After coding and summarizing the interviews, three themes and 9 subthemes were extracted: (1) stress: psychological stress, physical pain, economic stress, stress caused by changes in the life status and the stress of information overload; (2) coping strategies: measures taken by the survivors themselves; and external help received by the survivors; (3) expectations: expectations for the society and expectations for themselves. Please see the summary of the themes, subthemes and nodes in Additional file 1: Annex 3.
Stress
The stress theme included five subthemes: "psychological stress", " physical pain stress ", "economic stress", " stress caused by the changes in life status " and " stress caused by information overload".
Survivors mentioned 5 nodes in psychological stress: " self-abasement", "fear of disease", "the impact of others' experiences", "impact from the mass media" and "worries about the future of family members".
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i.
Self-abasement
The contents under self-abasement node included "self-abasement caused by the change of appearance"," self-abasement caused by taboo", "alienation from others" and so on. The biggest difference between BCSs and other cancer survivors is that except for breast-conserving surgery, all surgical treatments for breast cancer can cause trauma to the outside shape of the body. The loss of a woman's breast after the surgery can make a huge difference to her appearance. Therefore, most of the BCSs will have a sense of self-abasement due to the change in the appearance.
Now I feel a little strange when I look at myself, I feel like a monster when I see myself in the shower.—1st interview, No.8
In addition to the self-abasement brought by the change in appearance, the more prominent problem was that the BCSs felt self-abased because of their status as "cancer survivors". Because of the fear of being looked at differently or treated unequally by others, survivors chose not to let others know about their illness. Respondents said they were more likely to get along with other patients with the same disease, believing they that had more empathy.
We don’t want others to know about our diseases. If they find out, they'll think you're different from normal people.—1st interview, No.2
No one at my work or in my neighborhood knew I was sick. I don't want it to spread because I feel bad about having this disease.—8th interview, No.5
Nowadays, Chinese people tend to be very scared at the mentioning of cancers. Many survivors were reluctant to let others label them as cancer patients when they learnt about their conditions. At the same time, some respondents worried that others would overstate their illness, which would make survivors more self-abased when they get along with others.
We had a relatively mild cancer, while someone would exaggeratedly say ‘She has cancer. It’s serious.’ 7th interview, No.4
Others said they felt depressed because they were overly concerned by others.
It's just that if you tell someone about your condition and they begin to care about you, you're then in a vulnerable position—5th interview, No.6
The BCSs also believed that a person suffering from the disease might bring bad luck to those in close contact, leading to feelings of self-abasement.
But since I seem to be in such a big place, I keep being afraid of infect others. Although, this disease is not infectious.—5th interview, No.1
In addition to not wanting to let people around them know about their illness, survivors who had the illness and had not left their jobs did not want the organizations where the worked to know about their illness. Except for worrying about how their colleagues would see them, they also worried about the organization in the knowledge of their illness would affect their job.
I don’t want my organization to know about my disease. It’s so embarrassing.—8th interview, No.5
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ii.
Fear of the disease
Some interviewees said that since being diagnosed with cancer and undergoing the surgery, they often worried about the recurrence or metastasis of tumors that had already been removed. The thought put a lot of psychological stress on them, and they might even be afraid to face the results of the examination.
It’s like having a time bomb in you.—2nd interview, No.8
Any discomfort you feel will implicate you in the disease.—3rd interview, No.1
Metastasis and relapse are common among breast cancer patients. There are lots of cases of metastasis and relapse now. It’s terrified to hear about those cases.—4th interview, No.2
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iii.
Impact from the Mass Media
The psychological stress of BCSs can be affected by news reports of celebrity who have the same illness. Media coverage of high-profile BCSs can have an impact on the psychological well-being of BCSs.
Beina Yao (famous Chinese singer), who must be very rich and have better doctors, died of breast cancer eventually, making us worry about ourselves since we don’t have as good access to medical help as the celebrities do.—3rd interview, No.4
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iv.
Impact from Others’ Experience
In the interviews, we found that BCSs' stress was influenced not only by news reports of famous people's illnesses but also by the words and similar experiences of those around them. The progression of others around them had a big impact on them, and the progression of others put a lot of psychological stress on the BCSs. The interviewees said that if they heard that patients around them were getting better, they would also be hopeful about their treatment. But if they heard or saw people around them got worse or died from the same disease, they would immediately wonder if the same tragic outcome would happen to them.
I keep thinking that the same thing would happen to me hearing someone around me have a relapse.—3rd interview, No.4
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xxii.
Worries about the Family Members.
The BCSs worried that their disease would lead to an increased risk of breast cancer for their children in the future, and even worried that such a family history of the disease would be an obstacle to finding a partner for their children.
I have a daughter. I keep warning my daughter about having a disease like me after I got diagnosed. She should start paying attention to her health now by going to the beauty salon and having massages sometimes, keeping the organs healthy and soft.—6th interview, No.4
Any cancer a parent has had can be stressful for a child, and some families just can't accept it, because they know that the disease is hereditary.—8th interview, No.3
Besides, some interviewees said that because of the uncertainty caused by illness, they tended to imagine and to prepare for their death.
I handed over all the money to my husband and told them what I’m worried about if I died before the surgery. I don't know if I'll ever wake up from the anesthesia—2nd interview, No. 6
Respondents said they were often depressed by the complications of breast cancer surgery and the physical pain of long-term drug use during recovery.
Breast cancer surgery is often taken to remove the tumor. The surgical wound is large, and the surgical sequelae might have a huge impact on the patients’ daily life.
It looks like we are as normal as others, but one of our hands is nearly crippled and we can’t lift heavy things for the rest of our life.—3rd interview, No.2
The pain and side effects of taking breast cancer drugs, which require long-term adherence, could be unbearable.
I put on more than 10 g because of the endocrine drugs. I used to be in the bike club and I've been working out. Now I had fatty liver and other diseases from weight gain. There are a lot of other diseases that come with this disease.— 3rd interview, No.2
The arms and legs will get swollen because of the drugs and bring so much pain on cold days and rainy days.— 3rd interview, No.4
Contents covered in this topic were "inadequate health care coverage, costly follow-up" and "inability to continue working due to illness, which affects income".
Respondents reported significant financial stress due to the high cost of surgery and subsequent rehabilitation for cancer treatment. The majority of respondents believed that the current proportion of medical insurance reimbursement was low and had short effectiveness, resulting in the survivors themselves to bear the increased financial burden.
My husband is retired, there is not much salary… so I hope the society can help us more. We are financially limited after all, and are very vulnerable people.—4th interview, No.6
Critical illness insurance usually covers for a year and a half to two years, but I have to take five years of medicine. All payment is out of pocket after the expiry of health insurance, and I have to pay half of my retirement salary for the drug.—3rd interview, No.4
Survivors also mentioned that the disease often made it impossible for them to continue working, adding to economic stress.
It feels like my home had collapsed. I lost my labor and I couldn't go to work now. My kids are still young. I’ve worried enough about the financial burden, and then the doctor told me that I needed 300,000 yuan (for treatment). The economic pressure is too much.—2nd interview, No.7
The BCSs said that their lives had changed since their diagnosis, mainly in terms of changes in family life and social life.
During the interview, the interviewees also mentioned that after their diagnosis, in addition to their life situation had changed, it had also brought a lot of impact on their family members, making them feel depressed.
We used to be able to do everything at home, but now we need someone around us whatever we do. I used to be able to carry everything even the gas stoves, but now my hands get swollen whenever I lift something heavy. Now that my husband has retired, he’s always around me and helps me carry heavy things, which is very inconvenient.—4th interview, No.6
Besides, other people's attitudes toward BCSs limited their social activities, which could put stress on the survivors.
I used to be in the art promotion department, but now they won't let me go, saying that I have to take the medicine, go and see a doctor now and then, or might have a sudden attack during the performance. They just won't let us go there anymore.—1st interview, No.8
In the interviews, survivors mentioned that the society was developing rapidly, therefore information channels and sources were extensive, and information was diverse, while meantime publication platforms of authoritative information were lacking. As a result, the general public had doubts about the authenticity of some information and were not sure whether to accept the information or not. For the BCSs, the confusion was caused by the lack of proper dietary guidance and a plethora of treatment options from which they didn't know how to choose.
Sometimes you don't know what kind of doctor to go to. There are occasions when you go to the original surgeon and he says, "don't come to me, the surgery is done.—1st interview, No.2
Coping strategies
The BCSs also mentioned some coping strategies for managing and adjusting the stress described above, including the subthemes "how to reduce stress on your own" and "getting help from the outside". " Measures taken by oneself " referred to the measures taken by the survivors themselves to cope with the stress and difficulties brought by the disease; "help from the outside" referred to the help which survivors got through the family, society, friends and other external environments in the course of illness.
The topics of measures to cope with stress included "improving cognition about the disease helps relieve stress", " facing treatment positively helps relieve stress ", "developing hobbies helps relieve stress" and "belief helps relieve stress".
All participants in this study were recruited from the Shanghai Cancer Rehabilitation Club, and the majority of the BCSs reported significant improvements in their mood and stress levels compared to those who did not participate in the club. At the club, survivors could take part in a variety of breast cancer-related seminars, patient meetings, and thereby deepen their knowledge of the disease. They also learn more about the knowledge and advice which could help with the treatment and recovery. In addition to alleviating the fear of the disease and relieving the stress of the survivors, the club also holds regular group activities such as dance classes and film appreciations. Survivors can participate in these activities to enrich their lives and relax at the same time. In the course of participating in the activities, survivors can also communicate with other patients. These series of processes are also very helpful to ease the psychological stress of survivors.
The choir in the cancer club holds activities every Saturday. We sing and dance for two hours every week.—7th interview, No.7
Apart from joining clubs, participants also mentioned many other ways of coping with stress, such as traveling, surfing the Internet, listening to the music, listening to the radio, planting, and talking to others.
I always turn on the radio when I’m in a bad mood and listen to it on my own for a while. I will soon feel better.—7th interview, No.2
I talk to my husband every time I feel stressed, and he will talk me through it. I will also participate in some activities and have fun with others. I feel much better having fun with others.—7th interview, No.9
Others said they found peace of mind and improved mood through faith.
I'll go to the temple and pray to the Buddha. I used to go less, but now I go more. It works.—7th interview, No.4
During the interview, the interviewees summarized the help they received after the onset of their illness in three aspects, namely, "family support'', "mutual care among the patients" and "neighborhood and social care". Interviewees said that they had felt the love and care from all walks of life since they became ill. Relatives, friends, neighbors, and others had provided them with a lot of help. Some community organizations had organized support groups to help each other. Some regularly organized group activities for the BCSs to improve their mood, while some community organizations (such as Cancer Rehabilitation Clubs) disseminated knowledge to survivors through lectures, meetings, and other forms. Some non-governmental organizations actively offered condolences and helped cancer survivors in need.
The BCSs said that the help and care of loved ones and friends have helped them relieve stress, reduce self-abasement, relax, move beyond the shadows, as well as move forward with treatment and recovery. Therefore, outside help for BCSs can play a crucial role in coping with stress.
Family members such as my brother and other relatives all came to Shanghai to visit me. They all offer their hands immediately when I’m in need. Family is very important to us.—2nd interview, No.4
Also, the BCS said they felt more connected, more empathetic, and better able to talk to those who were going through the same disease.
Baoshan District is doing great in supporting breast cancer patients. One effort they have made is the club, and the other is that the community leaders often visit and comfort us. They have a monthly event in the auditorium with a lot of people attending it. I think the community and the club have done a really good job.—1st interview, No.4
The interviewees also mentioned that they received a lot of care from the neighborhood committees and the society after the onset of their illness.
The community is still very concerned about us after all. They came every year to console.—6th interview, No.3
We are very unfortunate to have this disease, but the society treats us very well. Everyone cares about us in every aspect, making us feel the warmth from the extended family. We are lucky to have met so many kind-hearted people. The charity foundation also helped me during the last Spring Festival. It makes me feel warm.—2nd interview, No.4
Expectations
The topic of expectation mainly included the contents mentioned by the interviewees during the interview except for stress and countermeasures, including two sub-topics of "expectation for the society" and "expectation for themselves", reflecting the respondents’ expectations and recommendations for the government, the society, welfare associations and other organizations in the fight against illness and stress.
Under the subtheme of "expectation for society", four nodes were included: "expectation for the media", "expectation for anti-cancer organizations", "hope to be treated as normal by people around me", "hope to reform health insurance" and "hope to unify the standard of issuing disability certificate".
The vast majority of the respondents expressed the hope that the media would cover more positive aspects of the anti-cancer campaign and care advice, but less negative news and obscure jargon, so that they could cheer up and optimistically fight the disease.
I don’t think they should report the news of famous people dying of breast cancer, but report more about the supporting activities such as cancer clubs and other inspiring news. We can only get frightened by hearing the bad news. It would be better to broadcast how many years someone has lived after treatment.—3rd interview, No.1
Some BCSs had made suggestions to the cancer rehabilitation clubs, hoping to improve the way they register for joining the club, and hoping that the clubs could organize a variety of recreational activities as well as popular science activities related to post-cancer care.
There are so many members in the cancer rehabilitation club now, and it takes a long queue to register. I don't know how many people are in front of me and I might not be in Shanghai when it’s my turn. It takes a long time to get enrolled.—3rd interview, No.4
Some BCSs said they hope to be treated as normal rather than overly concerned.
I don’t want my family members to treat me as a patient and keep asking me what I want to eat, which is kind of pressure to me and kind of annoying. I hope they can treat me as what they did before I got diagnosed, like a normal person. I can eat whatever they cook. Asking me and caring about me every day will only put more pressure on me instead.—3rd interview, No.4
During the interviews, many survivors also mentioned their expectations regarding the disability certificate. Survivors hoped to be able to unify the criteria for issuing the disability certificate. They believed that their arms were prone to edema, pain, and inability to do heavy work after breast cancer surgery. It looked intact on the outside, but it’s a kind of disability, so they hoped to benefit from the welfare policy for the disabled.
We should have a disability certificate. However, some places admit this but some places do not. There are places where people who operate later have a disability certificate. When I went to apply for it, the staff said we are not eligible for the disability certificate in our district.—3rd interview, No.4
On the other hand, survivors generally reported that the current medical insurance for radical illnesses had short effectiveness and was inconsistent in standards in different areas. They hoped the health care system and medical insurance could be reformed.
It’s still the medical insurance that worries us. We have to pay for the medications by ourselves since they are not covered by the insurance.—3rd interview, No.1
The duration of medical insurance for serious diseases, especially western medicine, is only two years, which is too short. For example, if I take the endocrine medicine, I have to pay more than 1,300 yuan a month, and I have to take other western medicines as well. After the time limit for medical insurance expires, the financial burden is very heavy. Can the time limit of medical insurance be extended a little?—5th interview, No.4
During the interview, the interviewees also had great expectations for themselves. The interviewees hoped that in the future they could adjust their mentality to face the disease positively.
Keep yourself in a good mood and try not to think about being sick.—8th interview, No.1
Be happy every day and try not to get too tired.—8th interview, No.5
Some survivors also said they would try to repay their families for their care and to adjust to their best condition.
Just because everyone (the family members) cares about us, we have to repay them. We should not be in a bad mood but try to be happy.—2nd interview, No.5
The BCSs also expressed their desire to pass on their experience of fighting cancer to new patients and to help others.
It's very rewarding to help a new patient, including passing on some experience on things like chemotherapy. For example, I lost my hair during chemotherapy. A previous patient told me to shave my hair and keep the roots in my scalp, otherwise, I would lose all my hair. Later, I passed this on to a later patient and she did what I told her.—2nd interview, No.4
It's time to encourage people who are going through chemotherapy, because we've come a long way from chemotherapy, and it's not easy… I think chemotherapy is very painful.—2nd interview, No.1