The women we interviewed described testing as a step-by-step process involving different stages and types of tests before a definite diagnosis could be made. The tests that seemed common to most women we spoke to included a mammogram, an ultrasound, and a fine needle or core biopsy. Some women described the testing period as fast or at least some parts of it as being fast. Nadia(B) for example, went to the ER (emergency room) the night she first noticed a lump and was booked straight away for an ultrasound the next day.
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.
The hardest part I think during that time was the waiting and knowing you had this cancer growing inside of you and you just want it out. You just want it out, but that sensation, it was always kind of lingering in the background, that burn that itch and, of course it’s on your mind.
Women also spoke about how different circumstances affected the time it took for testing and diagnosis. Deann and Lorna underwent testing for several years before the diagnosis could be made. Deann underwent a follow-up two years prior to her diagnosis but nothing was found. Lorna had concerns for a couple of years but because of the density of her breast the technicians were unable to make sure if there was a lump. She was relieved when the lump was finally detected. Gaye on the other hand noticed a fast growing lump one month after her regular screening and was able to follow-up rapidly. Debbra felt lucky that she happened to have a senior technician who discoverd a rare form of cancer that is difficult to detect.
And so she felt it and she’s like, “Don’t worry it’s probably just a cyst,” so I didn’t even worry at all either but she gave me a referral paper just in case.
So I didn’t see my doctor; he was on vacation. I saw a resident and I was prescribed an ultrasound, which I had done in a radiology centre. I had an ultrasound and I had insisted to have a mammogram also, knowing that I was still breastfeeding at that time. I was still breastfeeding my 2-year old daughter at the time. I had an ultrasound, a mammogram and the radiologist did the ultrasound on the left breast and he left. Then I called him back and told him: “Listen, you forgot the right breast.” He came back and did the ultrasound on the right breast. Everything is ok, it is a cyst. But I don’t know, something inside me was telling me: “Go, get a second opinion.” Because I left and was told: “There is nothing, those are only cysts.” I went back to my family doctor, but he was on vacation. So I went back to the doctor who prescribed the ultrasound, the referral. He gave me the result and told me: “It’s nothing, it’s a cyst.” And all that. Then I said: “Listen, I want a second opinion. I want to see a breast specialist.” So I was sent to another centre. I booked an appointment the week after and the doctor that I saw there told me, after feeling the right breast, “Listen, what I am feeling there, it’s hard, it’s not a cyst.”
Issues during testing
Most of the women we spoke with underwent a mammogram, an ultrasound, and a fine needle or core biopsy. Even though for the majority, the testing went rather smoothly others described unexpected events or had more painful memories of the tests.
Dense breasts have less fatty tissue and more non-fatty tissue compared to breasts that aren't dense. Dense breasts can make it harder for mammograms to detect breast cancer and dense breasts have a higher risk to develop breast cancer. Iceni for example, described being told that she has dense breasts. She was surprised to hear that the lump was bigger then initially was expected. Julia and Margaret noticed a lump in their breasts but the mammogram and ultrasound did not show anything suspicious; only the biopsy showed invasive breast cancer. Malika suspected something in her left breast but in the end her cancer was found in the right breast.
I had my first mammogram in 2009 and at time everything was ok. And then I also had the spot compression in 2009 and everything was okay.
And then so 2 weeks later they got the results back and they called me to say, “Okay we’ve got the results, come in for them,” and I’m like okay well I guess I’ll probably have to get a mammogram today too you know just to make sure everything’s okay. So I took a pregnancy test because I knew they were going to ask me that question again and it actually came up that I was pregnant. And that was at about 8 o’clock in the morning that I did it or9..So I had my doctor’s appointment later on that day, a few hours later and then I found out that they actually had found cancer, so it was the same day.
So once that initial shock was over the next was the biopsy. The Breast Cancer Clinic phoned almost immediately to have the biopsy. During that biopsy, the doctor was having a hard time locating the lump it was so small. I believe once the autopsy (results) came in it was 1.2 cm and that initial biopsy came back benign.
Anticipating the results
Women described how they felt about waiting for the diagnosis and undergoing the tests. Some had a sort of gut feeling that something was wrong and anticipated the diagnosis of cancer. Others started worrying after a particular reaction from the technician during testing or after they were asked to come in for another test. For some, the diagnosis came as a big surprise as they hadn't anticipated anything or because they had different expectations about how they would find out, from whom, and where. Some women were not worried at all during the testing nor for the results.
And then all the things lined up and 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. Because when I was sent to the breast assessment unit at the hospital, the radiologist at the time was going to try to do a biopsy and when he did the imaging he had a really hard time seeing what she was pointing out on her imaging.
So that’s when I was sent for an MRI (Magnetic Resonance Imaging) and then with the MRI lit up, my breast lit up like a light bulb because it was so diverse and so spread out. And then I had to go back for a biopsy and then at that point the radiologist had said, “What we’re doing now is trying to get the best biopsy so we can confirm that it is cancer and you don’t have to go through a surgical biopsy.” To try to miss one step. Which was hard at the time to hear, when you go in, but I sort of had a gut feel that there was something wrong anyhow so I did not know that this was going to happen like this so, I was alone. I didn’t have anybody with me I was just thinking I was going in for a biopsy. So I think that what I learned, is if you start going through this process you should have somebody with you at all times. Because it was really hard when he said, “Now we’re going to try to confirm that it is breast cancer.”
- * MRI: Imaging test that creates a 3-dimensional picture of the body’s internal structures using magnetic force and radio frequencies.
Receiving the diagnosis
Women received their diagnosis is different ways. Some women for example heard during the testing that something looked suspicious, other were requested to come back to the physicians or oncologist's office, and some heard the diagnosis through the phone. Isla was alarmed when the doctor called her asking to see her on the weekend.
I went to book an appointment, however it took me a while, I think a month or a month and half to have a biopsy and, following the biopsy, it took a while again to know the result. They told me: “If it’s serious, if it’s severe the doctor will call you the first or the second week, but it will take three weeks to get a result.” I am a dental prosthetist.
Some women, however, did not feel upset and felt they were able to accept the diagnosis immediately or even felt relieved that they finally knew what was happening.