) and similarly a little was answered by 19.3%.

Figure 16. The questions for patients: “Overall, have you been able to find or receive enough of clear information about the topics below?” The percentages in grey are answers to “Not at all”.

Based on the non-patients’ answers, the clearest information available has been about cancer in general (35.5% enough). Still majority felt regarding all the topics, that there has been enough clear information available only moderately or a little. (Figure 17)

Figure 17. The questions for non-patients: “In your experience, is there enough of clear information available about…” with the topics “Cancer in general”, “How cancer treatment works” and “Cancer treatment side effects”.

Overall, it seems that both the non-patients and patients have received and found at least moderately clear information about the topics. This insinuates the need for collective, easily accessible and low-threshold information source regarding cancer, its treatments and their side effects to mention.

Education and Health Campaigns

We asked both patients and non-patients did they receive enough information about cancer and its treatment during their education as adolescents, around the age of 13-18. The opinions varied a lot with the patients, 76.8% saying that they received no information at all. With non-patients the opinions were more evenly divided, 31.3% saying that they received no information at all, 42.8% receiving a little and moderately 20.5%. Enough amount of information was only received by 1.9% of the patients and 5.4% of the non-patients. (Figure 18)

Figure 18. The questions for both patients and non-patients: “In your opinion, did you receive enough information about cancer and cancer treatments during your education (around the age of 13-18)?”

These results are broadly explained by the age of the respondents. The education and knowledge regarding cancer has improved over the years [2], and majority of the cancer patients were aged between 45–74, while non-patients were mostly 18–34 years old. One of the patients commented:

“In the 1960s, children were not told anything about cancer, especially in schools! Adults hushed their voices when someone mentioned the scary word cancer. At that time, cancer meant that the person who had it would die soon, and children were not told about it.”

Regarding health campaigns about cancer and its treatment done by public and private sectors, the opinions among patients and non-patients were almost the same. More than half of the participants said that health campaigns deal with cancer and cancer treatment moderately well. Approximately 30.0% of both patients and non-patients said that health campaigns did poorly, and averagely 13.8% thought they did well.

Figure 19. The questions for non-patients: “How well do you think public or private sector health campaigns deal with cancer and cancer treatments?”

As a follow-up question, we asked people to openly tell what could be done to improve the public awareness of cancer and its treatments. Majority of the non-patients’ answers (around 35.0%) stated that the public awareness and understanding of cancer and its treatments could be improved by affecting the teaching in schools. Luckily, this is nowadays actively being done [2]. Another popular opinion among both surveys was that campaigning in different media sources should be more visible. Many participants also highlighted the importance of making the information easily accessible, for example by creating a collaborative website and tables that would summarize the key points regarding cancer: prevention, recognizing symptoms, different cancer types and treatments. A good example of successful campaigning is Pink Ribbon [19], which has become a universal symbol of breast cancer. Many people were hoping that similar campaigns would be arranged with other types of cancer as well, such as prostate cancer.

People also answered a lot, to what should be taught regarding cancer. This did vary a bit in the answers. Some said that the education should focus more on different cancer types, treatments and side effects, while other thought that the focus should be mostly on how to prevent cancer and how to recognize the most common symptoms. Many answers did say that all the aspects are equally important, but there should be some sort of distribution of what is told to whom; cancer is a vast topic and there are many other diseases that would deserve a lot of recognition as well.

One good point that was made, was that nowadays people are proficient in languages, and there could be for instance links to the latest research articles from abroad. Some respondents of the patient survey also pointed out that knowledge around cancer can sometimes be misleading. For example, people who have lung cancer despite of never smoking, feel that they are stigmatized and thought to have caused their own disease. Many respondents also talked about how people do not understand the life-long effects of experiencing cancer and cancer treatment.

“What is not understood is that along with the gratitude of life continuing,
comes the sadness of a permanently damaged body.”

Part IV - Social Impact

Cancer, Social Life and Career

With our patient survey we wanted to also investigate how cancer and cancer treatments affect different areas of people’s lives such as career and social life. We asked patients to rate the impact of cancer and cancer treatment on their relationships and social life. The answers varied with 11.6% reporting extreme impact, 30.3% significant impact, 27.7% moderate, 19.4% mild and 11.0% reporting no impact. (Figure 20)

Figure 20. The questions for patients: “How much have cancer and its treatment affected your relationships and social life?”

To understand more the reasons why they answered the way they did, we then asked patients to tell more about their experiences. Many of the patients mentioned for example weakness, treatment side effects, risk with weakened immune system and lack of energy limiting their ability to take part in social activities. Many also mentioned that other people don’t always know how to act and what to say around them, leading into a feeling of isolation. The patients reported that some of their relationships became stronger due to their experience with cancer. All in all, people’s answers reflect the diversity of experience between people and the complex emotions that come along with cancer.

“Mainly because I've been feeling sick,
I haven't had the energy to go and be around people.”

“It decreases overall quality of life.
I feel ashamed, useless, sometimes jealous.”

“Some relationships have deepened, and I value important relationships even
more after the illness. The negative impact of breast cancer and its
treatments on relationships and sexuality is significant.”

“Social activity has fallen considerably. Not everyone knows how to relate and is unaware of the effects of cancer treatments. My own frailty and risk of infection has made me think twice about attending events.”

“You don't dare to show up anywhere, you don't want to see anyone and looking in the mirror makes you cry. Isolation feels like the best option.”

“People close to me became even closer,
staying in close contact, offering help and asking how I was doing.” 

Besides other social life, we also asked the patients to evaluate the impact of cancer and cancer treatment on their career or job. The opinions in this question were very evenly distributed among the patients. Of all the patients, 24.5% reported extreme impact, 12.3% significant impact, 20.6% moderate, 20.6% mild and 21.9% no impact. Even though the majority felt that there was moderate or bigger impact on career, still around 42.5% didn’t consider it affecting their career or jobs. This is also really much depending on the cancer type and what types of treatment they are receiving [2].

Figure 21. The questions for the patients: “How much have cancer and its treatments impacted your career or job?”

We then asked people to tell more about their experiences. People mentioned long sick leaves and it being challenging to go back to work. Some people mentioned accommodations such as working less time. Some people had to retire due to cancer. Others mentioned changing careers, and some told that experiencing cancer inspired them to choose medicine or biology related fields to study.

“The workplace has tried to find solutions to keep me going in my working life.
And so everyday life goes on.”

“Still not working a full-time job. Energy is still too low.”

“The impact is huge for artisan/craftsman work,
and the cancer doctor hasn't taken my concerns seriously.
I can't work remotely, and the neurological effects affect my motor skills.”

Second-hand Impact

In the non-patient survey, 91.0% of people reported knowing someone diagnosed with cancer. We then asked them to rate how much that has affected their life and their view on cancer. With both questions the average rating is between moderate and significant, with effect on “your own life” averaging closer to moderate.

Figure 22. The questions for non-patients: “How much has knowing a person diagnosed with cancer affected your own life and your view on cancer?”

We also asked the non-patients to elaborate on their answers with open form question. The responses revealed a deep emotional impact of having a loved one diagnosed with cancer. Knowing a person with cancer has made them for example to think differently about life, what is important and mortality. Sicknesses doesn’t ask permission to occur person, it can happen to anyone at any time. Many non-patients also told that they had become more aware of their own health and made changes to their lifestyle, such as quitting smoking and exercising more. Some individuals had begun checking themselves more regularly, for example in case of breast cancer. Even thought there was many who told that they had to take a gap year from school or from work to grief and cope with loss and the sickness, many people had hope and were expressing how life should be lived in the moment.

Overall, the impact of cancer and its treatment’s side effects is significant, affecting not only the patients but very profoundly the loved ones as well. The effort of the loved ones should never be taken for granted, and therefore it’s important that they have help available for them as well.

“You wonder if you will get cancer yourself and what kind of treatments you would like. I also took out cancer insurance.”

“Having cancer is indeed traumatic, but even a serious diagnosis is not always fatal. It gave me faith that a cure is possible.”

“I did an internship in social work in the cancer ward of a specialist hospital, and my parent’s family have a history of cancer. The internship and the experiences of those close to me gave me the idea that life is worth living in the here and now. You can prevent cancer to some extent through your life choices, but ultimately life is unpredictable and can throw up all sorts of obstacles. So, there is no point in living in fear of cancer.”

Limitations

Our survey has potential limitations, such as language bias. Our survey was provided in both Finnish and English, but as the demographic shows, the participants to both surveys were also outside of Finland and from countries where English is not the main language. Noteworthy is also, that the creators of this survey are not native English speakers, and therefore translation errors might have occurred while translating both the questions and answers. Regarding the questions, we did seek out to couple of people who were native in English to review the questions for spelling and clarity. We also used different translators, proofing tools, partially Large Language Model, as well as multiple websites for spelling and language cross check, (DeepL Translator, sanakirja.fi, Gemini and Google translate) to try ensuring in the best possible way that the language bias would be kept to a minimum.

Another noteworthy limitation to the survey was sex. For patients with specific types of cancer, such as breast -, and prostate cancer, gender has a major impact. This has occasionally affected the results, which we have noted while addressing results of those questions. For example, regarding education and cancer knowledge, age can play a significant factor since over the years, education and information sources have changed rapidly.

Additionally, it is always good to keep in mind, that as we are all individuals, we interpret questions differently. This became apparent already while translating the questions. Also, with the open questions, some participants answered slightly past the question. On the other hand, this was a positive thing for us, because we felt that we got a lot more from the answers when people also answered questions, we hadn't thought of asking ourselves.

Conclusions

Our survey yielded much more information and was more comprehensive than we could have imagined. Cancer and cancer-related topics are so diverse that a survey could be conducted for each aspect separately. The answers gave us a profound understanding not only of the side effects, but how cancer and other holistic diseases affect the patients and their loved ones.

In both surveys, we asked people their opinion on how important it is to develop new cancer treatments to avoid the side effects of existing treatments. Majority of people think it is highly important, including 77.7% of non-patients and 84.5% of patients. From non-patients 0.6% think that existing treatments are enough, 3.6% think that developing new treatments is slightly important and 18,1% rate it as quite important. From patients 2.6% find it slightly important and 12.9% rate it as quite important. Patients find the development of new treatments slightly more important than non-patients, which reflects their own experience with treatment and side effects. (Figure 23)

Figure 23. The questions for non-patients: “How important it is to develop new cancer treatments to avoid side effects of existing treatments?”

Although cancer treatments have come a long way over the years, it is clear that there is still a need to develop them further. With a wide range of different cancer types, such as breast, prostate, colorectal, trachea, and brain, etc. different treatments are a necessity. Also, adult’s bodies can withstand more intensive treatments compared to children or elderly people for example. Therefore, the age of patients should also be considered when deciding on the form of treatment.

The treatment planning for cancer is always done in collaboration with the healthcare provider. Clear and effective communication between the patient, loved ones and with the healthcare unit is the key for treatment adherence and thus effective treatment. Majority of the patients were both pleased and unpleased with the communication with the healtcare, and in many cases the patients did not feel that they had been properly heard. Patients have gotten enough clear information from for example medical experts, cancer associations and by researching more themselves, while the non-patients have learned about cancer and cancer treatments mostly from people they knew, from school and from different media. The non-patients felt that there wasn’t as much clear information available regarding cancer treatments and side effects, as much as about the cancer in general. The people answered, that to raise awareness regarding cancer topics, more extensive campaigning could be done like in Pink Ribbon’s case. However, over the years, awareness and understanding of cancer has increased.

Regarding the information, one thing that people were not aware of was the long-term side effects of chemotherapy. These include for example, peripheral neuropathy, feeling tired, changes in gut function, hormonal problems, infertility, cognitive changes and so on. The side effects therefore aren’t only momentary like hair loss, weakened immune system and fever, but can be also both. Side effects affect the patients' lives in many ways.

Besides physical and mental affect, they also interfere with social lives of both the patients and loved ones. Many of the responders talked about difficulties to engage in regular activities such as going outside and work and seeing friends due to shame of losing hair for example. Also seeing a loved one going trough such a hard time had profoundly affected the non-patients. Some of the people became fearful of getting sick themselves, but many of the responders also stated how they had learned to appreciate life as it is and live in the moment.

When designing a new type of therapies to treat cancer for instance, new is not always better, and with more targeted approaches we have to also ensure that efficiency is not decreased. Improving quality of life is the main goal of all medicine and therapies, but especially with cancer treatments this doesn’t always seem to be the case considering the side effects.

References

Kohonen, I., Kuula-Luumi, A. & Spoof, S. The ethical principles of research with human participants and ethical review in the human sciences in Finland. Helsinki: Finnish National Board on Research Integrity TENK, 2019. 30 s. ISSN 2669-9427 (pdf). Available at: (https://tenk.fi/sites/default/files/2021-01/Ethical_review_in_human_sciences_2020.pdf)
Tamminen-Sirkiä, Jenni. 2024. The executive director of Association of Cancer Patients in Finland. Verbal interview 16.9.2024.
Pitkäniemi, J., Malila, N., Heikkinen, S., & Seppä, K. Syöpä 2022. Tilastoraportti Suomen syöpätilanteesta. Suomen Syöpäyhdistys, Helsinki 2024. ISSN 2814-4333 (pdf). Available at: https://syoparekisteri.fi/assets/files/2024/06/Syopa-2022.pdf (last accessed September 2024).
World Cancer Research Fund International. Worldwide cancer data. 2024. Available at: https://www.wcrf.org/cancer-trends/worldwide-cancer-data/ (last accessed September 2024).
National Cancer Institute. Milestones in Cancer Research and Discovery [web resource]. Updated August 31, 2020. [accessed 23.9.2024]. Available at: https://www.cancer.gov/research/progress/250-years-milestones
Dobosz, P., & Dzieciątkowski, T. The Intriguing History of Cancer Immunotherapy. Front Immunol. 2019 Dec 17;10:2965. doi: 10.3389/fimmu.2019.02965. PMID: 31921205; PMCID: PMC6928196.
Eno J. Immunotherapy Through the Years. J Adv Pract Oncol. 2017 Nov-Dec;8(7):747-753. Epub 2017 Nov 1. PMID: 30333937; PMCID: PMC6188092.
Johns Hopkins inHealth. Immunotherapy: Precision Medicine in Action [web resource]. [accessed 23.9.2024]. Available at: https://www.hopkinsmedicine.org/inhealth/about-us/immunotherapy-precision-medicine-action-policy-brief
Misiąg W, Piszczyk A, Szymańska-Chabowska A, Chabowski M. Physical Activity and Cancer Care-A Review. Cancers (Basel). 2022 Aug 27;14(17):4154. doi: 10.3390/cancers14174154. PMID: 36077690; PMCID: PMC9454950.
Cancer research UK. Treatment cycles and courses of treatment. [web resource]. Last reviewd 28 Jun 2023. [accessed 23.9.2024]. Available at: https://www.cancerresearchuk.org/about-cancer/treatment/cancer-drugs/how-you-have/treatment-cycles-and-courses#:~:text=A%20series%20of%20cycles%20of,treatment%20cycles%20during%20that%20time.
Cancer Society of Finland. All about cancer >> Breast cancer. [web resource]. [accessed 23.9.2024]. Available at: https://kaikkisyovasta.fi/tietoa-syovasta/syopataudit/rintasyopa/
Katta B, Vijayakumar C, Dutta S, Dubashi B, Nelamangala Ramakrishnaiah VP. The Incidence and Severity of Patient-Reported Side Effects of Chemotherapy in Routine Clinical Care: A Prospective Observational Study. Cureus. 2023 Apr 29;15(4):e38301. doi: 10.7759/cureus.38301. PMID: 37261144; PMCID: PMC10226821.
Association of Cancer Patients in Finland. 2023. Survey: one in ten people with cancer voluntarily reduce their dose or stop taking their medicine altogether. [web resource]. [accessed 23.9.2024]. Available at: https://www.syopapotilaat.fi/ajankohtaista/verkkouutiset/kysely-syopaan-sairastuneista-joka-kymmenes-vahentaa-omatoimisesti-laakeannosta-tai-lopettaa-laakkeen-kayton-kokonaan/
Finnish Institute of Occupational Health. Study: Healthcare and social welfare must also lead recovery from work. Press release 15.08.2024. [web resource]. [accessed 20.9.2024]. Available at: https://www.ttl.fi/en/topical/press-release/study-healthcare-and-social-welfare-must-also-lead-recovery-from-work
University of Turku. Degree programme in Medicine, starting year before 2022. [web resource]. [accessed 20.9.2024]. Available at: https://opas.peppi.utu.fi/en/programme/89769?period=2022-2024
University of Oulu. Degree programme in Medicine (MD). [web resource]. [accessed 20.9.2024]. Available at: https://opas.peppi.oulu.fi/en/programme/39290?period=2024-2025
University of Oulu. Oncology and palliative care 4 ECTS. Course description. [web resource]. [accessed 20.9.2024]. Available at: https://opas.peppi.oulu.fi/en/course/083060A/7423?period=2024-2025
Lange-Drenth, L., Schulz, H., Endsin, G. & Bleich, C. Patients With Cancer Searching for Cancer- or Health-Specific Web-Based Information: Performance Test Analysis. J Med Internet Res. 2021 Aug; 23(8): e23367. Published online 2021 Aug 16. doi: 10.2196/23367 PMCID: PMC8406111 PMID: 34398801
National breast cancer foundation inc. Breast Cancer Ribbon. [web resource]. [accessed 20.9.2024]. Available at: https://www.nationalbreastcancer.org/breast-cancer-ribbon/

Human Practices

Integrated Human Practices

Getting Started

Yin Yin (Advisor)

Reason for contact:

Key discussion points:

Findings and implementations:

Dr. Mustak Ibn Ayub

Reason for contact:

Key discussion points:

Findings and implementations:

Understanding the problem

Association of Cancer Patients in Finland

Establishing Collaboration

Diving Deep

Hearing from the Patients and the Public

Developing a Solution

Dr. Virpi Talman

Reason for Contact

Key Discussion Points

Findings and Implementation

Alba Sanz Velasco (Advisor)

Reason for Contact

Key Discussion Points

Findings and Implementation

Dr. Shiqi Wang (Advisor)

Reason for Contact

Key Discussion Points

Findings and Implementation

Dr. Yu Zhou

Reason for Contact

Key Discussion Points

Findings and Implementation

Dr. Michael Jeltsch

Reason for Contact

Key Discussion Points

Findings and Implementation

Orion

Reason for Contact

Key Discussion Points

Findings and Implementation

Our Future Vision

Developing COALES

What if our project succeeded and we started to use COALES in practice?

What if someone misused our system?

References

Survey

Acknowledgement

Introduction

Part I - Demographic

Part II - Cancer Knowledge and Experience

Cancer Treatments

Chemotherapy

Chemotherapy and Side Effects

Part III - Communication and Information

Communication with Healthcare Professionals

Information Sources and Clarity

Education and Health Campaigns

Part IV - Social Impact

Cancer, Social Life and Career

Second-hand Impact

Limitations

Conclusions

References