The Experience of Adolescents and Young Adults in Their Cancer Journeys in Japan: I Try to Move Forward With Feeling That I Would Be Okay With “My Cancer”

Abstract

Purpose:

A cancer diagnosis can greatly affect adolescents and young adults (AYAs), especially those in their late teens and early twenties, who might have their special needs. This study aimed to understand the experiences of the AYAs who were diagnosed between 15 and 24 years of age in Japan, thinking about the care guide supporting them, from the time of their cancer diagnosis through the rest of their lives.

Methods:

Data were collected using semi-structured interviews, which were audio recorded and transcribed verbatim. Qualitative analysis of the transcripts was used to categorize these into themes for comprehensive interpretation.

Results:

Twenty AYAs participated; they were diagnosed between the ages 15 and 23 and were 19–29 years old at the time of the interview. In total, 14 core categories were identified, consisting of three themes (1) There is a feeling of distance between the cancer and me, (2) I face “my cancer” in my way, and (3) I feel that I would be okay with “my cancer.”

Conclusions:

AYAs had their way of dealing with cancer while experiencing a distant feeling between themselves and the presence of the disease during their cancer journey. Although the process was not simple, they tried to live their lives in their own way, believing that they would be okay. Nurses must respect and understand that AYAs have a process of facing their own cancer with time and watch over AYAs’ experiences to appropriately support them to successfully proceed further.

Background

Survival rates and response to cancer treatment that develop in the age group of adolescents and young adults(AYAs) are distinctive.^1–4 This generation faces psychological and social consequences while receiving treatment after cancer diagnosis.^5–10 It has recently become clear that there are issues related to their unmet needs.^11–13

In 2015, the Japanese government indicated the need for an unprecedented survey of the medical care and research for the AYA generation,¹⁴ which is defined as those between the age of 15 and 39, comprising about 2.5%–3% of all cancer patients.^15,16 Subsequently, the Cancer Control Promotion Council stated new strategies for AYAs in its “Phase Three Basic Plan to Promote the Cancer Control Program”¹⁷ in 2018. The number of patients aged 15–24 years per hospital was remarkably small,¹⁸ so it is anticipated that medical professionals have little experience working with cancer patients from this generation, predicting a challenge in caring for them.¹⁹ It was also reported that there were differences between the treatment and care systems of cancer patients under and those over the age of 25.²⁰

Recently, Arnett²¹ has described the idea of “emerging adulthood” as a period of preparation before adulthood. In the process of social independence, members of that age group gain confidence in themselves and imagine their dreams and hopes for the future²² while experiencing new life events. In Japan, the length of hospitalization for cancer treatment is longer than that in Europe and the United States.^23,24 It is predicted that the sense of isolation and its impact on the patient’s life during hospitalization may be quite significant. Marshall²⁵ has described the experience of survivors diagnosed with cancer during this period as an uncertain situation in which the dual experiences of “adolescence” and “cancer” cause them to deviate from the norms of daily life and wander the boundaries. In addition, it has been reported that their needs change throughout their cancer experience and trajectory^26,27 as they try to maintain a sense of self-control while facing the challenges associated with the effects of the disease.²⁸ Furthermore, it has been said that AYAs have challenges after treatment,²⁹ so they need psychosocial support.^{1,6,8,12,13,30}

This study’s purpose is to understand the experiences of the cancer journey of AYAs who are in their late teens and early twenties. We believe that understanding this experience from the time of diagnosis to the rest of their lives is a crucial perspective to consider when providing care for this generation.

Methods

Participants

Participants included those who were diagnosed with cancer between the ages of 15 and 24 after 2015. Eligibility requirements were as follows: if they (1) had been hospitalized for cancer treatment, (2) were not hospitalized at the time of the study, (3) were under 30 years of age, (4) understood their own diagnosis and treatment, and (5) could talk about their experience. Those who were judged by their doctors to be difficult and those in the terminal stages of cancer were excluded.

Setting and recruitment

Participants were recruited using a convenience sampling method. We contacted six institutions; three university hospitals, two cancer center, one general hospital, which have expensive experience in care and follow-up of AYAs, and also one large peer support group of AYA operating on a national scale. After institutional review boards affiliated with the author and each sample-recruiting institution, the contact person of each institution guided the participants and extended the invitation of participation. Those interested in the study contacted the first author via telephone or email, following which the latter explained the study in detail and scheduled an interview. All procedures were approved by the institutional review boards of Kyoto University and each sample-recruiting institution.

Data collection

A descriptive qualitative methodology was undertaken to gain in-depth and unique stories of the experiences of AYAs with cancer. To ensure the rigor and transparency of the qualitative methods, we used the Consolidated Criteria for Reporting Qualitative Research checklist.³¹ The data were collected from March 2021 to March 2022. Participants were allowed to choose the interview method: in person or over the internet (using Zoom). Before the interviews, they were asked to fill out a demographic fact sheet. Face-to-face interviews were conducted for each participant, using a semi-structured interview guide (Table 1) which was developed to obtain narratives of participants’ experiences. All interviews were conducted by the first author. The participants were encouraged to talk freely, and based on their episodes, the author asked them to describe the situation in more detail and about their feelings and the reason why they felt that way at that time. All interviews were audio recorded in Japanese with the consent of participants. The participants were given gift cards as compensation for their time and involvement in this study.

Table 1.

Sample Interview Questions

Introductory questions	Can you talk about the process of your diagnosis?
	(Based on participants’ episode)
	Could you tell me how you feel (think)? Why do you feel (think) like that?
Question depending on cancer progress of participants	Can you talk about the situation of your diagnosis?
Question depending on cancer progress of participants	Can you talk about when your treatment started?
	Can you talk about the days close to your discharge from hospital?
	Could you tell about some episodes during your treatment that impressed you at that time?
	Can you talk about your life after your discharge from the hospital or after the end of your treatment?
	Can you talk about your present life?
	Can you talk about any thoughts you have about the future?
	Do you have anything that you feel you have lost since your cancer diagnosis?
Question throughout the progress of cancer	What was important to you at that time?
	What helped you at the time?
Question based on the episode	Could you tell how you feel or think or do?
	Why do you feel or think or do so?

Data analysis

The interviews were transcribed verbatim, and transcripts were reviewed repeatedly and coded based on the meaning unit that expresses feelings, perceptions, and values for participants’ lives after being diagnosed with cancer. Using an inductive approach, identical and similar codes were combined into the same categories temporarily. The authors discussed the process of reconsidering and reconfirming the coding and categorization periodically and repeated this by returning to the narrative when there was no consistent interpretation during the process. After all categorizations were complete, they led to the determination of certain themes as comprehensive interpretations of AYAs’ cancer experience.

Results

Participant characteristics

Twenty participants met the eligibility criteria and were approved for the study. The average age was 23.1 years (range: 19–29) and the average time since their first diagnosis was 52 months (range: 15–70). No one was hospitalized in the special unit for AYAs; 9 were in the pediatric ward and 11 were in the adult ward. Participants’ demographics are presented in Table 2. Each participant had one interview, with an average duration of 87.45 minutes (range: 58–104).

Table 2.

Demographic and Clinical Characteristics of Participants

Categories	N (%)	Mean	Range
Age at the diagnosis		18.7	15–23
15 − 20 years	13 (65.0)
20–24 years	7 (35.0)
Social status at the diagnosis
Student	15 (75.0)
Student who failed or missed the entrance exam	2 (10.0)
Employed	3 (15.0)
Age at the interview		23.1	19–29
19–20 years	6 (30.0)
21–24 years	7 (35.0)
25–29 years	7 (35.0)
Social status at the interview
Student	9 (45.0)
Employed	8 (40.0)
Unemployed	3 (15.0)
Had spouse at the interview
Yes	1 (5.0)
Duration since the first diagnosis		4 years 4 months	1 year 3 months to 6 years 10 months
1–3 years	4 (20.0)
3–5 years	8 (40.0)
5–7 years	8 (40.0)
Gender
Male	13 (65.0)
Female	7 (35.0)
Diagnosis
Leukemia	9 (45.0)
Soft tissue sarcoma	5 (25.0)
Bone tumor	3 (15.0)
Brain tumor	2 (10.0)
Cervical cancer	1 (5.0)
Type of treatment
Chemotherapy	19 (95.0)
Operation	10 (50.0)
Radiation	7 (35.0)
Hematopoietic stem cell transplant	2 (10.0)
Duration of hospital stay due to treatment		10 months	1 m–1 y 11 months
1–6 months	5 (25.0)
6–12 months	7 (35.0)
>1 years	8 (40.0)
Cancer recurrence
Yes	4 (20.0)
Had late effect
Yes	3 (15.0)

AYAs’ experience throughout the cancer journey

Fourteen core categories were identified as AYAs’ experiences after their cancer diagnosis. These categories consisted of three themes: (a) There is a feeling of distance between the cancer and me, (b) I face “my cancer” in my way, and (c) I feel that I would be okay with “my cancer” (Fig. 1).

FIG. 1.

AYAs’ experience throughout the cancer journey. AYA’s, adolescents and young adults.

Theme 1: There is a feeling of distance between the cancer and me

AYAs felt like there was a distance between their cancer and themselves from the time of their diagnosis to the present; sometimes, their cancer seemed far away, and sometimes close (Table 3).

Table 3.

Theme 1: There is a Feeling of Distance Between the Cancer and Me

Categories	Example quotes
I cannot believe that I have cancer	I was given all kinds of explanations, one after the other, and to be honest, I wasn’t sure if that was happening to me or not. (Q, 22 years)
	I started chemotherapy right after that (treatment explanation), so I didn’t have much time to think about it. (R, 23 years)
Cancer feels threatening to me	At first, I thought I would be able to leave the hospital right away so I thought it would be easy, but then I was told it would take a year or so and my life collapsed… It was like everything that I had envisioned collapsed. (S, 18 years)
	When I was told the name of the disease, I became more concerned about whether I would really survive… I did some research on my own on the day I was diagnosed with leukemia. The survival rate was 30%, and I thought to myself, “This is not good,” and I also thought, “Well, I’ve got to prepare for death.” (O, 21 years)
Cancer is gradually becoming mine	As I got used to the hospital and treatment procedures, I became more and more anxious about my real life, school, and so on. (F, 17 years)
	The number of days of administration is shorter in the second treatment than in the first one, so I can prepare for it… I think the fact that I am prepared to endure such heavy situation is one of the reasons why I think it is not so tough.
	I had never thrown up, so I didn’t really understand what I was told before the first treatment; but after a while, I learned what it was like, and I got used to throwing up. (K, 17 years)
I am lost in “my cancer”	Under the circumstances of suffering from chemotherapy, there were times when I thought that even if I could not walk anymore, so I would be fine living in a wheelchair for now… I felt like I was the only one in the hospital, so I felt like my mind was getting more and more confined. (R, 23 years)
	I was physically and mentally weak. I felt ashamed of myself for not being able to walk, and I was frustrated so it was a little tough mentally. (E, 17 years)
	I was told that the tumor had become so small that there was almost no cancer left in my body, but there might be some cancer cells left, and so I was told that I was doing this now for the sake of those cells; but I did not understand what the goal was. I was in the same cycle again, and even though my hair was gradually coming back, it was falling off again… Again, I was having a hard time, burdening my parents, and feeling a little down mentally. (Q, 22 years)
	If I still had leukemia cells, or if I had leukemia and my body was feeling pretty bad, I probably would have had to take the treatment, and I probably should have taken it; but my body was feeling really good then, and I didn’t want to take the treatment I was having at that time, and so I wanted to quit. (B, 22 years)
I feel free from “my cancer”	I could finally see the goal, I mean, I could finally feel it, and I was so happy… I could leave the hospital, and I could finally live a normal life with everyone. (E, 17 years)
	I thought it was finally over… I thought I was free… I think my freedom was limited. Yes, there was that sense of freedom…. (N, 20 years)
I cannot catch up with my life right away	I could not walk completely, and I had to use a crutch, and I had to wear a hat because I did not have hair… So, when I went to school and was seen by many people, it was a little tough. (E, 17 years)
	When I was in the hospital, I felt muscle weakness tremendously… When I climbed the stairs, I could feel extreme muscle weakness… When I returned, I was a senior in the university, and I had to start looking for a job. I also had to earn my credits. And then there was the graduation thesis. When I had to do all three in one year, it was very difficult to do them all simultaneously after returning to the university. (O, 21 years)
I am still driven by “my cancer”	I would like to go out more, but I had to get treatment for my kidney once a month … when it comes to taking life a step further, I had to put the brakes on it. I wanted to get married and have children too… I was supposed to have a normal, really just a normal life… I cannot really think about the future. (A, 23 years)
	I became a little more thoughtful when I played, like I had to limit myself. I would think, “If I play any more today, will my body be too tired tomorrow?” I sometimes can’t enjoy myself from the bottom of my heart anymore. (F, 17 years)
	At the time I decided to get married, I talked about my illness. I also wanted to have children… My parents told their parents that I couldn’t guarantee that, too. Well, I didn’t want anything to happen to them later, so my parents told his parents and got their approval… I’m a normal person, but I haven’t fully become normal yet. (S, 18 years)
	I don’t have much hope for the future. I have been quite disturbed by my cancer (laugh)… I don’t know if I should not ask for too much. (O, 21 years)
“My cancer” gifted me something special	I realized that I usually received so much support from the people in my life after being diagnosed with cancer … and after all, I also came to know how thankful I am for my daily life. (E, 17 years)
	I am grateful to them for helping me recover this far, as everyone worked hard for me… I feel that my body that has been saved do not just belong to me. I think my life that was saved, and of course I felt that I could not give up so easily. (T, 18 years)

Before AYAs were diagnosed with cancer, they thought that nothing was seriously wrong even if they had unusual symptoms. They avoided consulting a doctor because of their busy schedules. Even after they were diagnosed, they did not feel that it was happening to them but were afraid and confused about their illness and impending cancer treatment, which led to worrying about their future.

For most participants, the cancer treatment started soon after their diagnosis while they were still ignorant about their cancer. However, as the treatment progressed, they began noticing and experiencing side effects and certainly began to realize that they had cancer. After this recognition, they were sometimes confused, anxious, and uncertain. It was difficult for them to feel like themselves because they felt desperate; sometimes they felt lonely during hospitalization and wished they had a peer who could understand them.

Toward the end of treatment and hospitalization, AYAs were delighted at the prospect of discharge and the feeling of freedom from their cancer and anticipated returning to their normal lives. However, AYAs could not do as much as they wanted to because of their declining physical strength owing to their treatment and long hospitalization, thus feeling different from their peers. They felt that the cancer was still affecting them and realized that they would not be able to return to their normal lives right away.

Even as AYAs resumed socialization, they felt that the presence of cancer affected their lives. One such concern was about recurrence of the disease and complications. They also felt like they would not be able to resume their lifestyle as they had previously imagined or that there were no good prospects in their future because of the cancer. Concurrently, AYAs felt that the cancer had brought something meaningful to them and, hence, there were positive aspects of the disease.

Theme 2: I face “my cancer” in my way

AYAs always had a way of dealing with cancer regardless of how they felt about the distance between their illness and themselves (Table 4). Even though AYAs felt far away from cancer at the time of the diagnosis, they felt that they had to undergo treatment to survive and return to their normal lives. As AYAs became more aware that they had cancer and grew accustomed to their treatment, they began to cope in their own ways to ensure a positive outcome. Even if they felt pain because of the side effects of treatment, they endured the symptoms. They were motivated to complete their treatment and also thought to do their best to overcome the disease for the sake of their friends, parents, and others who supported them. They recognized that their priority was to face and receive the treatment at hand and they tried to believe in a positive outcome and to have optimistic thoughts and attitude.

Table 4.

Theme 2: I Face “My Cancer” in My Way

Categories	Example quotes
I have no choice but to get cancer treatment	I honestly do not understand it because it is so difficult. I did not know anything about medicine… I mean, I had no choice but to do it in order not to die (laughs) … well … it is a matter of life, you know … so I guess I thought I had to face it. (D, 21 years)
	I was so worried about the future that I probably completely blanked out and cried, but I thought I had to get better, so I followed the doctor’s advice after that. (H, 15 years)
	If I die here, you know, I only lived a little over 20 years… I would like to get married in the future. (O, 21 years)
I try to face “my caner”	I really wanted to finish what was in front of me as soon as possible and get back to work. (S, 18 years)
	I’m just going to keep working hard for eight months…
	I thought after eight months, I’d be finally able to get out of the hospital. (E, 17 years)
	After the first induction therapy was over, I realized that it was important to eat anyway, because if I did not eat, I would lose my energy … and then I would fall into a worse situation. I was conscious of this and tried to eat whatever I could. (O, 21 years)
I want to live my life on my terms	I am trying not to make myself sick … my goal is to live a long life. I do not want to get sick anymore… My body has been damaged by treatment, so when I think about how long I could live with my body; if I do anything unnecessary, I will never be able to live as long as I want. So, I am always thinking about how I have to do good things, and not bad things. (C, 22 years)
	Since I became ill, I have been trying to do what I want to do when I can. Before I got sick, I was able to do things whenever I wanted, and I took it for granted; but since I got sick, I have been thinking that you never know when something might happen. (S, 18 years)
	The things I value most … well, I think it is to try everything … to try without regrets, or … to try anyway. (P, 15 years)

Although AYAs occasionally felt the presence of cancer, they had the desire or hope to be themselves. Most AYAs hoped to live without any relation to their illnesses, and some cared for their own health and managed the physical conditions. Some thought that they would like to live without making their disease something special, whereas some thought that they would like to make use of their experiences and live a life without regrets.

Theme 3: I feel that I would be okay with “my cancer”

Throughout the process of their cancer journey, AYAs had the feeling that they would be okay (Table 5). When they were diagnosed unexpectedly, they thought that their cancer would eventually be cured, with or without reason. Most of them were not worried about it, even though they could not understand their treatment. AYAs who could spend time with other patients of the same age felt their hospitalization enjoyable and being supported by the presence of their peers. Only one joined peer support group during hospitalization and seven AYAs began interacting after discharge because they did not have information or were not ready to attend the group.

Table 5.

Theme 3: I Feel That I Would Be Okay With My Cancer

Categories	Example quotes
I assume I will be okay	I did not know what it was, but I just thought I would casually do my best … it was clear what I was going to do, so it is like I did not have any doubts. I had a very positive feeling that all I had to do was do it. (D, 21 years)
	The elderly are dying of cancer; but the younger people, well, we could still be alive, somehow, and I think I could make it. (B, 22 years)
I am okay with peers who can speak the same language	I really enjoyed playing with them every day, so staying in the hospital did not bother me … I think that because we had a similar disease, we could understand each other; even if we did not put our thoughts into words, we could communicate with each other. (I, 18 years)
I am and would be okay even though I had cancer	I think it may have affected my career path, but I am glad that I was cured, so I do not really feel that I lost anything … I think that if I feel any discomfort in my body, I should see a doctor, even if it is just a little discomfort … but now the progress is good … so I might be feeling too secure a little bit … I know this is not without the risk of recurrence… I do not have any physical problems, and even though I have scars from the surgery, they are mostly hidden by my clothes, so I do not think it will affect my employment. (N, 20 years)
	Sometimes I think of being in the hospital, but … I don’t know how to say it … but I’ve come to terms with the fact that I had cancer. (P, 16 years)

Most AYAs felt that they were the same and no different from their friends today as they were before they had cancer. They cared about their health but also thought that their cancer would be okay.

Discussion

In our study, we found that AYAs, who received a cancer diagnosis in their late teens or early twenties, felt a distance between themselves and their cancer, and that although the meaning of the presence of cancer in their lives varied over time, they had their own way of dealing with the cancer and were trying to proceed further. However, the process was difficult as they were trying to move forward toward their own goals and hopes while maintaining a balance between confusion and loneliness and feeling that they were okay.

For AYAs, the treatment started right after the cancer diagnosis, and it might have been too sudden for them to recognize that their illness was real, thus it might be difficult for them to catch up. AYAs might think that they had no choice but to get treatment as a coping mechanism,³² and this allowed them to focus on not wanting to die and to be cured, rather than to understand the situation well enough to make a choice. It is also possible that the shock of the cancer diagnosis prevented them from keeping up with reality.²⁷ The fact that it was difficult for AYAs to realize that they had cancer was similar to Pearce’s study.³³ However, once AYAs came to realize that cancer was their own matter, they began to face it. This may be owing to the fact that the existence of cancer has changed from a formless threat to something that can be understood³⁴ through their actual experiences.

Regardless of if sometimes their cancer threatened them and they lost a sense of self, AYAs tried to maintain a positive attitude and not be pessimistic to give this their best shot. AYAs might have developed a strategy to maintain a positive attitude³⁵ by restructuring their cognition to focus on the present rather than worrying about the future; this was similar to the Bennett’s report.³⁶ This positive attitude may be the avoidance of the negative situation they face.

Having a sense of “I am okay” may also support their negative situation and is an important coping mechanism when facing treatment with some degree of hope. The sense of “I am okay” may be influenced by their self-esteem³⁷ or self-centeredness. It is also reported that it is difficult for young people with cancer to articulate the numerous obstacles they face and those around them may not understand what is happening to them; worrying what those around them think results in them controlling their feelings and taking positive steps to avoid feeling depressed.³⁸ In our study, AYAs experienced side effects but tolerated the symptoms as something that would pass; hence, they rarely talked about their suffering with their health care providers. AYAs might hesitate to ask health care professionals or feel ashamed to express their feelings and symptoms. We need to respect that AYAs have their own way of facing these aspects by trying to avoid the negative. However, we also have to understand that they may feel desperate and lonely; they are on the edge of spending life under medical treatment. As a result of hospitalization being long in duration in Japan,^23,24 comprehensive psychosocial support system for AYAs has just started in some institution.³⁹ It is urgent to build a support system that is needed to enable AYAs to express themselves and not to suffer from a sense of isolation.

As in the previous report,^36,40 the experience of cancer, which can be life-threatening, defines their own quality of life. They discover new goals or hopes for the future and also try to live well. Moreover, it is reported that there were some survivors who thought that they had to remain positive and felt more pressure to live as a cancer survivor.⁴¹ In our study, AYAs had the anxiety of returning to real life and also the frustration of not being able to get back to normal life right away. It has been reported that it is difficult for them to share this feeling with peers other than cancer patients of the same generation.⁴² We believe that participation in peer support groups is useful; however, interactions with peers could be stressful for some AYA patients, as they might feel guilty owing to comparison with other people.⁴³ Hence, it is crucial to consider providing them with information about the peer group in a way that they prefer,^44,45 creating a comfortable environment for them, both during hospitalization and after discharge.

The fact that they were proceeding forward by living well in their own way with believing that they would be okay can be seen as a positive coping mechanism. However, health providers need to understand that there is the possibility that AYAs are under pressure to live like this and their coping mechanism could be based on loneliness. It has been reported that AYAs often make decisions about receiving treatment in collaboration with their parents and health care providers,³⁶ and also that teenage patients feel secure and trust that their parents know them well.⁴⁶ Furthermore, their brains may still have difficulty processing the complex information.⁴⁷ Most of the participants in our study had not yet reached the age of adulthood and may have faced the treatment with the hope that their parents would understand, even if they did not. It is also necessary to respect their own values and to share these without misunderstanding whether they have captured the correct information about their physical situations and the effects by collaborating with their parents.

Our study has some limitations. The participants were those who expressed interest in telling their stories. Hence, there is a possibility that the experiences of AYAs who did not participate may be different. However, our results are not extremely biased because the narratives were obtained from AYAs who received treatment at multiple facilities in Japan. However, this survey was not a prospective one, but rather a reflection of AYAs’ experiences; hence, there might be certain limitations in recalling their experiences over time.

In addition, most of the participants in our study were interviewed within 1–5 years after treatment, except one with obvious complications. This may depict fewer expressions of negative aspects of their cancer experience. Because more than 5 years after treatment, AYAs’ concerns about their disease and complications may have changed with altering life events. Therefore, it is important to obtain long-term information on how AYAs’ perception of the presence of cancer and the way of dealing with it changes their future.

Conclusion

AYA cancer patients in their emerging adulthood tried living their lives while feeling the presence of their cancer and tried to control themselves and proceed further in their chosen direction trying to withhold stress by feeling, “I am okay.” The AYA generation is constantly “living on the edge.” It is important for nurses to understand that AYAs have a process of facing their own cancer as time goes by, and they must monitor whether they are proceeding forward with the belief that they are doing okay to provide them appropriate support.

Footnotes

Acknowledgments

The authors gratefully appreciate the participants for their study, and also the peer support group and the institution that referred participants to them.

Authors’ Contributions

N.T.: Led the conceptualization, data analysis, and interpretation writing—drafting the article. M.M.: Supervised the entire research process. All authors approved the final version of the article.

Author Disclosure Statement

No competing financial interests were declared.

Funding Information

No funding was received for this article.

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