Annie

audio
Age at interview
37

Annie (37 years old) lives on her own. She works as a citizen services officer and is currently on sick leave.

Annie received her diagnosis in 2013. Annie’s symptoms started earlier that year when she noticed that her breast increased in size and then later on it became very painful, red and warm. When she also felt a swollen lymph she started to really wonder what was happening and she decided to go to a walk-in clinic. The doctor told her that it might be an infection but that he suspected that it might be a very rare form of breast cancer as well; inflammatory breast cancer. Annie saw a cancer specialist? in a private clinic on a Monday, three days after seeing the doctor. Over the weekend she had checked the Internet about this form of cancer and she felt very worried as she mostly found these three words: fast, aggressive and deadly. It then took a long month to find out if the cancer has metastasized or not following her biopsy. Fortunately it was not metastatic but stage 3 cancer. Annie then underwent chemotherapy, a double mastectomy and just finished radiotherapy. The surgery was the hardest phase for Annie. She didn’t feel she received the information she needed, such as what kind of care she needed after surgery. Having inflammatory breast cancer at such a young age worries Annie and at the same time she has found that many people don’t know much about her condition and do not understand well what she is going through. Annie therefore became an advocate and distributes information folders about inflammatory breast cancer to help increase the public knowledge. She would like to see that more attention is given to this condition so that women are more aware of the different kind of symptoms women have when they have inflammatory breast cancer. During the treatment, Annie had good support from her parents with whom she stayed while she had her chemotherapy and mastectomy.

Time since diagnosis
2 - 5 years
Phase of treatment
Remission

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So, I was starting to see some changes during the month of July 2013. Among other things, the size of my left breast was increasing. As the month evolved, the breast was getting bigger and bigger.  At some point, the breast became painful – it was very painful, warm and red. And at some point, the skin had changed (the appearance). The skin was not as it used to be. But, one morning I was woken up, and there was a lymph node – what I thought was a lymph node, that I was feeling. Then I was questioning myself because I had no idea of what I had, because I always heard that a breast cancer was not painful. Thus, I did not suspect that it could be that.

But at the same time, at 36 I was not part of the high risk target group for breast cancer. I was wondering what I had. I did not think it was serious. But on July 26, 2013 I went to a walk-in clinic because at that time it was really painful and I was wondering. The doctor, that I saw, told me that it could be a mastitis, a breast infection, but that he suspected that it was a rare form of breast cancer called inflammatory breast cancer. And he told me that he was worried. It was a Friday afternoon and he told me: “It is a private clinic or the emergency.” It is not often that a doctor tells you that he is worried. So I panicked a little bit.

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Whereas in the English group, there are some; so I needed to have hope. Because with a recurrence rate of 50%, and a survival rate of 50%-40%, it is like… not easy to have hope. So I needed to have some examples.

Interviewer: And how do you live with thinking of a 50% recurrence as you said?

I find it difficult. What I find difficult is that since the inflammatory cancer is not a well-known cancer, unless you work in the healthcare sector and even though, it depends on the title of the person… Often, 99% of people that my parents or I spoke to, they had no knowledge of it. And I am under the impression that even if I say that it is severe, that is a severe sickness, I am not sure that everybody understands this. I find it difficult and I am like, I am under the impression that they do not understand that I am not joking about the recurrence rate in my case; I was told that it is 50%.

And this, I think that people do not understand, that’s it. I find it very difficult for now, but of course it has not been long since I finished the big treatments. So may be with time I will learn to live with it, but for now I find it difficult.

Interviewer: Did you find support with the women on Facebook?

Yes. I would say so since I registered with the English group and that I have examples. Things are not quite as bad. But I would say that having examples it is still difficult but not quite as bad.

Interviewer: From women that have survived for a while?

Yes.

Interviewer: …for how long?

In find it a little bit less difficult to have hope. I believe it a little more. I would not say that I believe it 100% but I believe it a little more. It’s easier to believe it.

Interviewer: And what is your information need? Are there things that you would like to know more about? On the inflammatory cancer?

I would say that what I needed, I wanted to know more about what was going to happen after the treatments, what can I hope for or not? And I also wanted to know… have information that could give me hope. Yes.

Interviewer: What kind of hope?

No, it would be giving me more reasons to hope that I have more than three years to live, because I even saw that 50% of people died less than four years after the diagnosis. I already have one year behind me, so I have three years left. I want to hope that I have more than that left, but I want to be realistic as well. So…

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No. In my case, in the case of inflammatory cancer, they tell us to wait at least one or two years after the radiotherapy. And in the case of inflammatory cancer, they must remove as much skin as possible because in this case, the skin is affected, which is not necessarily the case of other forms of breast cancer.

Interviewer: Do you want to have a reconstruction after one or two years or you still don’t know?

But right now, I don’t want to have the reconstruction. I found the surgery so difficult and I was told that reconstruction is an even bigger operation. So right now, I don’t have the intention to have it. However, what would, what I liked, and this was confirmed by my surgeon, if let’s say next year or in two years I am not ready, but in five years I change my mind, it will never be too late for me…

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So finally, that’s it, I didn’t know. I learned about this almost after one month. Before I knew if I had metastases, I suppose, and other tests to be done. So the month was very long. Especially because I had pain and I told myself, I wasn’t feeling better at all. So I was in a hurry to start the treatment, whatever they were! But that’s it, no, at that moment I had undergone tests to find out if I had metastases. I had undergone the bone scan and the CT scan*(Computerized Axial Tomography Scan).

And that’s it. Finally everything was fine contrary to what the surgeon had thought. And I was lucky because what I see from other women with inflammatory cancer, the majority of women are being told at first that it is an infection. So they are being prescribed antibiotics, and the sickness continues to progress. So when I knew that I was, that I had metastases, I was very happy to have found a doctor that told me the very first time, that was vigilant enough to think that it could be it.

*CT scan: Body scan that produces cross section images of the body’s internal structures.

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Except that for me, in the Fall I had seen a radio oncologist for the first time to plan the treatments after the surgery. But I can’t say that it went very well, but it was ok. But when I saw her again after the surgery, I was really discouraged after seeing her. She told me that it could go at least to the second degree, that it was certain. It was automatic… that I would have a hard time to eat, and she was, everything to discourage me.  I was already scared of the radiotherapy! Frankly, I found that it was not reassuring me at all. During few days I seriously thought of not even having radiotherapy because with the type of cancer that I have I was telling myself “Is it worthwhile to suffer so much for the time I have left to live?” I then asked to change doctor. I called the hospital and asked to change doctor. I said that it was not working for me with that person, that if I was really to burn to the second degree I needed someone with empathy since that person didn’t have any. That’s it. I thought I would have to fight with them, feel some resistance because I was asking to change doctor, but no, they immediately did it. And after, with the second doctor, it went very well. He was super nice. So it was the second one that talked to me about the hotel. And he told me “No, if I see that the burning is too severe we will do, we will work at controlling it so that you burn as little as possible. Yes, you will burn, a little bit like a sunburn. It was much less… listening to him it was not as bad as what the other told me… What the second one told me is what happened.

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I would say that what I found the worse about the surgery, it is not the surgery itself, because I cannot say, it was not the surgery itself that scared me. I wasn’t afraid that I wouldn’t wake up or that it wouldn’t go well. It was more the side effects after. And it was worse than I thought. Otherwise what I found the worse is the loss of autonomy among other things. In my case, I was not even able to put on a shirt by myself, or a pyjama, or a coat for about two or three weeks. I couldn’t. I always had to ask for help. I also had a hard time to wash myself since they had removed lymph nodes on both sides. It was still a big operation that I had compared to other women. So… So I didn’t have the use of my arms. Still it is a minority of women that have both sides done at the same time. So, but this is it, I didn’t have the use of my arms during that time. So, like at home I do not have anyone to rely on to help me, but I spent a month at my parents’ house to get a little help.

Otherwise, in my case I had excellent services from the CLSC. They came every day or almost every day, except when I had visits to the hospital, during a week and a half. Even during the week-end they were coming to change the bandages. Once I had a problem with a drain and they came, a second time the same day, so really. My surgeon had made the service request so it went very well. But six months later even if there is a large improvement, you know, I have not recuperated 100% of the movement of my arms. But of course it is faster for some and slower for others. I am one of the more complex cases.

Of course there are scars following the operation. In my case it starts on the side, really in the back, almost in the back through the same place on the other side. All in the front through the other side almost in the back, and about the equivalent of two fingers where I was not cut. So I really have two large scars. But I find that one looks better than the other. But it is because I thought that they would both be the same, meaning both going in the same direction. But on the left side, the scar is really horizontal, as on the right side it is more diagonal. So, I thought that the scars would be more similar than they are.

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It is not often that a doctor tells you that he is worried. So I panicked a little bit. I thought that I had insurance so I went to a private clinic and I got an appointment right away, three days after. On Monday morning, I spent the whole day doing tests. First it was supposed to be only a breast ultrasound, but finally while doing the examination, the surgeon decided that a mammogram and a biopsy would be done. So I was thinking that things were not looking good. Specially that during the weekend I had looked on the Internet to see what they were saying about the inflammatory cancer. In French there was nothing much, but in English there was a little bit, but it was stating that it was fast, aggressive and deadly. So I was a little discouraged especially since the doctor at the private clinic thought that it was metastatic and consequently that I was too late.

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I would tell you that I didn’t, I didn’t have problems. However the support of my colleagues came a little late because, even if me with my team leader at the time – I had completed all the paperwork and I had told them – I had given the permission to talk about it, but it’s like it was kept secret during many months.

At some point in time, it’s me that informed few people and then, a little later, the news started to spread, but it really took some time. No, it wasn’t… it wasn’t like I hoped it to be.