Throughout the entire patient journey.

Processes of loss and reinterpretation of the new circumstance. What stands out the most in the process these women go through during the diagnosis and treatment of breast cancer is loss; specifically, the loss of health and a reinterpretation of the new circumstance and the new bodily reality. In the most extreme cases, the loss of health emerges with the fear of death that many women report at the time of diagnosis or during treatment, due to the distress generated. The loss of identity seems to be related to the evolutionary (existential) moment in which the woman is; there are patients who report feelings of disability or loss of attractiveness, or fear of not being able to get pregnant in the future, especially the youngest.

I felt a terrifying fear and thought, “You have cancer you tell yourself, you’re going to die tomorrow.” (Patient 6)

I feel like after the hysterectomy, as a woman, I no longer have anything, only the physical. Sure, I look great, but I tell myself that it’s just a shell, the shell I inhabit, because as a woman, I only have one breast left. (Patient 6)

At that moment, I had to make the decision that I was no longer going to be a mother. (Patient 14)

Personal change. Most of the women report that with the diagnosis of breast cancer, their life stands still and from that point forward, a different journey begins. The sole focus on this journey is the disease and its implications. During all those months, the patients stop working; they focus on their medical treatments, and reflect a lot on their current situation and on life. Most of the participants state, especially those who have already been discharged, that they know themselves better now; they take better care of themselves, and they enjoy their day-to-day and the small moments more, making the most of their time, with more initiatives and fewer trivial complaints.

Clearly, you’re not the same person you were before; I don’t think she’ll ever come back; your mindset changes completely and I have sequelae from all the treatments. (Patient 1)

I re-think wasting energy on lost causes; what’s more, I’ve also learnt to say no. If I’m not in the mood to go somewhere, I just say no. (Patient 7)

I take much more advantage of the present now, because you realize that things can change on any given day. (Patient 3)

Trust and appreciation for their physician. Most of the interviewees stated that they fully trusted the doctors who care for them, without question or objection to the treatments proposed. They reported that, as they go forward, they discuss the tests and treatments that are going to be performed, as well as possible side effects. Several stated that they are unaware of the stage of their cancer; similarly, most also do not know the benefits expressed in X% of the treatments. A few of the participants claimed that they did talk in detail about the different types of treatments with their oncologists, that they had sought another opinion, and one of them even reported having decided to stop chemotherapy, which was very hard for her, given her physician’s insistence that she continue.

The truth is that the oncologist didn’t say much about percentages; what she told me were the steps that I had to take; I thoroughly trusted her and she gave me a lot of peace of mind. (Patient 5)

I told him, “I’m going to do whatever you tell me to.” It never occurred to me to dispute whatever the oncologist might tell me. I was willing to do whatever was needed. (Patient 8)

Most of the women, at some point during the interview, state that they are grateful for the care they received and that, within the seriousness of their situation, there is a treatment for their condition.

I am super grateful for the treatment I’ve received and with the doctors assigned to me. (Patient 2)

I’m very lucky; I’m only on my second line of treatment for metastasis and I’ve got a lot more ahead of me, but I consider myself lucky and I believe things are going very well. (Patient 20)

Role of the woman. We can see that the women adopt a role of care-givers and managers of their surroundings. They worry about the disease negatively affecting the people around them, which is why they make an effort to manage the family’s activity for when they can’t do it and they try to avoid being a physical burden or cause emotional distress to the people around them.

I was very strong; I made everything easy for people, but making it very easy, doesn’t mean that it was easy for me, but that I made it easy for everyone. (Patient 8)

I didn’t want to worry anyone because that’s just the way I am, I push forward and that’s that. (Patient 5)

Support network. In all cases, the family appears to be one of the elements that is most involved in the disease process. Within the family, the partner deserves special mention. The testimonies in this regard reveal a wide spectrum of possibilities that range from the feeling of having had great support to a lack of attention and understanding that, in many situations, causes the relationship to be strained or to end. Friends tend to appear more occasionally.

I can’t complain about my husband; he was up to the challenge, very attentive toward me and he fully understood how I was feeling; I felt very supported. (Patient 14)

We’ve had a period of a lot of arguing; I’ve had to sit down with him and tell him that life had changed for me. (Patient 18)

I had a partner I had lived with for five and a half years and he told me, literally, that he looked at me like a little sister, no longer as a woman, and he left me, and that hurt me tremendously. (Patient 6)

On the other hand, many patients commented on the importance of social media, where they have met people in the same situation as them. They report feeling understood and in good company; likewise, they commented on the importance of being able to share their doubts and get to know about other experiences.

It’s a situation that only someone who has gone through can understand; you can have all the good intentions in the world, but if you haven’t gone through it, you can’t even begin to understand. (Patient 8)

Use of complementary treatments. Most patients follow conventional medical treatment. However, many resort to other disciplines that help them improve their quality-of-life, like dietary changes, getting more exercise than usual, visits to a psychologist or physical therapist, or using other integrative therapies, such as acupuncture, yoga, reiki, flowers of Bach, homeopathy, cannabis, or meditation.

I started to read a whole bunch of books to see what I could do to take care of myself in terms of nutrition and exercise; you consider everything you can do. (Patient 5)

Diagnosis/unmasking.

This phase encompasses the time from when the woman detects some symptom or goes to a check-up until the medical diagnosis is made. For the woman, this is a time of a series of tests and results. We have observed that the procedures, especially the healthcare professionals that deal with the patients, and the timing vary, depending on the medical center where they are being cared for. Emotionally, this is one of the most complicated stages.

Emotional whirlwind. The wait to obtain test results has a huge emotional impact for the women, given that it is a time of great uncertainty and fear.

An entire month with all the anguish of finding out if you have something. (Patient 3)

The worst part is waiting 15 days to find out the magnitude of the tragedy, if it’s throughout your entire body or only in your breast; you go through a brutal emotional whirlwind; the wait is horrible because there’s nothing else you can do, so that anguish that you carry inside is dreadful; it was hell for me. (Patient 10)

Additionally, the interviewees described many other emotions that included fear of death, fear of having no time, feeling of unreality, rage, anger, sadness, avoidance, denial…

The first thing I thought was that I was going to die and that I wouldn’t finish watching my children [grow up]; my father had died of lung cancer 25 years ago. (Patient 9)

My only aim was to get back to normal, as if there were nothing wrong. (Patient 4)

You have a lot of conflicting feelings; you wish this weren’t happening; you want to run away, but you say, “Where am I going to run to?”. (Patient 14)

Impact of medical communication. Several women comment that, when given the diagnosis, they dissociate because of the emotional impact and that they don’t listen to all the information that the medical professional is giving them.

I remember that she talked and talked, but I didn’t know what she was saying until she said, “Isabel, you’re going to be cured, okay?”. (Patient 9)

During the diagnostic testing, the women are highly sensitive to the healthcare professionals’ words and gestures.

I looked at the face of the person who was doing the mammogram and that’s when I started to imagine the worst. (Patient 20)

I say to them, “But, is there a solution to this?”, and they say to me, “Don’t worry, I’m sure there is a solution.” That “sure” is etched in my mind. (Patient 10)

Communication and managing their surroundings. After the diagnosis, the patients feel that they have to tell the people around them about their situation, especially those closest to them, the family. They all agree on how hard it is to share. Normally, the people it’s hardest to tell are their mother and their children. When they do, they try to put the most positive spin on it possible, in an attempt to keep them from worrying.

You no longer think only about yourself, you think, “Good grief, now I’ve got to tell my mother.” It’s hard. (Patient 16)

I wanted to tell my kids the way I say things, always trying to look for the upside, and positive, although it was hard, but, anyway, in the end, it went well. When I finished, my husband told me, “You’ve convinced me that it’s no big deal.” (Patient 9)

I told my son, “Son, don’t cry, your mom’s going to get over this, this is nothing.” (Patient 1)

During this period, the women contemplate how their situation will affect their surroundings and they try to organize it as much as possible.

I devoted myself to planning everything, to organizing what to do with my daughter, and to thinking about work, too, how I had left things at work. (Patient 4)

Surgery/cleaning out the cancer.

Uncertainty and fear. The participants express that before going into surgery, they are told about the kind of procedure that will be done, but that, depending on what they find and the analysis, it may change. In light of this, they exhibit an enormous feeling of uncertainty and fear. In addition, many voice concern about how the surgery will go.

They tell you conservative surgery, but if we open up and see something we didn’t see on the tests, then everything could change. (Patient 10)

Aside from the anesthesia, that I’m terrified of, you spend several hours in surgery and you don’t really know how things will go; when they clean it out, they analyze it, and you go into the operating room and you don’t know what can happen. (Patient 9)

Feeling of loss. Considering that the breast is associated with an intimate, feminine part [of their body], many women experience the operation as a loss. This loss is more acute if the operation is a mastectomy and there is no reconstruction at the same time. The loss also involves a loss of identity, compounded by the side effects of chemotherapy, such as hair loss. The interviewees who had undergone mastectomy say that following surgery, when the bandaging is removed and the scar is revealed, is one of the most critical moments, which is why they express difficulty in managing it and appreciate the caring assistance from the professionals.

It is identification with yourself, you know, it’s what you’ve seen in the mirror, what you think you’re like and, suddenly, you’re no longer like that; there’s an incredible personal crisis because you no longer recognize what you’re seeing. (Patient 11)

I closed my eyes and I removed the bandaging and I didn’t dare look … with my eyes, I imagined the worst. (Patient 12)

Acceptance or demand for more aggressive intervention. The patients perceive the surgery as essential to recovering their health, which is why the process is widely accepted. Some patients who demand a more invasive intervention, normally a bilateral mastectomy, do so because that way, they feel safer with respect to a possible relapse, as well as more comfortable esthetically.

If they have to remove my breast, let them take it; what I want is to get better. (Patient 16)

They say that I am in full remission, so they only removed the lump, but at first, I said that I wanted my whole [breast] removed; then they assessed how to do it. (Patient 13)

They told me that I had a genetic mutation and more possibilities of developing breast cancer and, since I felt such rejection toward my remaining breast, I decided to get rid of that one, too. (Patient 20)

Chemotherapy/loss of identity.

The chemotherapy phase is one of the phases that affects the women’s lives the most, because of its physical impact and how long it lasts. No differences have been found in how they experience chemotherapy depending on whether it was neoadjuvant or adjuvant.

Negative impact of side effects. Chemotherapy is associated with many side effects that vary from one woman to another. Many indicate that they have suffered physical discomfort, such as fatigue, dysgeusia, pain, nausea and vomiting, mucositis, diarrhea, etc.

One day when I didn’t want to go to bed, I went to bed crying because I had the feeling that I wasn’t going to wake up. That day it was because I felt awful. (Patient 1)

Furthermore, all of the women suffer hair loss, which is one of the most-feared effects. Likewise, their body hair also falls out, especially on their face, and their weight fluctuates. All of these changes lead to a loss of identity that is experienced as taking away from their femininity. It must be remembered that oftentimes, chemotherapy is administered after surgery, further exacerbating this physical change. On top of all that, several women comment having to decide at the beginning of treatment whether to freeze their eggs or not; at that moment, many of them forfeit the possibility of becoming a mother or of becoming a mother again, which also adds to this loss of femininity.

Losing my hair was hard, but when it grew out again, I had an identity crisis. I didn’t recognize myself; people said I was really pretty like that, with my hair so short. I looked at myself in the mirror and I said that I’m not that woman, I can see that that woman is pretty, but it’s just that I don’t recognize myself. That’s not me or, it was like, I looked at myself and I didn’t recognize myself. That’s when I suffered a serious identity crisis, psychologically serious, but also serious because I sobbed because I looked at myself, but it wasn’t me. (Patient 6)

Where’s that sexy lady, where is she?, because you don’t feel good. I didn’t like myself at all. I was several sizes larger and I looked at myself and said, “What a monster.” I didn’t feel good about myself. (Patient 1)

Many patients say that chemotherapy decreases their libido and dries up their mucous membranes, which is why they prefer not to have sex. For those who live as a couple, this situation can strain the relationship.

Sexually, I just didn’t feel like it, I wasn’t in the mood; not only did I not feel like it, my mucous membranes were dry and, what’s smore, I just couldn’t, I couldn’t, I felt bad for my husband, but he said, “Don’t worry.” (Patient 16)

Finally, some interviewees expressed a feeling of being poisoned by the treatment. These women tend to be highly focused on taking care of their body and have a very natural attitude toward life.

I had to really work my awareness that I was poisoning myself; at night I was at home and I thought that all that red liquid was circulating through my veins … I think I even had nightmares. (Patient 4)

Balance between caring for oneself and caring for others. The patients feel that it is time to take care of themselves, so they prioritize resting when they need it. Moreover, they worry about getting a haircut and, most of the times, they look for turbans and wigs. Some also learn how to put on make-up, which they rate as being very positive. On the other hand, those who have children or another person in their care, try to take care of them as much as they are able.

Around 11:00, I no longer felt good, so I’d go to the armchair to rest and it’s like I had an angel, because I’d wake up a minute before I had to set the table and get lunch for my son who would be coming home from school. (Patient 1)

While I was getting chemo, I went with the gadget and I told myself, “I’m going to teach you to apply make-up; for instance, your eyelashes are going to fall out. Make a line like this” and at that moment when you look in the mirror, and we look like Fester in the Addams family. (Patient 13)

Vulnerability. The women experience great uncertainty and feelings of vulnerability the first times they receive chemotherapy, since they don’t know what side effects they will suffer.

With chemo, I started with a lot of fear and, later on, I became familiar with it little by little until the time comes when you go to the hospital like someone who’s going to pick up a bit of paper. (Patient 9)

In addition, those participants who join a social network or who are more closely tied to the hospital setting, know about the relapses and deaths of people around them diagnosed with breast cancer, which makes them feel highly vulnerable.

There are some people who leave the group because… it’s not like there are a lot of relapses and, geez, I think that it messes with your head. (Patient 13)

We were almost always the same people at chemotherapy; there was one guy who was really yellow who looked terrible and, there was one time when we stopped seeing him and another lady asked and the nurse said that he had died. (Patient 15)

At the same time, given the physical changes, especially those that have to do with body hair, many women feel observed when they leave home.

If I have to go out and take off my scarf because I’m hot or go straight out without any scarf on my head and whoever wants to look… let them; I think that it’s up to us, the patients, to normalize the situation; unfortunately, there are more and more cases. (Patient 9)

Telling the kids. Since when the chemotherapy stage is going to entail many physical changes, the women look for ways to talk to their children about the treatment. Most of them comment that it is a complicated situation and all of them try to talk to their children in such a way as to protect them as much as possible.

I asked the nurse for help before I started chemotherapy to see if she had any pointers about how to talk about this with the kids and she recommended a story, but when I saw it, I didn’t like it … so, in the end, I decided to do it off the cuff. (Patient 10)

Radiotherapy/transition to normality.

The “last” treatment. When the patient reaches radiotherapy, normally, they have already spent several months undergoing physically aggressive medical procedures, which is why they feel exhausted. There is a physical exhaustion resulting from the previous treatments and made worse by the radiation therapy. Furthermore, many women also report feeling emotionally drained by the entire process. However, this is generally accompanied by joy and relief because they feel that they are in the final stage of treatment.

Emotionally, it’s a marathon that has to end up at some point. (Patient 10)

For me, radiotherapy was like a lull in the battle, with a winning mind-set. (Patient 4)

Comparison with chemotherapy. There is a widespread perception that radiotherapy has fewer side effects than chemotherapy, although later, when they receive it, several patients suffer discomfort, above all fatigue and dizziness. Several report that at this point, they are mentally worn out and just want to be done with the process, which is why they have less information than about chemotherapy.

I feel like radiotherapy is unknown, that you think it’s more “light” and it turns out not to be so light. (Patient 13)

Follow-up care/the “new” day-to-day.

Difficulty in getting back to normal. Once the patients are discharged, many feel that they need some time to recover, that it will be slow, in order to restore a more normalized pace of life. They are still working on their emotional and personal process.

When they tell you that you have cancer, they make it very clear: you have a goal; you have some months of chemo, some months of radio, and when you finish, you say, “And now, what do I do?”. I say that because now I have to get back to my normal life, but I don’t feel normal. I still don’t feel cured, I’m not 100%. And you’re glad you’ve that you’ve finished it all and you’re alive, but at the same time, you say, “Gosh… this is very odd.” It was a very strange feeling. (Patient 8)

Most patients report that their quality-of-life has diminished, due to the sequelae from the treatments. Lymphedema is one of the sequelae they name most often, although they also mention other symptoms, like digestive upset, weight issues, eye problems, scar pain, etc. The women who are on hormone therapy also suffer side effects, such as joint and muscle pain.

I have lymphedema and, although I have good mobility, I’m a little bit weak; when I go out for dinner, I generally order fish, because I can’t always cut meat well. (Patient 6)

Several interviewees also express difficulty in their affective-sexual relations. Many of them feel insecure because of all the physical changes; others have sequelae that hinder their relations, and still others are suffering symptoms of early menopause. This can cause problems in the couple and for those who don’t have a partner, suffer many complications when it comes to meeting other people.

I haven’t had sex with my husband for 2 years because, it’s also really complicated to get over; I’ve gone for pelvic physical therapy; I’ve used gels, but nothing works. (Patient 8)

It’s taken me many months for me to have a relationship again; it’s been really hard because, even though everyone told me that I looked fine, I didn’t feel fine. My breast cancer had taken away all my attributes as a woman. (Patient 6)

Some women also experience difficulties when it comes to returning to work. Several state that they had been fired when they went back. They also report that when interviewing for a job, it’s complicated for them because they have to explain what happened and they mention the schedule of doctor’s visits that they have. Other women comment that they’ve been given early retirement or disability.

You go to the interview and if you tell them that you’ve had the disease, they look at you like you’re a weirdo. (Patient 13)

Breast reconstruction. How reconstruction is experienced, as well as its timing, are highly contingent upon they type of reconstruction. Each one has its pros and cons, but the opinions collected with respect to the type of reconstruction have been positive.

Although it took 18 months for the entire process to be over, I’m delighted with reconstruction with the expander. (Patient 16)

Some patients state that after the whole process, which has been long and complicated, they prefer not to undergo reconstruction immediately. In these cases, they report having felt a subtle pressure from the outside to undergo reconstruction.

Every time I went for my check-ups, they said, “You’re the only one left [who hasn’t undergone reconstruction]” and in the end, the truth is that I’m really happy because I think I look pretty. (Patient 12)

Check-ups and fear of relapse. Check-ups are one of the times that generate most worry and insecurity. The women remark that, starting a few days before and until they receive the results of the follow-up studies, they are more anxious about the possibility of relapse.

At every check-up my legs start shaking again and my stomach is in knots, although at my last one, everything turned out okay and I’m thrilled. (Patient 6)

During the first stage, I did everything I had to do and I got over it, but it’s a lottery. You can do whatever you want, but it’s the luck of the draw and when you start going for check-ups, it’s like going to play Russian roulette. (Patient 8)

Maintenance hormone therapy. Hormone therapy is understood differently depending on age and on the major decision of whether or not to be a mother or to have another child. If the woman does not want to have more children, the treatment is accepted better. The patients who take it also report effects derived from menopause, for instance, joint pain or dry mucous membranes.

I did notice joint pain, but since I exercised, [I felt it] much less than my fellow women, although, for instance, when it comes to getting up from a chair, you get up like an old lady. (Patient 10)

Position of support. Several patients mention that, after discharge, they stay active on social media, they volunteer when they find out about someone or to participate in activities related to breast cancer, with the aim of being able to help other people who are in this situation.

It’s really good to meet other people who are going through the same thing, so, now that I’ve finished, I like it and I always help whenever I can, because I can share what was good for me. (Patient 13)

Relapse/starting over.

Emotional impact. The diagnosis of a relapse is experienced much the same as the initial diagnosis. All of the women report fear, although they also state that they are more familiar with the processes. Other emotions emerge, such as why me, blame, disbelief, etc.

Since they had told me that it wasn’t going to happen again, I believed it, of course, I wanted to believe it and it totally surprised me; I couldn’t stop crying and crying. (Patient 17)

Telling the family again. Patients repeat that telling the family about it again, especially the children and parents, is tough and they try to minimize it in an attempt to protect them emotionally.

On the very same day that I had my mammogram, my mother says that she wants to come a see the kids. We’re in the park, when she arrives, I have to tell her that everything’s fine and when we get home, I tell her everything. My mother’s devastated again and I tell her not to worry, that everything is going to be fine. (Patient 16)

Thinking about whether something could have been done differently. Several women comment that, after their relapse, they think about whether the treatment was enough or there must have been something they could have done to avoid the relapse.

You get furious, because you say, “I wasn’t supposed to get sick, because if, 2 years ago when the first microcalcifications appeared I had had them removed, then I wouldn’t have metastasis, or maybe I would. (Patient 19)

Metastatic breast cancer/time-limited chronic.

Re-interpreting the concept of metastasis. Most of the participants in this stage state that they have had to give new meaning to the word, “metastasis,” since their first perception was directly related to death. In this way, they come to understand that cancer can become chronic, although they now have to take medication and go to the hospital on a regular basis. Nevertheless, they know that their life expectancy may be a few years. The women who are involved in a group point out how hard it is to see their fellow member pass away.

What I now call my “new normal” consists of lots of visits to the hospital and never going back to work. (Patient18)

They also state that at this stage, they do not identify with the disease generally known socially as “breast cancer”, where there is great emphasis placed on early detection and on their chances of being cured. This causes them to feel more isolated.

These pink ribbon campaigns hurt us because they tend to underscore that everything is going to turn out fine because breast cancer has a very high cure rate; there is huge lack of awareness. (Patient 20)

Physical and emotional discomfort. Most of the women in this stage report side effects from the treatments, although some comment that good quality-of-life can be preserved. On an emotional level, they say that they sometimes feel a certain agony due to not knowing how much longer the treatment will be effective. They live in a state of uncertainty that they try to cope with by focusing on their day-to-day and experience the good times deeply.

When I’m not in pain, I try not to even remember what I have and go out and have fun with my family and live. (Patient 20)

Several women who have children express with regret that they worry about their children enjoying them and remembering them when they were well. They are sad that they won’t be able to grow up in a normal family. Some also comment the impact this diagnosis is having on their partner.

What I don’t want is for them to carry this baggage of having a sick mother. (Patient 18)

A conflict with disability also appears, as many women report their desire to continue working, but feel that they can’t keep up with the pace of work. Additionally, several state that going through the medical board is a strenuous process, given that they look good physically.

It’s hard to deal with, I’m a non-practicing lawyer and I have degrees galore, but I worked the first year and I couldn’t continue. (Patient 21)

Every year they call me again for the disability monitoring and they always threaten me. To be honest, the treatment doesn’t make me sick, but I don’t know how long it’s going to be like this. (Patient 19)

Social invisibility. The participants say that they do not have any physical signs of being ill, that they look fine, although they know and feel that inside, they are not well. They say that it is sometimes hard to manage socially, since on occasion, they feel misunderstood and disparaged.

I’m much sicker now, but people think or want to think that I’m fine. When I was doing chemo, it was like wearing a sign that said “cancer.” (Patient 17)