Family and Friends
When a person is going through treatment for breast cancer, family members and friends often feel unsure about what to say, what to do, or how best to support their loved one. They may worry about saying or doing the wrong thing and unintentionally adding to the person’s burden. While there is no ‘one size fits all’ way to support someone undergoing treatment for breast cancer, the people we spoke with told us what they found helpful or unhelpful and described the kinds of support they appreciated the most.
“Drop a Note, Send a Text”
Many of the people we spoke with appreciated receiving cards, text messages, and emails from family and friends, wishing them well and letting them know they were thinking about them. As Carrie said, just “drop a note, send a text.” This kind of communication works well because, as Lisa S. suggested, it says, “‘Hey, I’m thinking of you’…[and] that’s not intrusive.” Kerry said she understands that “some people don’t want to have their privacy invaded,” but she, herself, was “very grateful…when people did reach out.” Nikki described how “people were helpful…sending me a card, praying for me, knowing that they just would reach out and shoot me a text with a heart on it, like just feeling there was a whole community.”
Becky saved every card she received.
Becky saved every card she received.
More than anything, the cards. I've saved every single card that anyone sent me. And just the text messages of, “Thinking of you, I love you, I'm here for you if you need me.” You know, just to know that they're thinking of you. It didn’t have to be anything more than that. I didn't expect people to pick up the phone all the time. I didn't want people to do that because, again, it felt like I had to find energy for that. You didn't have to find energy for a text message.
Chelsea displayed her cards on her bedroom wall.
Chelsea displayed her cards on her bedroom wall.
I had a lot of cards, and that was nice, just seriously.
Like in the mail?
In the mail. And I remember…
Wow. The old-fashioned way.
The old-fashioned way. And a lot of them were funny or very touching. You know, I can remember a couple of them in particular that made me cry. They were so sweet, a couple funny ones. I even received one or two from a friend of a friend who had also had cancer. So, I didn't even know them personally, but they were like, "Oh, I have cancer, and now [NAME] does," like, "I want to reach out to this person." So, that was awesome. You know, I had them all on my wall in my bedroom for at least six months. It was just like a nice reminder.
Be a Good Listener
Many of the people we spoke with underlined the importance of family members and friends being good listeners. As Bobbie said, “sometimes just talking to somebody, it makes a difference.” Being a good listener meant that family members or friends were there for them when they needed to talk and were willing to listen, even when the conversation covered difficult subjects like illness or death.
Zulma stresses the importance of talking and listening within the family.
Zulma stresses the importance of talking and listening within the family.
I tell women, don’t be silent, don’t stay quiet, speak with your children, with your spouse. They also have to let out what they are feeling in those moments. And I know, up to today, I know many husbands, many spouses of people who are going through this, that many times the man is very macho or doesn’t like to talk about those things. “Ah no, no, not with me. No. Don’t talk to me about that. Go to your doctor. No, no.” That is wrong. I mean, they have to talk about it. Sit down, speak about it, talk about it, women don’t stay silent.
Les digo a las mujeres, no callarse, no quedarse calladas, hablar con sus hijos, con su esposo. Ellas tienen que sacar también eso que se siente en esos momentos. Y yo he conocido, hasta ahorita, yo he conocido a muchos maridos, muchos esposos de las personas que están pasando por eso, que muchas veces el hombre es muy machista o no le gusta hablar de esos temas, “Ay, no, no, conmigo no. No, no me hables de eso. Vete con tu doctora. No, no.” Eso está mal. O sea, tienen que hablarlo, sentarse, hablarlo, platicarlo, ¿qué sientes? ¿Qué necesitas? ¿Qué quieres? O, ¿qué esperas de mí? No sé. O sea, tienen que platicarlo, no quedarse calladas las mujeres.
Kim says she was helped by friends with whom she could talk about dying.
Kim says she was helped by friends with whom she could talk about dying.
What was most helpful for me was a group of friends. I had--my closest friends--you know, so it turned out to be who understood I needed to talk about dying, who understood I need to talk about my fears. And they did not try to give me false reassurances, never ever, ever, you know? I mean, they might--one of them, whose partner actually had cancer, would say sometimes she'd just listen, you know, and shake her head. And sometimes she'd say, “Well, and you never know.” And I'd say, “Right, you don't know one way or the other, you know?” That's the unnerving part of this. But they were really able to just listen and not have to make it better for me.
Peggy’s family and friends weren’t comfortable with conversations about death.
Peggy’s family and friends weren’t comfortable with conversations about death.
Sometimes my friends, like, when I want to talk about, you know, they're like, don't talk like that. You'll be an old lady when you die.
How does that make you feel when people do that to you?
I get it, because I don't think they want to talk about it. Then sometimes I feel like, this is the feeling I'm feeling. You know, and they talk about retirement. And I'm like, I might not make it to retirement. That's a possibility. But then there's a possibility I will. So, I'm still planning for retirement. I'm still paying into my retirement accounts and-but who knows.
Avoid Giving Advice and Making Judgements
Some of the people we spoke with found that well-meaning family members or friends would offer them advice or make unwelcome comments about their decisions. These interactions were generally unhelpful, insensitive, or both. For example, Alison didn’t appreciate being described as someone “who doesn’t take medical advice” within her family because she declined an aspect of treatment that she decided wouldn’t benefit her. Debbie wanted those around her to know, “I don’t need your advice. I don't need you to give me your opinions. What I need is for you to listen to me. Don't talk to me. Listen.”
Asante cautions against giving advice.
Asante cautions against giving advice.
Don't contradict what their doctor says to them. You know, like if your doctor says you should have this type of chemotherapy, don't say, "Well, I heard that this person had this type of ..." No. Just listen. The best-, the best support you could give is the support that just by being there and listening, you know.
Yeah.
Because giving advice, even me, till this day, I have to tell myself, just listen. You know, because you can't give advice to someone who doesn't want to hear it, first of all. And your might-, your advice might not be the right advice.
Alice felt much of the advice she received was simplistic.
Alice felt much of the advice she received was simplistic.
Everyone wants to tell you how to cure your cancer. It's just amazing. “Cut out dairy.” “Just eat kale.” You know, there’s so much good advice. But if that were the case, then nobody would have breast cancer. We would all be not eating dairy and just eating kale.
Avoid Sharing Other People’s Cancer Stories
People we interviewed were often distressed when family members or friends offered up stories of other people’s cancer experiences. Negative or alarming “horror stories” about other people’s experiences were particularly unhelpful.
Linda suggests alternatives to talking about other people’s cancers.
Linda suggests alternatives to talking about other people’s cancers.
People are very different. And I've come across this especially with people who are in grief situations. You don't know what to say, and I learned that, finally, with my cancer that it's just better sometimes to say nothing. You can say, “I'm here.” You can say, “I'll sit here with you. I'll hold your hand.” Sometimes that's better than saying, “Well, you know, my best friend's sister had breast cancer and she just went through this, and she did duh, duh, duh, duh, duh.” I want to tell you that all cancers are different. Your cancer is very different from the next person's and if you don't want to hear that and you don't want to hurt people's feelings, you should just say, “Well, I am so happy that she's doing well” and move on with your conversation. You don't have to listen about to everyone's aunt or uncle or whoever had cancer because all cancers are different and you need to focus on yours.
Becky says other people’s stories are never relevant to your situation.
Becky says other people’s stories are never relevant to your situation.
I did get tired of hearing other people's stories about people they knew who had cancer. I think going through this experience made me realize how unique each person's treatment and journey is. And you just, you can't realize it until you're directly connected to it, whether it's you or, you know, your daughter or your mother or something like that. Just how unique each person's treatment and, and path is, so when someone would say, “Oh my friend had that and it ended up being no big deal. It was a, you know, it was a lumpectomy and then everything was fine and they moved on” I never want to make anyone feel bad about something and say when they're trying to be helpful. So, it was a lot of nodding and smiling to those kinds of stories. So, I didn't find that very helpful because it's impossible to explain to each and every person just how unique your situation is.
Acknowledge Cancer, and also Treat People Normally
Some of our participants expressed frustration with the way other people responded to their cancer. As John said, “I’m going to be OK....Don’t feel funny around me.” Several participants described hurtful interactions that they felt minimized or made light of their illness. Others said how much they disliked being pitied. As Alison explained, “Concern is great. How are you doing? That's concern. I don't want somebody to be like, ‘Oh, poor you.’” Carrie wanted friends and family to remember that people with cancer don’t always want to “connect” because sometimes people with cancer are “just done” with the topic. Amy was upset when a family event was cancelled because of her cancer when she felt fine and was looking forward to attending. Learn more about people’s experiences with Support from People and Pets.
Precious dislikes being told she looks good despite having metastatic cancer.
Precious dislikes being told she looks good despite having metastatic cancer.
One message I would give, I guess, if there was such a thing as a general public, I would say, please don't say to a person with metastatic disease, ""You look so good." Or “But you look so good.” I don't like hearing that from anybody. because it negates the fact that I do have the disease and that I'm living with it. So, I prefer not to share-give information--like, you know, I would share with someone, “I'm there for you. “I would say things like that, like “I'm there for you if you need to just talk sometime, or you know, you want to go somewhere or do something that has nothing to do with your illness, just call me and let me know. I'll be glad to be there for you."
Sharon didn’t appreciate a friend joking about her reconstructive surgery.
Sharon didn’t appreciate a friend joking about her reconstructive surgery.
And I would also like to add that people that say that you get a free breast, you get a free boob job when you have reconstruction, I know what they're saying. But it's like, there was nothing free about this boob job I got. I paid a very high price for it in more ways than one. So, I hate that when people say that, “Well, you got a free boob job.” And you hear that a lot and it wasn't free.
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They're not really thinking about what you're going through and the emotional impact that losing your breasts has on a woman. I mean, I wanted the cancer gone. I wanted it out of there. But still, it was, it was an emotional time. I actually had a friend who was a guy say something to me about, you know, “Where are you going to get a new rack?” or something like that. And I just, it, I looked at him, and I said, “How would you like it if you had cancer in your ball sack and you had to have those replaced?” He got really quiet. He didn't know what to say to that. But, I mean, honestly, you know, I don't actually fault people for that. They don't know. They don’t, you can't know what it feels like to lose your breasts unless you lose them. You just can't. And so, I am trying to educate people a little bit at a time, as gently as possible. I wasn't so gentle with the guy, but, you know, he was a guy so.
Nikki has a terminal diagnosis but doesn’t “want the pity.”
Nikki has a terminal diagnosis but doesn’t “want the pity.”
I don’t want the pity. I don't want people to be sad. I want you to be there if I need an ear. But I guess knowing what is going to encourage that person and just doing that. So, for me, it's prayer and living life. Like, ‘what's next? When are we going camping? Can we go fishing? Do you want to go play basketball? Let's go on a girls' weekend.’ Like, ‘what's next,’ not ‘what's right now? What's the bad?’ Let’s—I don't know. I guess that's what I would say is just don't pretend their life has changed because that—that's what I didn't--I don't want my life to change. It's not. I'm not allowing that to change unless I allow it.
Sometimes Ask First, Sometimes Just Dive In and Help
The people we spoke with shared a range of perspectives on receiving practical help from family members and friends. Several people encouraged family members and friends to simply ask the person what they need. As Alice put it, “Ask your friend or your family member what can you do for them….Often it’s something as simple as, ‘Let’s go for a walk, or walk my dog, or cook me a meal.’” Asante noted, “There’s no script...so...ask them how they want to be supported.” Amy said she just wanted people to “be present” with her, to “show up” and do whatever together.
However, while asking the person what they need might seem obvious, several of our participants pointed out that many people are uncomfortable asking for, and accepting, help. For this reason, it can be better to make specific suggestions rather than open-ended offers of help. Preparing meals, helping with laundry, housework or childcare, and accompanying people to medical appointments are ideas that came up often in our interviews. As Sharon put it, loved ones “just have to kind of figure [it] out. Something is better than nothing.”’
Amber says she never asked for help but really appreciated what her co-worker did for her.
Amber says she never asked for help but really appreciated what her co-worker did for her.
I had so many people that told me, “I'm here for you. If there's anything you need from me, just let me know.” Well, I don't ask people for help. So, I was never going to ask anybody for help because that's not who I am. And so, what I noticed though, is the selfless people that, I had a co-worker, and him and his wife, they're just a co-worker, and they brought me a tray of like frozen meals from Sam's Club and said, “here you go.” They didn't ask if I wanted it. They go, “Here you go. This is for you, [NAME], and [NAME], so with the days that you don't feel like cooking.” I didn't ask for it. And like I said, I wasn’t, I would not ask anybody for help. And so, I tell people, don't just tell people you're there for them and you'll be there for them. You know, stop by, let them know that you care. If you-, as far as the meals, yeah there were days that I did not feel like cooking so those meals did come in handy – that we could just pop it in the oven and they were done. So yes, being an ear to listen, but also showing up when it's least expected, that helps. That really reinforces that somebody is really there for you. Because it's very easy to say, “I'm here for you. If you need anything call me.” But if you're not a person that asks for help, you're never going to utilize that.
Sarah says, “Find something to do and do it.”
Sarah says, “Find something to do and do it.”
Don't wait for the person to tell you what to do. Find something to do and do it. When--you know, we have this tendency, like, “What can I do to help?” Well, that's just something else you're putting on me to help decide. I just got diagnosed with cancer. Don't ask me what you can do. I got too many other things going on. Find something to do and do it. If it's wrong, then it's wrong, you know, in, in, instead of it, instead of it being nothing. So, cook a meal and bring it, you know? Bring flowers. What, whatever you can think to go clean up their front yard, you know? Whatever it is. Just show up and do it. Do not ask permission. “Can I do this for you?” Just go do it. Go take out their trash for them. If it's wrong, then it's something instead of it just being nothing.
Janet S. suggests ways to help someone who doesn’t have a good support system.
Janet S. suggests ways to help someone who doesn’t have a good support system.
I would say to somebody that wants to help someone that doesn't have a lot of depth in a support system: find out the days that they're going for their treatments, or their doctors' appointments, and just make arrangements to drive them. Not so much ask, just say, “What days are your treatments?” And whip out your calendar and find days that you can take them. Come in and do house cleaning, laundry. Depending on where, you know, “You're kind of out in the sticks right now, so we don't get delivery of food. We’re all the way up.” But if you're in an area and you know the person's address, call Domino's and have a pizza delivered to the house one night. You know, it doesn't have to be anything grand.
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Just come over and do my laundry. You know, especially for those folks that are not fortunate enough to have support systems. Doctor’s appointments, food, laundry, grocery shopping, picking up medications, helping them tap into a support group, if that's what they're interested in.
Lisa S. thinks it is best to be specific when offering help.
Lisa S. thinks it is best to be specific when offering help.
I less appreciated people that would ask me, “What can I do for you?” I always appreciated more--and that's why the meal train was great because they just came over with dinner. They didn't say, what, what can I do for you? Don't, I’m never going to say--nothing, I'm fine. Everybody wants to be a martyr. It's very hard to ask for something. It's always easier to receive. And people with cancer always want food. Food is great. You know. Or you can always come over and say, ‘Hey, do you need that cat litter changed?” “Yes, I need that cat litter changed.” “Can I pick up some milk for you?” “Yes, you can pick up some milk for me.” So, specifics are really important. Giving a specific. Yeah, “Do you need your kids picked up from school?” “Yes, I need my kids picked up from school.”
Since different people with cancer will want different things from friends and family, Asante noted it’s important not to worry too much if you get it wrong, and “forgive yourself for not know how to help.”
Cancer Survivors Need Support Over the Long Haul
Several of the people we spoke with said that, while family members, friends and others were supportive through the initial part of their cancer journey, this support tended to diminish over time. Some pointed out that their need for support didn’t end just because they were no longer in active treatment. Others, like Steven, encouraged people to stay connected. As he said, “don't be afraid to call or visit...I was pretty much home alone all day long, every day.”
Michelle reminds us that people still need support after treatment ends.
Michelle reminds us that people still need support after treatment ends.
Remember that even when your loved one has finished their treatment, they're still not over it. Like I might look fine. Like you would never know everything that I went through last year. But emotionally, it's still there. And physically, it's still there. Just know that once their treatment is over, they're not, they’re not done. And continue to ask about it. Ask them if they want to talk about it, because not everyone brings it up like me. I want to talk about it all the time. Because for me, it directed me to a different part of my life that I really am passionate about. But most people don't. But just knowing that you still care about it is huge, and you care enough to ask.
Many of the people we spoke with expressed deep gratitude to the people who supported them. Amy was “grateful for everybody who has been involved…in the way they were able to.”
Maria H gives thanks to her family.
Maria H gives thanks to her family.
Well, first, I would thank them. I give thanks to my family. I don't get tired of that. I tell them, thank you for having been there. Thank you for every minute that you tolerated me, for caring for me. To my friends, the same, if they were close or far, to my sisters. In fact, when I had my surgery, one of my sisters from Puerto Vallarta came for a month to take care of me and to be with me. She left everything that she had to come.
Bueno, primero, yo les daría las gracias. Les doy las gracias a mi familia. No me canso. Les digo graciaspor haber estado ahí. Gracias por cada minuto tolerarme, estar al pendiente de mí. A mis amigos, igual, estuvieron cerca o de lejos, a mis hermanas. De hecho, cuando fue mi cirugía, una de mis hermanas de Puerto Vallarta vino por un mes a cuidarme a estar conmigo. Dejó todo lo que tenía para venir.
To learn more about the metastatic experience and ways people with a terminal diagnosis found support, see our summary on Living with Metastatic Breast Cancer.