The women we spoke to had quite different experiences regarding the discovery of their breast cancer. It’s important to note that despite some similarities, symptoms were almost never described in exactly the same way, and each woman had their own unique story about the first symptoms of breast cancer.
Noticing a lump
Women can develop lumps in their breast for several reasons. Not all lumps are breast cancer – many lumps can be non-cancerous or cysts caused by hormonal changes such as with menstruation or menopause. All women should be aware of what is normal for their breasts even if they get regular screening tests. Many women, we spoke with, found their own breast cancer by noticing changes in the look and feel of their breasts. It is important to see your health care professional when you notice something unusual in your breast, even if a mammogram was recently normal.
For the women who noticed lumps described them feeling like a ‘mass’, or ‘bump’, or ‘something there’. Often, they were discovered while involved in daily activities such as showering, exercising, washing dishes or watching television. Lumps were typically described using words such as small, big, prominent, definable and/or hard. Although less commonly reported, Nadia (A) and Deann had noticed that their lumps increased in size over time, while Melissa had noticed a decrease in size. Julia thought she had a cyst but was advised to still check it out by a friend who is a doctor.
I was reading in bed in my bedroom without a shirt on and I was reading my book. I went to scratch my boob and I felt a craggy, like a pretty hard lump, inside it. It was big. I scratched it and I was like “What is that?” So I woke up my partner and I was like “What is this?” and he was like “Well I don’t know” and I went to the doctor the next day. They got me in right away and I was 29.
Sometimes a lump was present but women were unable to feel it themselves. Sirkka, for example, could not feel a lump because its placement made it difficult to locate and feel. In other cases, doctors noticed a lump and referred women for further testing.
About just over a year ago when I went for my annual exam with my GP (General Practitioner) and she did the breast exam. First, she felt right here on this breast and then she went “Hmm”, and then she felt on this side and she went “Hmm”, and then she came back to this side. And whenever they go back and feel again that’s a bad sign. She said “I don’t know.
Other signs and symptoms
Although most women spoke about finding lumps, others described different signs and symptoms. For example, the area around their lump (or affected area) was painful and/or sensitive. Others felt pinching, tenderness and tingling in their breast(s). Debbra described a gut feeling that she needed to get herself tested and asked her physician if she could have an early mammogram. Malika wanted to get herself tested after her mother passed away because of breast cancer and the found her left breast to be a bit painful.
Mine was a unique start in my journey. I lost an aunt and it wasn’t to breast cancer but it was to cancer. And for some reason I just had this feeling in my gut that there was just something and I can’t explain it. And so, I just went to my physician and asked to have a mammogram early. And then all the things lined up. So with the mammogram, they’d seen something suspicious and then they sent me for an ultrasound. And I was just lucky that I had a senior ultrasound technician who realized that what she was seeing was just different than what she’s normally used to seeing. She wasn’t seeing a lump because I was diagnosed with mucinous cancer, which is a slimy cancer that sort of spreads and so you don’t get the lump. I did have another component to my cancer but it was a smaller component. So it was very, very fortunate that I had an experienced ultrasound person who saw it.
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.
I was putting my daughter to bed and was laying on my side when I realized that there was something strange with my breast. I felt a lump, which was sensitive. Then I asked my partner at the time to have a look at it. I showed it to him. We thought it was a little strange and it stayed on my mind. It was around the month of November.
Okay, so back in 2011 I was sort of dabbling with Reiki. Reiki is a transfer of energy. It’s an alternative style of therapy and I was working on myself, family and friends; and I was working my daughter’s friend’s mum’s back.
Reactions to noticing the first symptoms
Many women were alarmed when they first found a lump or noticed other signs. As Nadia(A) said, "I was in the shower I felt a little lump and I said What's that? And then when I finished (my) shower and I came out I start(ed) feeling and there was something there, it was not normal. So I said to myself 'This is wrong.'" While some women were scared or concerned like Nadia (A), others were not worried, or thought the symptoms would go away. Joanne for example, thought it would be nothing as she was still young. One night she visited a friend who was very concerned about her own lump. Later she discussed this with her husband and he encouraged her to go for testing. Sometimes the women decided to share their observations with their doctor while seeing him/her for another health issue.
After finding a lump, some women found it helpful to confide in friends and/or family before seeing a doctor. Tina told her husband about finding a lump, but told us that she found it easier to talk to her friend, who had had breast cancer in the past. Melissa chose not to tell her family initially, so as not to worry them. However, she and some of the other women shared their observations with friends who were health professionals (e.g., radiologists and general practitioners). Who typically encouraged them to see their doctor and/or to go for testing.
Medical history, health care professional and testing
A previous medical history related to breast health made it sometimes more difficult to diagnose breast cancer. For example, a history of cysts or lumpy breasts can make it hard to identify new bumps, and/or to distinguish between a cyst and a cancerous (malignant or benign) lump. Changes in breast tissue, such as those related to normal processes of aging, pregnancy and hormonal fluctuations can also make diagnosis difficult.
Well when I first suspected something was wrong was after a 2-month period where I had thought it was fibrous cysts in the breast because I used to have those quite a bit. And one time, I went to a surgeon and he suggested coming off coffee because the coffee was causing the fibrous cysts. And once I came off coffee they were gone. But this time, after 2 months, they didn’t go away.
I guess I first noticed a small lump on my breast myself. I was fairly young at the time. It was a couple of years before my diagnosis that I noticed a lump. And the first doctor I showed it to wasn’t concerned at all. He said, “You’re young,” and at the time I had had an ectopic pregnancy.
I think I’d had one (mammogram) done before and that was when I was about 34 years old. My mum had it (breast cancer) when she was 45, and my grandma and all of my aunts had had it as well. So I kind of thought that I would probably get it, but I didn’t think it would be for a long period of time. But I thought I would just set a baseline up just so we know what my breast tissue was like and we knew what to look for. Then my husband and I had started talking about maybe having kids. So I thought I should probably get a test done because I knew that I wouldn’t be able to do that for a few years after I was pregnant and when I was breastfeeding. So I thought I would just go and get another test, like a yearly test done just to see if everything was okay. I was 35 at that time. When I called in to try and get it done, there was quite a bit of resistance to do it, because they thought I was too young. So I had to be a little bit more forceful about it. But I was able to go in and they asked if there was a chance that I could be pregnant. And at that point in time I think I had been off the pill for a couple of weeks or a month or something like that. It was probably about a month. I was supposed to get my menstrual cycle in a couple of weeks and so I said, “Well there’s a slight possibility,” but I’d been on the pill for 20 years or something like that and I hadn’t been off of the pill for long. So we were just kind of joking around and they said, “You know this time we’ll just do an ultrasound of the tissue and then we won’t actually do the mammogram.” So they decided to do that just in case there was a chance I was pregnant. I had had no tests done or anything and they found a lump at some point in time. I was the last appointment at the end of the day and so they said, “You know, normally we would just take a biopsy of this right now but, because it’s the last appointment in the day, we’ll do this tomorrow.” So I think I came in the next day or the day after and they took a biopsy of it and I didn’t really think too much of it because I just didn’t think it would be that soon.
I felt the bumps on my left breast at the age of 23, if I remember, so it was almost 10 months before actually doing something about it. I was in the shower and I had just worked out because I used to be really, really active and sporty and fit. So I came back from the gym once and I was just scrubbing my upper body and as I was scrubbing my left breast.
Currently in Canada, screening for breast cancer is recommended for women at average risk between the ages of 50 and 69. Research has also shown that regular mammography can significantly lower the risk of dying from breast cancer for women in this age group.
Not all of the women we spoke with, who were eligible for screening, were actually going for regular mammograms; some had not been screened in a long time, or ever, before their diagnosis. At the time of her diagnosis, Sirkka had not gone for a mammogram in 9 years, “That was a huge oversight on my part, I should have been having mammograms but the thing is, I did everything right. I ate right, I exercised, you know what they say, how they say do this to prevent cancer to stay healthy. I did it all and I still got cancer.” Iceni and Donna had encouraged their sister and friends to go for their mammograms and had volunteered to get tested at the same time, as an incentive for them to go. This was the moment that their own breast cancer was detected.
For some women, it took a while before the lump was discovered. In some cases, they had felt a lump but it was not noticed on the mammogram. Or in hindsight, some doctors noticed that the lump had in fact been present on past screening results, but had not been noticed by the technician/radiographer. Ginette’s lump was not noticed in an initial mammogram but then was detected 2 years later at her next check-up. She felt angry that it had gone unnoticed in the screening before. Patricia went for screening only because her doctor encouraged her strongly to go; she had not felt any lump before screening.
Jeanette went for regular mammograms from the time she was 42, and her breast cancer was first noticed during screening. She now tells everyone to have mammograms, because she believes they saved her life.