Understanding the diagnosis

The women we interviewed described many different ways of coming to understand their diagnosis. It took time to undergo the testing and meeting with their healthcare team to learn of the diagnosis. It also took time to familiarize themselves with breast cancer in general and the implications for them personally.

Most women had little idea about the illness and the consequences at the beginning. Nadia (A), recently diagnosed, doesn’t even like to say the word ‘cancer’. And someone else said “At the moment of diagnosis you don’t have a clue what is happening to you and how your future will look like.” Kathryn explains that there are parts of having cancer that nobody prepares you for. Amanda read information at the start but then the second time she read it if felt like she was reading it for the first time again; it was not sinking in.

Understanding the diagnosis

I just think that everything is worse in your mind until it happens. That’s why it’s so upsetting when you get a diagnosis of cancer because it’s terrible and every stage of it is terrible. But then, when you’re actually going through it, it’s just another step of it. It sucks but you get through it. I’m not the first person in the world to have done chemo.

View profile
 

Understanding the diagnosis

Will knowing the diagnosis change something? However, I know that the oncologist told me it was a hormone dependent cancer, which means I cannot take hormones. This I know, but the stage. But at some point, because I did not have metastasis, he said: “It is good for you.” Instead of having three hormone receptors negative, I only had two. There was one positive receptor and two negative ones. But the oncologist told me without me asking him, because I wasn’t familiar with this. He said: “In your case, yes it is good…” “What about my case? It is a cancer”. Today he probably knows how I lived through this and how it did happen for me. May be today he understands that I had no reaction because I was not there, I was in my bubble. But I learned little bits here and there, although the puzzle is not complete yet.

View profile
 
Everyone had different interests and needs regarding what they wanted to know and learn about their diagnosis. There is no need yet nor expectation that you have all this information until your precise diagnosis is known. For Christine, it was important to know what was going on in her body and she preferred to leave it to the professionals to figure out the disease processes. Patricia's main focus was on learning what to do next after the diagnosis. Tina explained that she did not have any precise knowledge about her breast cancer; she had not received any information about her diagnosis and was not aware that she could ask for details. Like Tina, some other women had little knowledge about breast cancer let alone about the different types of breast cancer.

Understanding the diagnosis

I think I was completely clueless about breast cancer and I think that’s a huge reason why I decided to make my story so public. With my blog, I write about everything that I know about breast cancer and everything that I’m going through and take videos of what it’s like, because as a 20 something year old, you have no idea what it’s like.

View profile
 
However, most women did increase their understanding of stages and grading of their cancer over time. They also learned that certain specific characteristics influenced their diagnosis. For example, whether the cancer was hormone dependent and how this affected their treatment and decision-making. They also used expressions to describe the level of aggressiveness of the cancer. For some, it came as a surprise when the cancer turned out to be more serious than what they thought it to be the first time they felt the lump.

Understanding the diagnosis

audioclip
Transcript

I did go on some websites but I tried to stick to the medical websites to explain the stages, the size of the tumour, what that meant, and the lymph nodes, etc. The doctors were very matter of fact. Breast cancer, right now, is probably one of the better cancers to get because they’ve done a lot of research. There’s a lot of women who’ve undergone it, and so, as soon as I got the diagnosis, they were like, “Don’t worry. This is what we’re going to do. We’re going to do this, this and this.” It’s very clear and all of the way through they were very positive. They’re like, “This is not a death sentence, and this is curable. The success rate is fabulous, it’s gotten better.” Over the years, it’s increased and you can see by the stages what the success rates are and what the survival rates are, etc. It’s very well documented so I feel like I’m pretty well informed about what’s going on, about what the protocol is, what the success and survival rates are, and what needs doing. But always at the back of my mind is the fact that it’s 10 years that I have to be followed. And if it comes back, it’s usually worse. So even knowing how successful they are at counteracting and fighting breast cancer, I’m still scared at the back of my mind that it’ll come back. And I think I’ll be scared for 10 years.

View profile
 

Understanding the diagnosis

You know I got copies of all the reports and they were reviewed. My GP (General Practitioner) reviewed them, my oncologist reviewed them, I asked questions and I still am uncertain with the staging, the stage 3 that came with the cancer.

View profile
 
Melissa said that the grading and staging terms are medical expressions, referring to the development of the cancer cells and don't necessarily point to overall prognosis or personal implications for the illness and treatment. Others also discuss the complexity of breast cancer and how learning more about the diagnosis means they are often confronted with things they do not know or understand. Today this is true for many other diagnoses in medicine and treatments are more complex.

Understanding the diagnosis

audioclip
Transcript

I don’t think the medical community has a full understanding of it. To be truthful, if you start to look at what we know about tumour markers and prognoses, and if you look at tumours that have high hormone receptors and express the HER2 *(Human Epidermal Growth Factor Receptor-2) proteins and also express progesterone, then I don’t think we know that when you start slicing and dicing your tumour so that there aren’t millions of you. But now there’s thousands of you worldwide, then you don’t have the current survival curve anymore, because you can’t get it for that type of tumour. You don’t really know as much anymore about that particular type of tumour. So as we get to more personalized medicine in breast cancer and more knowledge about pathology and tumour pathology, those survival curves are going to have confidence bounds on them, like this wide, because there’s not enough people in each of the categories anymore. So how do I answer that? By saying that some people with my type of disease do fabulously well and never have a recurrence, and some of them don’t, and that’s all we know about it. Breast cancer is really sneaky. Sometimes the most innocent looking tumours tend to be difficult later on and some of the tumours that present with sort of really horrible characteristics and that look like bullies, you stand up to those bullies and they go away. And when you ask an oncologist this question, they all tell you, “Hmm I don’t think we have a survival curve for you,” because there’s so much misclassification. So if you look at a survival curve for hormone positive tumour, but your tumour also has another characteristic. Well which bin should you be in? The hormone positive one or the HER2 positive one, or the combined HER2 positive one? But what if you have the PR positive* (Progesterone-Receptor-Positive)? Well then there’s no bin for you. So you’re misclassified all the time.

  • *HER2: A gene present in cells that, in some breast cancer cases has a mutation. This mutation causes the HER2 gene to be overproduced in breast cells, causing cells to be more aggressive. However treatments that target HER2 are very effective."
  • PR Positive: The cancer cells’ growth may be promoted by signals from the progesterone hormone.
View profile
 

Understanding the diagnosis

I also understand that breast cancer is very complex because it reacts differently in every woman. Therefore, this has an influence on the understanding of the sickness. It is difficult to understand when you are being told that: “Well, there is this type that is positive, negative, the hormones…”. It comes to a point that, for me, it is too much!

View profile
 

Risk factors

The exact causes of breast cancer are still largely unknown, although certain factors have been linked to the disease which would affect your chances of developing cancer. However, it is also possible that women with many risk factors don't get the disease while others who have always taken care of their health and lifestyle do get breast cancer. This may explain why some professionals say that it is 'bad luck' for some women, in part because the causes for breast cancer are not yet well understood.

There were certainly women in our sample that mentioned how they didn't have these risk factors and yet still got breast cancer. For example, they did not smoke or drink or had healthy lifestyles, paying attention to diet and regular exercise. Deann commented that she still got breast cancer despite that she breast fed her children, where breast feeding is known to reduce the risk of breast cancer.

Understanding the diagnosis

It has absolutely affected who I am. I realized that one of the things is that I was a vegetarian for 25 years. I eat organic food, I do the 100-mile diet, I meditate, I work with essential oils, and I thought I was really healthy. I thought I was really doing good and that I was doing all the things I needed (to do), maybe not all the things I needed but I thought I was doing better.

View profile
 
Others felt that certain aspects of their life may have contributed to or caused the breast cancer even though they are not known as causal links. Things like taking birth control pills or pills to manage symptoms for menopause, food they ate, or stress in their lives. Iceni tried to find out if the iron in the water of her village could have been a problem but she never received an answer. Nadia (B)'s oncologist told her that she was just not lucky to be diagnosed with breast cancer but Nadia (B) personally thinks that she had too much stress in her life.

 

Isla on the other hand believes that you should not bring it onto yourself. She said. "There's no relationship between living a stressful life and developing breast cancer because if there were everybody would have it because life is stressful". Some other women wondered for a while "why me?" but told us that they learned not to do that anymore or they moved on to focusing on what to do next. Others said that they told themselves "why not me?" or they choose not to think about it anymore. Isla feels that it is important to educate other women about the illness and at the same time to not label all people with breast cancer with the same type and condition.

Genetic breast cancer

Some women talked about breast cancer in their family and some expected to get it themselves. Christa and Isla described trying to live a healthy lifestyle knowing that they were more at risk, but were still surprised when they were diagnosed at a young age.

Understanding the diagnosis

audioclip
Transcript

The diagnosis, I don’t know. I have known for quite a while that I was going to have it. I don’t know why, because my mother had it at a young age. There are a lot of breast cancers in my family, thus I knew I was going to get it, but not at this time, six weeks after my mother’s death. It was too much at the same time. What was difficulty for me was not the diagnosis, the cancer or the grief, I didn’t know anymore. There were mixed feelings, but the cancer itself didn’t frighten me.

View profile
 

Understanding the diagnosis

audioclip
Transcript

Well as far as my experience goes, it had run in my family and so I’d gotten a couple of tests done just to see a baseline. I think I’d had one done before and that was when I was about 34 years old. My mum had it 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 would know what my breast tissue was like and we would know what to look for. And then my husband and I had started talking about maybe having kids, and so I thought I should probably get a test done just 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, and that kind of thing.

View profile
 
Other women, such as Christine and Melissa, had not yet decided how to deal with the knowledge that there was breast cancer in their family. Melissa said that she would have to take a whole series of other decisions if she tested positive for genetic breast cancer, she decided not to get tested yet. It should be known that genetics is usually not a risk factor for the majority of the diagnoses of breast cancer.
Review date
2018-04

Topics