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.
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.
Interviewer: You received a whole set of information?
As long as you have your facts and you have your information correct but you have to be careful on the Internet. You have to make sure your source is reliable and I guess a good source in Canada to go to is the Canadian Cancer Society. It has a 1-800 or l-888 number and there are cancer specialists there. The other place that’s really good is the Willow Support Group, they have a librarian there and sometimes they can help as well in terms of doing literature searches. The literature searches that I’ve wanted to do because of my background, I’ve always been very technical, so sometimes the Canadian Cancer Society will only do in a certain parameter where the Willow group really did some massive lit searches for me when I was looking for some specific information about tumour markers and the lymphatic system and things like that. Those are different things and then what was the other group? There’s another group the Gilda Club out of Toronto is a good group for kids.
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.
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.
I went on the Internet and I think it was maybe the worst thing I could have done. There are a lot of scary things out on the Internet and it’s hard to filter all of that, especially because I had sort of the diagnosis and I had the doctors. I had I made sure to get copies of everything, everything so I have a file with the results of everything that I’ve done and everything that the doctors have done but then you have words that you don’t understand or concepts that you don’t understand and you Google them. There’s such a wide range of information out there you don’t really know. You know there’s people that say that chemo is horrible and that nobody should do chemo and that there are other options besides the chemo and there’s a healthy diet you know certain diets, etc. All the way to “You have to have chemo.” I had to stop, I actually had to stop going on the Internet.
There are a lot of women out there with breast cancer and so I had several people who offered their experiences to me and that was very helpful. That actually helped me choose the hospital closest to me because a girlfriend of mine said that she had gone there and she gave me the name of the doctor. So I got her doctor because she raved about him. I also went to a cancer centre and they were very helpful also.
They had a lot of pamphlets, a lot of books; one of them was how to help my children through this which was a big thing for me. I didn’t want them to be too scarred by all of this. In the end I didn’t even… I had… there was a book that I could read to them but the kids are very resilient and very okay. They were okay; my oldest one probably understood more the implications of breast cancer and the fact that in theory I could die. So she was probably the most affected by it. The younger ones just wanted to know about my hair, how come I was going lose my hair and then they said “Okay and can I have lunch now?” And that was really the end of it.
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.
And anyway I just I feel that you shouldn’t feel sorry for yourself. I feel that if you want to feel sorry for someone feel sorry for the children who have cancer and haven’t had a life yet or the young mothers who, like my neighbor down the street, had 4 little girls and she passed. That is a tragedy. I find that I cannot belong to cancer groups because I went to one dinner and people were up there telling their story and you know, “Oh poor me.” I wanted to stand up and say “Look around this room we are all living, tell positive stories, tell good stories, tell jokes.”
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.
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.
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.
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.
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.
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.
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.