Perceptions on cause of breast cancer and disclosure of breast cancer diagnosis.

All women experienced breast cancer diagnosis as a very traumatic experience and the word cancer carried such weight that it is not or hardly pronounced. Some women mentioned how breast cancer is viewed in their country of origin; it is the unnamed disease for which there is hardly any treatment. Four women talked about having breast cancer in their country of origin: One of the Surinamese women described cancer as a non-identifiable, bad disease, if you have it you will die. The Sudanese woman mentioned that in her country of origin the word cancer is not pronounced, a doctor will usually not dare to tell the diagnosis to the patient. In Kurdistan, the word cancer is not mentioned because people cannot or do not want to spend money on the treatment of cancer, because the loss of a breast due to treatment for breast cancer is unacceptable. Furthermore, few women can afford the treatment. One of the women from Turkey described that in a less cosmopolitan and more conservative area than Istanbul, cancer is still a taboo. These women were grateful they lived in the Netherlands and could be treated here.

Most of the women explained that their country of origin, their culture, and religion, shaped how they dealt with the diagnosis of breast cancer.

The majority of the women were religious and religion is an important part of their daily life:

‘Faith is a way of life, not only at home, you confess it everywhere. From the moment you wake up you already make a plea to Allah to thank him for waking you up again, and that goes on all day long’ (Moroccan and Muslim woman, 36 y)

Many of the religious women experienced the cause of breast cancer as something that you cannot do anything about, as this is the will of God. This shaped their perspective on the causes of breast cancer:

'Everything is just for nothing; how healthy you live. I have never smoked, always exercise, always eat healthy, not too much stress…yet breast cancer. If you are unlucky in your life or it is in your destiny you get it, you will not prevent it. If God permits, then you get it, and nobody can prevent it, not even the doctors. And if God gives you power or wants you to recover, he always has his reasons, then you get it' (Turkish and Muslim woman, 48 y)

‘You can't ask why you get breast cancer, that is as being against God’ (Turkish and Muslim woman, 49 y)

Many women struggled with the intentions of God; breast cancer as a test, a punishment:

‘Maybe I am punished, maybe I did something in my life… but now I took care of my father in law and my own father and mother, I did a lot of good things’ (Surinamese and Hindu woman, 56 y)

Despite the fact that women experienced breast cancer as a test or a punishment, they believed faith gave them strength and a second chance to come closer to God:

‘I have not been to Mecca, no Quran reading, I am not afraid to die, but I am not yet ready to die. God gave me the strength to keep me going, I am much more aware of faith, praying more, going to wear a headscarf…’ (Turkish and Muslim woman, 33 y)

A minority of the women perceived breast cancer as a result of a polluted environment, eating processed and unhealthy foods, stress, not giving breastfeeding, not having kids, their genetic makeup and also ‘bad luck’:

‘We’re just not living in a society where everything is healthy and natural. So if you think of it, everyone can get it (breast cancer)’ (Turkish and Muslim woman, 40 y)

‘It is genetically in our family, my mother had it, my sister has it, so half of us will get it. Only Allah knew whether I would get it or not’ (Moroccan and Muslim woman, 35 y)

All women, whether religious or not, immediately thought about dying from breast cancer and not being able to care for their children:

‘Cancer is death’ (Turkish and Muslim woman, 49 y)

‘I am not afraid to die, but my children… That hurts, why must I leave, …. afraid of what will happen, my job is not over yet’ (Syrian woman, 52 y, Christian)

Respondents’ needs and recommendations.

Women described how they began to think differently during and after treatment and how that helped them. One of them formulated it as follows:

‘We do not want to know….[..] … in my community, it is still a taboo, breast cancer as an ordeal of Allah. . . . I was a bad person. Now I can tell you these were wrong thoughts. I think it would help some women if it is more open to discussion. There is need to talk about it…’. (Moroccan and Muslim woman, 36 y)

Body weight.

Before diagnosis, women thought very differently about the importance of maintaining a healthy body weight. Some women did not worry about their weight:

‘I was not really thinking about it. I am always like this… my weight is always up and down. Because I can't keep my hands off yes from the snacking and sweets and I have no regularity in my day…’ (Turkish woman, 41 y, BMI >25)

‘Perhaps because I come from Suriname and I know what hunger …. uuuh if you are hungry, and it is not there and you come from a family of 10 or 12, then you have to ensure that you get it. That remains your whole life.’ (Surinamese woman, 57 y, BMI 30,8)

While others found it important to watch their weight:

‘I slimmed last year after my third pregnancy to get back to my weight. Yes, my mother thinks that the disease is a result of slimming… I said no mom, everybody is slimming… No, she said, you should not slim you know… I get every time a dressing down from my mother’. (Turkish woman, 40 y, BMI 23,6)

During treatment many women gained weight because they followed the doctor's advice to eat more:

‘The oncologist had said to me… at the first time, we were talking about food, go for good food, eat a lot because you need it. You have to get stronger, because it is just heavy to cope with the next chemo, or it will be postponed. So, uh, well I've taken his advice. I went for the burgers and the chocolate…’ (Moroccan woman, 36 y, gained 10 kg weight)

And most of the women were offered help in cooking, sometimes by their husband but mostly by family members as part of their culture to take care of each other. They prepared favorite foods for them:

‘It was difficult for me to eat… but my family brought all that food, all my favorites…. So, I felt obliged to eat all that food together with them….’ (Syrian woman, 52 y)

Some other women experienced enormous weight loss during chemotherapy:

‘At first, I lost 14 kg during chemotherapy, could barely eat, just drank a lot of water. I received tube feeding from the fourth cycle’. (Surinamese woman, 57 y)

and also, after chemotherapy: as the same woman indicated:

‘Now I started with normal food but my problems are only getting bigger…. I am voracious. I have already gained 12 kg in two weeks. A few minutes after a meal I am hungry again. Sometimes I stand in front of the fridge to see what else can I eat, it is so bad. So, I have to pay attention but I don’t know how to stop…’

After chemotherapy most of the women still struggled with their weight, some until up to three years after chemotherapy as these Turkish women indicated:

‘I really feel like I'm bloated, like a balloon. I have to replace my whole wardrobe. You will never be the same as before your illness. I still cannot wear everything because it is too tight’ (Turkish woman, 49 y, gained 15 kg after chemotherapy)

‘And I do not dare to go on a very strict diet because that was not recommended to me by the doctor’ (Turkish woman, 41 y, gained 10 kg after chemotherapy)

‘I did not mind losing weight, because I do not like having too many pounds. So yes, I actually liked that. But now I do not like it so much that I have gained weight’ (Turkish woman, 35 y, lost 4 kg during chemotherapy, gained 6 kg during hormone therapy)

Only two women called in the help of a dietician, one because of extreme weight loss and the other because of extreme weight gain. They both followed their diet strictly:

‘I was happy, I received a dietary scheme and I ate everything that was on that scheme’ (Sudanese woman, 35 y)

Nutrition.

Before diagnosis most women were used to eating a variety of foods, including fruits and vegetables. There were also unhealthy food products in their diets, such as sugary drinks, a lot of red meat and confectionery:

‘I ate a lot of unhealthy food, I realize that now’ (Turkish woman, 53 y)

This Syrian woman found it important to watch her diet already before diagnosis:

‘…and I eat healthy, but little. I don't eat three times a day, but I eat a good sandwich with cheese. I also drink milk, I always eat healthy vegetables and fruit. I don't smoke, I don't drink, and I eat no fat’ (Syrian woman, 52 y)

During chemotherapy the majority of the women mentioned their diet changed due to chemotherapy and lacked variety because of their symptoms:

‘Only spinach with bread. Every day, hot spinach with pepper, my sister-in-law makes the best with homemade bread. That is the only thing I eat. If I ate other things, it brings up again to the mouth, but spinach remains in my belly’ (Moroccan woman, 45 y, gained 20 kg weight during chemotherapy)

Despite bad appetite due to smell and taste problems, some women felt hungry, but the only food they really liked was fatty food:

‘I had such a desire in a noodle snack and asked my friend to bring me five, I ate three, and a croquette, and the doctors were very pleased that I had eaten’. (Turkish woman, 30 y)

Muslim women experienced the Ramadan as an important aspect of their faith. They struggled with their desire to participate in the Ramadan as usual, but they realized children, older adults and the sick are exempt from the Ramadan because of their health. Despite that, they sometimes did have a feeling of guilt:

‘If you are sick, you have to think about your health, think about your body. But now I walk with guilt… because I have always participated in the Ramadan until now, from my twelfth I always did’ (Turkish woman, 48 y)

Doctors and nurses reacted differently on the women’s desire to participate in the Ramadan:

‘I told the doctors that I must, I must adhere to Ramadan and fast, I was used to it from the age of ten, as a little girl. That doctor told me, don’t do it, you just have to eat and you need your medication, it's better for you. I said doctor, listen, if I don’t, then I feel that I betray my faith’ (Moroccan woman, 45 y)

‘I wanted to try Ramadan and if it did not work, I would stop. I could actually get meds and everything through the drip the doctor gave me. And I felt really good, fasting isn’t harmful, it is good for your body, it is purifying for your body’ (Moroccan woman, 36 y)

After treatment a small majority of the women mentioned that they changed their diet, because they became more conscious of their eating habits and tried to decrease the amount of unhealthy foods in their diets:

‘I try not to cook with deep-frozen products or ready-to-serve dinners but I try to make everything fresh by myself. I try… yes, it is not always easy … to eat vegetables and drink organic milk. I am more aware of healthy food now, snacks are really poison for me’. (Moroccan woman, 36 y)

‘I now drink my tea without sugar. I try not to drink soft drinks. I am afraid that the cancer comes back. They say that sugar and long-life food is not good….’. (Turkish woman, 33 y)

But sometimes they experienced problems eating healthy foods during frequent family visits:

“…. all those extra delicacies they made specially for me ….’ (Turkish woman, 48 y)

Physical activity.

Before diagnosis women had different tasks during the day. They sometimes combined household chores, taking care of the children (especially if they were young) with a job. Some of them had also taken on the task of caring for their (sick) parents. About half of the women felt that their days were completely filled with household chores and work:

‘My daily activity consisted of my household chores and working as a cleaning lady, that was exercise for three hours a day, going back and forth, this was enough physical activity for me’ (Turkish woman, 56 y)

A few women mentioned that their lives take place in and around the house. They usually stay at home and only go outside for a reason:

‘I only go outside if I have an appointment or if I want to go shopping’ (Sudanese woman,

35 y)

However, the other half of the women described how they were doing sports next to household chores and raising their children:

‘I went three times a week to the gym. I worked six hours a day. I started at nine and was home at three o’clock, I was constantly busy; I can’t remember that I was at home on an afternoon’ (Turkish woman, 48 y)

During treatment the majority of the women were too tired to be physically active and they were sometimes not even able to go outside due to the tiredness they felt.

‘… so quickly exhausted… I went to visit my father at the end of the street. At one point they brought me by car, I had no strength left, I was just tired and I was literally gasping’ (Moroccan woman, 36 y)

‘I was very weak during chemotherapy, I was just lying on the sofa, I had no energy, no feeling’ (Syrian woman, 52 y)

For some women, the chemotherapy did not have much impact on their physical activity. They felt weak, for a couple of days at the most, but after that, they would continue their normal daily activities.

‘The first day of chemo, I was brought home, the second day I couldn’t cycle, but I was able to continue with my normal daily activities the third day.’ (Portuguese woman, 44y)

‘….at the end of the chemo, my husband drove beside me in the car and I rode the bike. He thought it was really ridiculous that I was still on the bike. I just have to go. I thought it's just not healthy if you get a whole bag of poison through your body and you just sit or lie down. You should move, you just have to stay active, it just has to be, it just has to flow through your body’ (Turkish woman, 54 y)

However, they could not perform intensive physical activities such as working every day or going to the gym three times a week.

Directly after treatment, hardly any of the women were able to be as active as they were before the treatment. Women still suffered from tiredness, fuzziness and they sometimes felt lazy. Some women picked up their normal daily activity routine, but did so in a less intensive manner:

‘After the chemo, I started to go to the gym again, but just two times a week and for half an hour’ (Surinamese woman, 40 y)

For some women, the tiredness gradually diminished. However, for other women, fatigue continues to affect their daily lives and they feel incapable of physical activity:

‘10 years after chemotherapy, I still get tired very quickly. I get tired quickly after physical strain’ (Kurdish woman, 48 y)

Just a few of the women were able to pick up their normal daily activities as previously.

Several women indicated they were confronted with too many emotional events such as the death of a son, spouse, mother or divorce, which meant that physical activity was totally disregarded.

Respondents’ needs and recommendations.

Women indicated that changes in diet and exercise during and after chemotherapy require information:

‘After chemotherapy I learned it is important what I eat and that exercising is very important. People have to know! Probably via church or breast cancer group.’ (Syrian woman, 52 y, Christian)

And, about the importance of taking good care of yourself:

‘If your husband is ill, you just have to take care of him, if your child is ill, your mother…. It is a matter of course in our culture. But if you get sick yourself, you always tried to take care of all the rest. It is a matter of course in our culture… What really helps is to know now that you have to put yourself in first place and to take care of yourself, then you can really take care of others’. (Moroccan and Muslim woman, 36 y)

They indicated the importance of being able to understand and discuss questions and uncertainties:

‘Really, if you want to mean something for migrants and you want to take them seriously, you have to offer them an explanation, this has to do with life and death. And I also notice that the doctors do not tell the whole story to the children who go along as interpreters, because they are afraid to scare these children. And the children do not always want to tell the whole story to their mother. The interpreter is no longer there because of the cutbacks. Those interpreters simply have to return’. (Turkish and Muslim woman, 53 y)

Partner and family.

Social support was identified as important for all women. In particular, many married women experienced their husbands as providing the greatest support. The emotional support of the immediate and extended family during and after the treatment was also a source of hope and help to endure this period.

Partners responded in many different ways to the emotions and needs of their wives suffering with breast cancer: with hope and support, but also with a feeling of helplessness:

'My husband gave me hope, told me that it will be okay, that I must be strong and fight (Turkish woman, 49 y)

‘…. he looked really in your eyes you know. . . . he tried not to make it stand out, but I noticed it as if he is also suffering with me. Well he was very sorry but he tried to support me so much’ (Turkish woman, 40 y)

‘My husband has had a lot of patience with me, I don’t think all Moroccan men are like that. My husband is like that, he does not talk much about it. He leaves it here, put it in his heart. But if he starts talking, then I understand. He says, of course, I want to remove the burden for you, but I cannot’. (Moroccan woman, 45 y)

A few of these women mentioned that breast cancer made them feel vulnerable in their relationships and told their partners they did not have to stay with them:

‘I would understand if he leaves such a sick woman. Have given him the space but he does not want to, how can I leave you if you are sick? But I cannot guarantee that I will be a beautiful woman again in 3 years’. (Syrian woman, 52 y)

‘I have a man, but I do not have children, that is not bad. That will come soon, and if it does not come, then no……yes then I do not mind. My husband can marry other women and have children, then I will get peace of mind’ (Sudanese women, 35 y)

Some women experienced little to no support because partners did not realize the seriousness of the disease or did not understand that women were trying to deal with it in a positive way. Three women were abandoned by their partner because they could no longer talk about cancer and have sex with each other:

‘My husband apparently took it lightly as if I had a flu, did not understand that I had a lot of grief’ (Turkish woman, 33 y)

‘He said to me: I do not understand why you laugh, I do not understand why you have joy in your life, you have cancer, you are dying, do you realize that?’ (Turkish woman, 30 y)

‘He did not expect me to do no cooking anymore and that the house was not always clean, he never did anything. . . . and suddenly he came home with another woman’ (Surinamese woman, 40y).

He left me after 28 years of marriage because I became ill and he could not tolerate my illness. If he had cancer or another disease, I would never do this to him. Never. I would’ve stayed with him with all my love. I would care for him. My heart is broken into a thousand pieces. Even cancer didn’t cause me so much pain; this is the most difficult part.’ (Kurdish woman, 48 y)

Women did not want to burden their families, as they already felt helpless. They said they would hide their feelings from their family and would only take care of themselves after they had fulfilled all their duties towards their husbands and children. That is why some of them sometimes wanted to go to their appointments alone and be sick on their own:

‘I just sent my husband to his work and I only wanted to cry when the children were in school or already in bed’ (Turkish woman, 41 y, 3 kids)

Families were sometimes very shocked about the breast cancer diagnosis and often did not know much about cancer. Women could not talk openly with their family about their illness because cancer is a taboo and some women felt ashamed of having cancer:

‘I had terrible reactions from my family, they were busy but mainly concerned with their own fear and sadness… I thought I am the cancer patient but it is only about you…’ (Turkish woman, 54 y, widow)

‘People did not dare to come because cancer is taboo, even my own family did not want to hear about it’ (Sudanese woman, 35 y)

‘For my family it was new, I was the first in the family to have cancer so they were all very upset and could not talk about it. Much later it turned out that two cousins also had breast cancer, they never told anything about it. They thought that you should be ashamed of having had cancer, and that disappointed me’ (Surinamese woman, 54 y)

Friends.

From their community, women experienced support. Paying visits to people who are ill is a social and religious obligation for Muslims. Many of the Islamic respondents talked about receiving a lot of visitors during their treatment:

‘My sister was here, my neighbours were kind to me, my friends. Everyone was really nice to me. Yes, really… They also came to bring food. They are such lovely people. The whole room was full of flowers. Some people, so many people had come, that really helps you. You are not alone. I had visit, after visit, after visit, and I was really happy with it..’. (Turkish and Muslim woman, 48 y)

Some women experienced the community support negatively:

‘I did not need it. I don’t want to be called or visited. Only my sisters knew, no one else. No, I do not want to be called every time, I'm not waiting for that and that happens when everyone knows’ (Moroccan and Muslim woman 36 y)

Not all of the women had a reliable social network they could depend on, due to emigration to the Netherlands. Most family members, who could provide support, still lived in their home country. Due to the vast distance and the financial costs, these women were not able to receive support from their relatives:

‘My family is in Turkey, luckily, I have my female friends, every day one of them is with me, and I can discuss everything with them … I really had to talk about it’ (Turkish and Muslim woman, 40 y)

In addition, women indicated that female friends had an important role in support:

‘It is easier to share this with female friends than with family’ (Turkish woman, 35 y, no religion)

Fellow patients and consultants.

Women had different opinions about contact with their fellow patients. Some women said they enjoyed the company of their ‘chemo buddies’ and liked exchanging information with them:

‘…. talking with other women with breast cancer was very good, it reduced the pain’ (Sudanese woman, 35 y)

Other women explained they did not like talking with fellow patients nor going to a support group, because these sessions put them in a negative mind-set.

Several women said they came into contact with Mammarosa (a contact group for women with breast cancer women for whom Dutch is not their mother tongue) in various ways:

‘I actually did not have people to share until I ended up at Mammarosa. My family cannot understand me because they have not felt it, they know that I am sick but they cannot feel it for me. Fellow patients can feel the same …’ (Turkish woman, 53 y)

Respondents’ needs and recommendations.

Social support worked in two different ways. As this Turkish woman said: consciously look for the support you need from your family:

‘You really need that support, you know. And I received a lot from my cousins, nephews, my brothers, my sisters, my parents, my friends. Really everyone was with me, it had stimulated me enormously. Because you think of everything, is it okay with me? Do they tell me everything? And if someone from your family says, oh, it's okay, come on, you can do it. You can handle it… you need such people and have to ask for support’. (Turkish woman, 40y)

Or if talking openly about breast cancer within your family is not possible, find other people who can give you what you need, sometimes that is a contact group for women with breast cancer (Mammarosa):

‘Cancer is a taboo in Sudanese culture. Nobody talks about cancer, cancer means death. I only had my husband, who also did not want to talk about it. During chemo I ended up at Mammarosa, met other women and could talk about it; 'What do you have, and what is the side effect? And how can I continue with that? Talking was very good it reduced my fears and I got more rest because I spoke to other women with the same disease at Mammarosa’. (Sudanese woman, 35 y)

The woman who had converted from Christianity to Islam, explained how she learned to invite women for information about breast cancer, as one of the volunteer breast cancer consultants at Mammarosa:

‘We recently gave information about breast cancer in the mosque as volunteers from Mammarosa. The meeting was widely advertised and, in the end, it was a handful of women came. When I talked about breast cancer, they looked at me with so much shock in their eyes. I asked what's going on here? And they said: “… don’t mention the word… because if you hear about it and read and know then you bring it upon yourself ….”. So, if you want to give information about breast cancer you have to place it under the heading of health education for women’. (Portuguese woman, 44y)