When women spoke about telling family and friends, they explained who they decided to talk to about the diagnosis, how and when. Most women also explained that it was difficult to tell others, especially children (please visit talking to children about cancer to read more about this), or other people who had experienced losses because of cancer and ageing parents. Julia and Debbra for example, found it too difficult to tell their parents and found someone else to do it for them. For Julia, it was difficult to tell others because it was part of admitting that it was real or as Kathryn said "I was telling it to people almost as to verify to myself that I had cancer."
Some women told the news to only a small number of people as they wanted to keep it private or they didn’t want others to know or speak about them. Some others, like Melissa, wanted to tell people personally.
(I think) they would look at me differently and maybe talk among themselves “Look at [name participant].” My name is [name participant], “She’s living with one breast I wonder what happened, why? How is she doing?
Malika, who recently lost her mother because of breast cancer, decided not to tell her family in Morocco as she didn't want to hurt them. And Deann's husband didn't want to upset her mom but together they decided that they should tell her.
It was really hard because my sisters and brothers knew but their children didn’t. So now I have nieces who’ve just turned teenagers and they’re not aware of their family history. I don’t know when their parents will tell them but that’ll be up to them.
Women also described certain circumstances that influenced the moment to tell others about their diagnosis. For example, Naoual waited for her mother to come over from Morocco to tell her in person. Jeanette waited until her son finished his exams; Gaye wanted to wait until her son had returned from a long period of travel. Some women, especially in smaller communities, decided to tell their close family and their children soon after diagnosis as they were afraid that they might hear the news through other people.
Well I think the very first person I told was my dad and I told him about both things. I was just leaving work to go to the doctor’s appointment to find out what the results came back as and I phone my dad on the way there. I said “I’m pregnant.” And so he was excited because I’m his first daughter and the first one to have grandchildren. He’d always wanted them so he was really excited. Then I called him on the way out too and told him… and I don’t think I handled it really well, I didn’t think about how I was going to do it with the first couple of people that I told. I just called and said “I’ve got cancer!” I think he was away on business somewhere and it would have been horrible as a parent to hear that like in that way. I definitely… but I just I couldn’t think properly.
And then for my husband, when I told him, he just came home from work. He walked in the door and I was crying. He said “What’s wrong?” and I told him “Oh I’m pregnant and I’ve got cancer too.” So like he found out both things like within like a minute of walking in the door he didn’t even have his shoes or anything off. So that probably could have been done better too. But I didn’t want to tell him on the phone I wanted to tell him in person. I think that those two were the ones that were the ones that were my first two so I said it just like that. With everyone else, I don’t remember as much but I think it was a little bit more… I think I found out actually on my middle sister’s birthday and I didn’t want to tell her on her birthday so I waited until the next day. Even though I knew and everybody else knew, I just didn’t want to tell her on her birthday, I think that’s what had happened.
Women told others the news of their breast cancer by phone, in person, in e-mails and also through social media using blogs, Facebook etc. Shelley started a family blog and was really happy with this approach and the responses they had. Margaret had planned a weekend out with her friends and was leaving the day she received her diagnosis; she appreciated the support from her friends. She found it relatively easy to tell people. Some women described wanting to deliver the message in a positive way without creating fear.
I think it’s changed our relationship. I never had to depend on someone as much as I did and that was hard. He did it wholeheartedly. He did all the running after my daughter, the cleaning of the house, the cooking and so I think in some ways it strengthened our relationship.
When it came time to tell the rest of my family, I actually just went to my brother. He lives just down the road and I didn’t really make a joke of it; it was just kind of making myself to be the…Well because, my sister-in-law had had a lump somewhere on her chest, my niece had had a lump somewhere else and so I just kind of said “Well you know so and so had a lump on her breast, it ended up being nothing so and so had a lump someplace else it ended up nothing and then there’s me.” And so I said “Well I got a lump and it’s cancer so…” and then from there, he just let the rest of the family know, because I have a large family. I just didn’t want to be phoning everybody and saying this. Word of mouth, one told the other, told the other but my husband and children were wonderful. My family the rest of my family my brothers and sisters they were right there whenever I needed them and gave a lot of support.
At my initial appointment right after the mammogram, when I was told that it was likely cancer I was by myself, but I knew the radiologist doing the reading and you know we had a good little cry in her office.
Women described undergoing personal changes in their relationships with others; they needed to learn to ask for, and receive, support from friends and family, and to find people they could trust. Some women described how their attitude affected others; they felt a need to be strong. Annie saw her father crying for the first time in her life. She also started speaking with her sister again because of her illness, and she is happy about that.
I thought, oh! I hope I didn’t kind of rule my mom’s life this way too at the end of her life. It was a shift in roles. We did a lot of healing together though, it was because we spent so much time together, it became more than just visiting.
Well like I say, I’ve got some very, very good, dear and close friends that would listen. But then you don’t want to feel like you’re whining. “Oh I feel ya, ya you know” because I’m a very private person in that respect, unless I’m lying on the floor in agony or something. But another thing as I say my, acquaintances, don’t walk across the street when you see me, because some people would and some people stopped coming. My son couldn’t visit me. Every time I phoned him he had a cold but he was crying this big, tough guy and I said “What’s…” “Oh allergies.” And he wouldn’t talk to me. He wouldn’t visit me, he couldn’t face it and I understood that, of course, but some people might have been hurt but I understood he couldn’t face it. He could not visit me. Then I would have friends walk to the other side of the street because they don’t know what to say. Just say “Hi how are you?” I’m not going to stand and say “Well I’ve got this and I have that and they cut this.” Just show that “How are you doing?” But people are scared of it and they’re afraid of it, afraid of sick people and scared of cancer because people think oh if she drinks out of that glass I’ll get it. There is still that attitude, that if you touch somebody or breathe some, they’ll get it. What my other friend who’s had… she got breast cancer, now it’s in her bones, it’s travelling, she goes up to (name city in SK) for treatment she said “You know I don’t know.” I say “I know” but yeah I had a lot of support.
My children they didn’t understand what I was actually going through, pain. They were very impatient, got their own lives run, run, run. Not that they wouldn’t have helped me but after a month of…they didn’t say but I got the impression, “Well get on with it will ya.” But working, children of their own, busy lives. I stayed with one of my daughters for a while but it wasn’t home. I wanted to be home on my own. It would have been nice to have a nurse but not the family. They handled it well, I’ve never talked to them about it really, I know they were upset, like I say, my son went to church and that’s so funny. He’s not a church goer and when I found out, I thought that was hilarious. That’s the funniest thing. He’s never been since either. He had tea with the old ladies or something, he didn’t tell me but I was getting told. I didn’t say anything but that was funny.
Other women explained how some friends and family stopped contacting them after learning about their illness. Ginette, for example, talked about how people can be afraid and that some people will stay away once they learn about your cancer diagnosis. Kathryn felt that people do not know how to deal with you, but also you don't know how to deal with them anymore at the beginning. Gaye didn't like people who felt sorry for her. She said "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 (with cancer)."
Many women also made new friends who had breast cancer. They appreciated the ability to share experiences and to have a common understanding of what it means. At the same time, it was difficult for them to lose friends with breast cancer who passed away. Debbra’s advice was to “ensure that you enclose yourself in a circle of people who are helpful for you and not zapping your energy.”
Please visit finding and sharing information to read more about shared experiences and support groups. And visit sexuality, femininity and intimacy to read more the effect on the relationship and sexuality.
Support from others
Women told us about the many different ways that they received support. For example, family and friends prepared meals, drove and accompanied them to appointments and picked up medications. Friends and family members called, visited, walked with them and just listened and spoke with them. Some of Nalie's family members shaved their heads together with her. Amanda’s partner is ‘ultra-positive’ and helps her to look at the best case scenario. Jocelyn received an anonymous grocery gift card for $100 and she loved receiving cards from well-wishers.
Some women spoke about the value of support from people far away, for example through contact with patients in other parts of the world with a similar experience.
But I have… my brother-in-law, they are doctors. My sister is a psychiatrist and my brother-in-law is a pediatrician. But usually when I had an information, a question, they were asking their colleagues or…
Interviewer: Ah yes, could you tell me how it went when you told them the news about your diagnosis?
And I met with women with cancer and who need, who really need, women with generalized cancer, but there is nobody that knock on their door to say: “Hello, how are you? Do you need anything?” Really it is very difficult. Above all, we are in a country where there is no… there are more immigrants. They have no family around and it is very difficult that someone… He is sick and he is alone.
The amount and types of support (formal and informal) varied greatly. Some women received a lot of support and others were a bit disappointed about the kind of support they received from friends or family. Donna mentioned how her family was facing several crises and her health issue took a back seat. Joanne cut out a couple of people in her life that were not supportive. Some women who didn't tell many people about their illness had less support as a result.
Women described how family and friends also struggled with the news, felt powerless, didn’t know how to help, went through hard times themselves, and did not have the same resources as the breast cancer patient.
Reactions in the community
Having cancer, along with changes in physical appearances, affected women's interactions with people when in the community. Jeanette experienced support from her costumers when she was bald and working. Lorna had an unpleasant experience in a research focus group where she felt that others were putting her down in saying that breast cancer was not that serious; she felt very hurt by that. When people said “You look so good” Melissa couldn’t help thinking that they were actually saying “You look so good for having had cancer.” Christa describes some painful situations: “I had some hard times too because I know that when I was looking at baby stuff and I was trying to be like as normal as possible... I would be looking at getting bottles and I got into a few discussions with people because I’d have to use formula (they would say) “Breast is best.” and all that kind of stuff.”
And Isla said: “We have to kind of understand that people might say some things that aren’t ideal, and you have to understand that and maybe just work to the education side of things at every chance you get, because people say some silly things.”
It’s really not; it’s not a big deal. There was through the hospital, there’s a, can’t remember what it’s called? You could go to a seminar where they teach you how to put on make-up and how to tie scarves, and I did go to it. And it was very helpful to be around other women who were going through the same thing etc., etc., etc. But I find I, I’m fine I could put on eyebrows, so sometimes it depends on where I’m going. In my local community I just go out as I am. I always wear a head scarf I’m not quite ready to go out bald but when I’m going a little bit further out and I don’t really want any questions or funny looks or anything like that, I’ll put eyebrows on. It makes a big difference, it makes a big difference but that’s about it.
And the community has been very supportive. I go into the grocery store and somebody’s always asking how I am? If I need anything? If I can do anything? Neighbours have helped. People involved with their kids, involved with my kids, they’ve given lifts, they baby-sit, so it’s been good, it’s been a very good experience. I’ve had a lot of help from friends, from family and from just the community at large, it’s been good.
Again, it’s hard. You just don’t realize it colours all of your life. I’ve actually been gaining weight which I understand is actually pretty common in breast cancer, but I’m like: I’m sick, I’m supposed to lose weight. You know people are saying “Oh you look great Carol.” I’m like “Yeah but I don’t feel great sometimes.” So it’s hard. It’s hard sometimes because when I really don’t feel well I stay in the house, and then when I feel okay I’m out and you know I have to do the groceries. I have to run errands, I have to do all that sort of thing. People are like well you look fabulous, you look great Carol you know and I’m like okay but I still don’t feel well.
My daughter and her friend and I, and I was still tired, and we were sitting in the middle of the mall.
One extraordinary tale was told regarding community support. Amanda and her friends organized a fundraising activity they called "The Ultimate Egg Hunt" – to help finance Amanda's trip to another province around Easter weekend to get her eggs frozen before her chemotherapy. Over 300 people raised over $20,000 for treatment not covered by Medicare. Joanne experienced an outpouring of support with her breast cancer diagnosis but a lot less support when her son was diagnosed with a mental illness. She created a theatre show around this theme. Joanne was surprised that some women didn't want to say they had breast cancer while it's probably one of the best publicly supported illness. She said "Cancer really opened my mind to the differences in how I see the world and how other people see the world."