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 it felt like she was reading it for the first time again; it was not sinking in.
Everything is worse in your mind until it actually happens. Amanda feels that you can get through it.
Transcript
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 […]
May-Lie emphasized the importance of how you feel during the treatments rather than the importance of understanding the exact diagnosis.
Written testimony
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.
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.
When Nalie heard her pathology report for the first time it sounded like Chinese to her.
Transcript
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 […]
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.
Carol describes how medical breast cancer knowledge has increased but she is not fully reassured; there is still this knowing in her head that it could possible come back.
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 […]
Even though stage 3 scares Shelley but she also feels that there is too much emphasis on numbers. Shelley does the best she can so that she won't have any regrets.
Transcript
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. Because, all the anecdotal notes and all of […]
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.
Isla explains that the more precisely you look into your personal diagnosis the more difficult it is to find the right survival curve.
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 […]
Julie decided that she wants to focus on what is happening with her and how that can help her.
Transcript
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 […]
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.
Donna had a healthy lifestyle but realized that because the causes of breast cancer are unknown, she wasn't different from anybody else.
Transcript
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 […]
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.
The timing of her diagnosis was difficult as Malika had just lost her mother to advanced breast cancer.
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 […]
Knowing that there is breast cancer in her family Christa wanted to have a baseline screening before getting pregnant.
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 […]
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