Most women we interviewed talked about the different ways they sought and managed information to help understand their illness and how it affected them, as well as how they shared their knowledge with others. The role of healthcare professionals in offering or helping to find information was highly variable.
If you want to read more about how women came to understand their illness and diagnosis you can visit understanding the diagnosis.
Searching for information
Trying to find and absorb information during the diagnosis period was often overwhelming for women; they had problems knowing what to look for and sifting through the many resources available with information on breast cancer. Christa said “I was almost frenzied in how much research I did. I just looked and looked and looked and I had this one box that I would call my like ‘cancer box’ and it was huge.” Some chose not to look for information at this stage but to wait until they were further into the process, as a way of dealing with this information overload. Nalie, for example, found it scary to read information while waiting for a diagnosis, and so, she waited for the results first. Nalie described reading only about what she was facing next; for example, only searching for information about chemotherapy and not thinking yet about what could come next.
Finding and sharing information
So my niece she, was as I told you, she’s a smart girl. She got me through this thing and I would talk to her for hours. She would send me links. She would say "You know Nadia look at these links read about it make sure you know when you go to the doctor what they’re talking about so be prepared before you go there". And my husband was there too.
Debbra thought it was best to not read everything at once but to begin with understanding the different types of breast cancer and how each is treated differently. She said, "So, do you need to go down the road of thinking that you might have to have a mastectomy and go through all of that fear and worry for nothing (as you may not need it)?"
Sources of information
Women mentioned receiving information from different sources, for example from the hospital, library books, family and friends who know about breast cancer, the Internet, and other patients. Susanne and other women described receiving a cancer care kit from their hospital, also called a Lupin kit (the Purple Lupin Kit is a resource from the Canadian Breast Cancer - Atlantic Canada chapter). Some women described the value of being able to sit down with a nurse who walked them through the different steps and explained what to expect. May-Lie found important resources for help thanks to her hair dresser.
Finding and sharing information
Interviewer: You received a whole set of information?
Even though the Internet was frequently mentioned as a resource, women also described the risk of accessing less reliable information. They verified the quality of the information in different ways. For example, they cross checked the information using reputable websites such as the Canadian Cancer Society, and were very careful with resources such as blogs because the information may be untrue or upsetting. Amanda experienced that other peoples' stories could be upsetting and experienced devastating emotions while reading a blog.
Finding and sharing information
I certainly did some searches on the Internet, but also, I’m an old-fashioned kind of girl in the sense of sort of being quite critical and critically thinking about what it is that I’m reading on the Internet. So I did the Canadian Cancer Society and the American Cancer Society and some of the universities in the States who’d had sort of stuff on cancer.
Another valuable resource for information was the shared experiences of other women, for example through support groups or just in speaking with other patients. This was valuable because it made the illness more 'real' to the women we spoke to; it was an opportunity to learn; it helped women to understand that things will often get better; it helped with finding other resources; women stopped feeling like 'the odd duck'; it comforted and validated their own feelings and experiences; and, they were able to ask the questions they really wanted to ask. Amanda said, "It is really important to learn as much as you can about your own disease before you compare it to someone else's story because they know all theirs because they've been through it." Ginette said that her support group was great but it was very hard to see some of her friends get sicker and die. Some women found it difficult to connect with the group, for example, because there were big differences in age, or people were overly positive or just very sad. But there were also women that did not like support groups or did not yet feel ready for this sort of activity.
Women described different kinds of support groups. Some were members of groups that exercised together (e.g. a dragon boat racing team); others participated in support groups specifically for advanced breast cancer, for mastectomy, or for grief. Support groups were for example found through hospitals, religious organizations, Facebook, community organizations or universities.
Information needs
Even though most women said that there were many resources with information about breast cancer, they also found specific information lacking – or difficult to find.
Donna felt that the system was not providing her with the information she needed. It was a friend who helped by sitting down with her and answering her questions. A roadmap, showing the treatment pathway, would have been helpful for her. Women spoke about specific gaps such as information for young women, about existing services, and on subjects such as sexuality and fertility.
Finding and sharing information
And then I found about Willow support group. I don’t know if they’re in Quebec but they’re wonderful.
Christa was pregnant during the time of her diagnosis and could find little information on cancer treatments and pregnancy. Debbra was much younger than the average patient with her specific breast cancer and did not find a lot of information that could be applied to her age group. Sirkka, who experienced complications with her reconstruction, felt that she should have been better informed. Annie found it difficult to find information on inflammatory breast cancer in French; she found a little bit more on English websites.
Laurie thought it is time to give more power back to the patient and that information should become more personalized by, for example, providing people with pictures of their tumour and how they have been removed or pictures of their radiation area, as well as the latest blood results or graphs showing women’s weight changes during treatment.
Information management
Women had different ways of managing the information they had or needed. Julie kept a notebook with questions and information to help her learn about the illness. Debbra typed a drug list in her computer which she carries in her purse. Laurie brought printed chapters of books with her to read in the waiting room.
Finding and sharing information
I’m a list maker, so for me, my question would be to my friend that had had breast cancer, “What do I need to ask about radiation?” I Googled top ten things to ask your radiation (technician). I know it’s silly, but I’d go in with a list and I felt like if my list was answered then I felt I had been heard.
Helping others
Many women wanted to help raise awareness about breast cancer and shared their knowledge and experiences to help other women. Patricia, for example, notified her church that she would be happy to help and support anyone diagnosed with cancer. Some other women described having been part of fundraising activities for cancer.
Women also joined breast cancer advocacy groups or organizations to improve access to information or services and improve patient experiences, such as Saskatchewan Breast Cancer Connect or the SPCC (Sharing Progress in Cancer Care). For example, Shelley is part of a group of women who advocate for awareness of treatment side-effects and different treatment pathways. And Julia completed training through Project LEAD to become an advocate on breast cancer.
Finding and sharing information
You wake up every day and you give gratitude that you have another day, you enjoy every season because you’re never really sure are you going to see the next season. The sad thing, I suppose also, is that I’ve lost so many of my friends with the disease.
Women also created their own information resources. For example, Nalie wrote blogs and filmed videos and placed them on the Internet, and Naoual created a fashion show in Morocco for women with breast cancer. She was part of a Moroccan news broadcast. Christa wrote a book about being pregnant with breast cancer.
Many people opened up to Joanne after her theatre show about breast cancer and as a result she began to realize how happy she is. She has since stopped dreaming about what she wants to do with her life and is enjoying the life she has.