Those with Breast Cancer
Receiving a breast cancer diagnosis can be stressful and frightening. People in this situation may feel overwhelmed, lost, and unsure of themselves. The people we spoke with offered advice and messages of encouragement to others with breast cancer, based on their own breast cancer journeys.
This is About You
One of the most consistently shared messages from the people we spoke with was “this is about you.” This message was key because, as many participants pointed out, it is easy to get caught up in other people’s needs and emotions. As Katrina put it, “when you get cancer, that's your time to focus on you." Or as Carrie told us, “there's not one way to be, to feel, to deal with it....We all have to find our own way.”
Sarah says be sure to keep your focus on yourself: “You got this.”
Sarah says be sure to keep your focus on yourself: “You got this.”
What kind of messages would you give to a woman who is just coming down your path? She's 19 months behind you.
“I'm sorry.” That's what I would say. “I'm sorry this is happening.” I would say, “You've got this. You've got this. You're going to get a lot of advice. Don't take all of that. Sort through it for yourself. Do what you can. Don't do everything. Don't, don’t let other people make it about them. You just got a cancer diagnosis. This is about you. If you have friends who are very, very, very, very upset that you have cancer and you're finding that you have to comfort them because you have cancer, don't do it. That person has to be cut out right now. You've got way more important things to do than to make sure that they're emotionally OK. Make it about you because it is.
Trust Yourself
Another widely-shared message from the people we spoke with was “trust yourself.” As Denise noted, there is no right way to cope with breast cancer: “everyone handles it differently.” Nikki said, "whatever you feel is not wrong...whether that's angry or sad or scared or in denial. It's not wrong.” Chelsea pointed out that “People get paralyzed by all the choices that they have to make…Just remember that…whatever decision you make, it will be the right decision for you at that time.” Sharon said she often reminds other women that they are stronger than they know, even if they don’t feel strong right now.
Merle notes that it’s important to trust yourself on your journey.
Merle notes that it’s important to trust yourself on your journey.
This is where I think each patient just really needs to figure out what is going to work for them. And that, for me, I mean, that also changed, depending on where I was in my journey.
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I think it's most important for people to trust themselves on this journey. I think so often people give away their power, actually, or for people to just say, I want the doctors to tell me what to do. I understand sometimes that that is what people choose. And that's absolutely OK. It was not how I navigated mine.
Alison advises others to be led by their own values.
Alison advises others to be led by their own values.
Figure out what matters to you. This is the most important step that you can take when you first find out that this is happening. What matters to you? Use that as your frame to guide all your decisions. If what matters to you is being around for your grandchildren and your children are three and four, you may make different choices than I make as somebody whose children are grown and may not have grandchildren. And, you know, I am living for me and I am living, and you know, for my husband and the day, and whatever. Know what matters to you. Everybody walks a different path, even with the same disease, because our priorities are different. Our choices should be different, they should reflect our priorities. Too often they don't and people get treatments that don't fit what they want.
Be Kind to Yourself
Many of the people we spoke with emphasized the need to be good to yourself. Ronnie suggested, “You have to be very, very, very kind to yourself and not put the same demands on yourself that you would normally put.” Janet S. said, “Don't be stoic. Don't try to…take the high road on this.” Zulma encouraged other people not to “be afraid to express what you feel or what you would like or what you need.” And Kawanna counseled others with breast cancer to “be patient with yourself. Time heals. It really does.”
Ginny describes the things she did to pamper herself.
Ginny describes the things she did to pamper herself.
Whatever makes you feel good, give yourself license to do it. For me like I said, the first round of chemo, I felt kind of like I'd been beaten up with a bat.
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And so for me, getting a massage. And I think I got chiropractic in there, too. I just had this regular sort of, taking a bath every day. Feeling like I could close work if I felt done in. I didn't take a lot of work off but I gave myself license to lay low if I needed to. And just doing things that made me feel good and didn't tax me. That was my way of pampering myself.
So the advice would be to pamper yourself.
Yeah. Exactly. I mean, you're going through a lot, mentally and physically. And whatever you can do that, that makes life more enjoyable. Yeah. Yoga, massage, anything that’s, a hot tub, anything that's a pamper for you I would recommend, because you deserve it. I mean, you're handling a lot.
Let Others Help You
Another commonly shared message from the people we interviewed was, “learn to accept help.” Breast cancer most often occurs in women, and many of the people we spoke with found it difficult to transition from their usual roles as caregiver to being someone in need of care from others. Kerry admitted, “I still don’t know how to accept things….It's still awkward for me when somebody wants to help me.” For Sarah, “Learning to let somebody else do for me…that's…the big lesson of cancer." Becky agreed that, if others are “offering help, take it” but added that, “if it's help that doesn't actually help you…then don't feel bad about turning it down.”
Janet B. encourages others to accept help when it is offered.
Janet B. encourages others to accept help when it is offered.
Let them help any way they want to help. If they want to come over and cook you dinner, let them cook you dinner. If they want to help clean your house or go to the store for you or do your laundry, any little simple thing that they say, “Can I help you do this? Let them do it.
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My neighbor would say, “Let me come, let me come. Is it Okay if I come over tonight?” And “Let me cook dinner for you.” And we would say, “You know what? That'd really be nice because we’re both exhausted. We're both tired. We both are just, you know, really need the help.” And I would encourage that with anybody that offers for you to do that, you know.
Merle says let the people in your life take things off your plate.
Merle says let the people in your life take things off your plate.
People going through cancer you know, to the best of their ability, should allow themselves to receive support and ask for support. I think sometimes that can be a really hard thing for anyone. But especially going through something like this, I think it becomes even more important. And that there are so many people willing to help in terms of resources, you know. Work those resources. I had to do a lot of research on my own, but, for as much as possible, like, delegate out. And, I mean, this might be a part of like, if people are fortunate enough to have friends that are willing to help them make phone calls. Or even for me, because I was a stage 4 diagnosis, I knew that I was eligible for Social Security, but that's a whole chain of paperwork. And everything's a chain of paperwork. And that can be really overwhelming when you're also dealing with a pretty intense, physical disease. So, I would just say that, for as much as possible, if you have people in your life who can take some of that off your plate, let them.
Build a Support System
People we interviewed noted that help can come from family, friends, neighbors and colleagues including experiences with Support from People and Pets, and Support Groups. They also described getting support from in-person or internet-based support groups, others who have been coping with breast cancer, religious or faith communities, and mental health and complementary health providers (see our summary on Religion, Faith & Spirituality). John emphasized the importance of “surrounding yourself with positive people,” and June wanted others to remember that, “You need a support team.” Zulma said she tells other people “to not stay silent, to share with…your families…about what is happening.”
Victoria suggests that it is sometimes easier to talk to people outside of your family.
Victoria suggests that it is sometimes easier to talk to people outside of your family.
There are difficult moments, but you can get through with, well, talk with someone. That helps a lot. Talking with someone, letting go. Maybe with our own children or spouse, maybe we can't let go. But you could look for another-, another, alternative so that she can always feel comfortable.
Y hay momentos difíciles, pero se pueden superar con, pues, platicar con alguien. Eso ayuda bastante--platicar con alguien, desahogarse. Quizás con nuestras propias hijos o pareja quizás no nos podemos desahogar. Pero podría buscar otra alternativa para quella siempre se sienta cómoda.
Amy says build a support system.
Amy says build a support system.
You've got to build a support system, whatever that support system looks like, and be present with yourself. You know, give yourself time to grieve the situation if that's what you need to do. Try not to stay there as much as you can, and utilize all the support systems that are available to you. There are usually non-profits that can give you mental health support, that can give you help with any of the diagnostics that you need, that can give you help with your transportation issues. It's not a let-down to take help from people like that or from organizations like that.
Precious describes the benefits of support groups.
Precious describes the benefits of support groups.
I would just encourage anyone dealing with metastatic disease to be a part of, for instance, METAvivor. Get the support that you may want or need through organizations like that. And ask for resources. That-If you don't have access to enough resources, ask for more. I, personally, am not one to go on the internet and do a whole lot of research. But I'd rather have people tell me stuff. And so, you know, that's why I go to the support groups. Because once you're there, then they usually have all this information already gathered. And it just helps you to just be there, and they can support you in what you need to know about financial help, all kinds of help. So, I personally encourage everyone to be a part of a support group--at least one.
Kim found it helpful to read others’ stories about cancer.
Kim found it helpful to read others’ stories about cancer.
Actually, another thing that helped me a lot was I went online, and I read a blog. Actually, it was a blog of a man who had cancer. I can't even remember what kind of cancer, but he was just writing a very articulate blog about his daily experiences and emotions. I found that really helpful. It was just kind of honest and upfront. I read some books by people - actually a woman who was dead that had written about her cancer experience. I found that helpful. I don't think all books would be helpful to all people. I think it's finding what's right for you.
Advocate for and Educate Yourself
Many of the people we spoke with underlined the importance of advocating for yourself to ensure you get the care you need. John said, “It's just really important that you advocate for yourself with your doctor….Tell your doctor what you want. Don't let them dismiss your concerns.” Michelle pointed out that “If you are not your best advocate, no one else will be." Debbie urged others, “If something doesn't seem right, question it. You don't feel comfortable with something, question it, because you're in control.”
Becky underlines the importance of getting your questions answered.
Becky underlines the importance of getting your questions answered.
Go in with like a handwritten list of your questions or concerns, and you put it in front of them when you walk in and say, “These are all the things that I need to talk with you about today before you leave here.” I mean, the mental and emotional side of this is, at the very least, equal to the physical side of this, if not greater. And if you don't feel like you're being supported or listened to by your doctor. My opinion is your chances of getting better are going to be way less.
Janet B. says, “learn to speak up.”
Janet B. says, “learn to speak up.”
As a patient, you have to learn to speak up. Don't take the first answer you get. Do more research on your part as a patient. Just because we had only one plastic surgeon here in town, don't just stick with him because he's local. Do more research. Do something else because this is your body. This is not his body. If you're not happy, go to another doctor. Go to four doctors. Go to five doctors until you feel like this doctor is the one that's going to want to help you.
Lisa J. says to find the right doctor.
Lisa J. says to find the right doctor.
It's very important that you know how to advocate for yourself. Take it step by step. It's cliché, but it's still true that you have to be your best advocate, or you find someone who you trust to be your advocate. There's no dumb questions. There's no stupid questions. If you don't feel comfortable with somebody, and you're getting that sense that this isn't a good fit, your insurance company has a network. If you don't want to look it up online, you call the customer service, the member services, and you find somebody else. It's good to document; this is what I went through, this is what I need, this is what I'm feeling, and be able to say your story in a way that people can hear you. If that makes sense.
Asante says talk to people, do your research.
Asante says talk to people, do your research.
I think as a patient you have to do your research, too. You have to be informed so that when you do go to the doctor and they're telling you something that you don't understand, you have to do your own homework.
Yeah.
It's as much their job as it is your job to be informed and to educate yourself. And I think the only way you can do that is not by Google searches because that will terrify you. I've done that. I've been there. But just really talking to people in the industry, talking to survivors. You know, talking to nurses. Nurses definitely know their stuff, especially oncology nurses. And if you have a nurse navigator – I don't know if a lot of hospitals have a navigator. A person who, a point person who is going to lay out all of your treatment. But really, talking to each other about it. Is-, I felt that that's been the most helpful in seeking out people and seeking out organizations that are on your side, on your team.
If you visit our summary on Advocating for Yourself you can learn more about what people we interviewed said about advocacy.
Bring Someone with You to Medical Appointments
People we interviewed emphasized the importance of bringing someone with you to medical appointments, because this makes it more likely you will get the information and care you need. As Debbie put it, someone else can remember all those “terms you’ve never heard or wanted to hear” that are “coming at you.”
Merle describes the importance of having a friend at appointments.
Merle describes the importance of having a friend at appointments.
And I actually had a friend—I mean, lots of really great friends—but one friend in particular who was like, “are you bringing an advocate with you?” And I was like, “What?” It didn't even occur to me. And just to even have people in my life just say, “hey, this might be a helpful thing.” So, I started bringing friends with me to my appointments. I thought that was a great suggestion, because it is true. And some doctors will actually outright tell you, “You're not going to remember everything that we tell you, especially if you are going through something that's traumatic or jarring.” And so, bring support.
June notes how important it was to have someone with her at the doctor when she was scared.
June notes how important it was to have someone with her at the doctor when she was scared.
You got to keep asking questions. And don't, doctors are wonderful. But they're trained to tell you this, this, this, and this. Ask questions. Write it down. And take somebody with you because you're all stirred up. And you're going to forget, or you misunderstood. You misunderstood. I know I have because I've had my daughter or [NAME]. I've had my daughter or somebody with me. And they said, “No. This isn't how it went. It was like this.” And then you have to stop and think a little bit because you're scared when you go in there by doctors.
Keep Moving Forward, but at Your Own Pace
Staying focused on the present helped many people get through treatment and come to terms with a life that includes cancer. Others, like Amy, found it important to “give yourself time to grieve the situation” while at the same time trying “not to stay there” for too long. Many said that, looking back at their life before diagnosis or worrying about the future, did not help them deal with their current reality. As Peggy put it, “you don't want to deal with it, but you're going to have to….Just try to live and cope with it.”
Linda realized she has to live her new reality.
Linda realized she has to live her new reality.
I kept saying to my husband, “I just want my, my life back. I just want my life back.” Because I felt like my life was careening out of control and I had lost some of that control. I felt like I probably had lost all of it, and how was I ever going to get this back and how was I ever going to be able to fight this cancer if I didn't get some manner of control? And what I finally came to realize was that I was never going to get that other life back. I was now on a different path and that it was up to me to walk that new path. And yes, my life would change, but I would stay the same, or maybe I'd be even better.
Precious says to make the most of your life.
Precious says to make the most of your life.
For the person that has metastatic disease, as I said before, I would say again is that live your life to the fullest. Make sure that you have no regrets. Do anything and everything that you want to do. Don't put off for tomorrow what you really can do today. And be gentle with yourself. Make the changes you need to adjust to your side effects. But don't give in to your disease. Try to take control by having friends love on you. And you take the necessary medications, and don't give up too quickly on medications and things that may work for you. Do the acupuncture. Do the meditation. Do the relaxation things. Do anything, do the medical marijuana. Do anything you think is going to help you. Just don't give in or give up to the disease. Don't let it take over your life. You take control and realize that this is one aspect of your life, but it's not your whole life.
Lisa S. accepts that things change and “loves the new.”
Lisa S. accepts that things change and “loves the new.”
You can't mourn the things that you might not get in the future. You have to feel good for the things that you had. If you start mourning the things that you lost, it's just a bad place to be. It's really a bad place to be because you'll always think that you should have them all the time. Well, you know what? Things change. We lose our age, right? So you can't be 20 forever either. You can't be someone who says, “Oh, well, I wish I had my black hair back.” You know, I don't, in a sense. And so, you have to love the new. You have to love the next process.
You Are More Than Your Cancer
Several of the people we spoke with reminded others that a breast cancer diagnosis doesn’t define you or your life. It is not you. It is something that happened to you.
Chelsea says that not everything in her life is cancer.
Chelsea says that not everything in her life is cancer.
It doesn't have to be all cancer all the time. You know, I still went out in between my surgeries, you know, for drinks with friends or out to dinner. You know, it wasn't like I suddenly became a hermit.
Casey explains why getting “a woman’s cancer” does not change his transgender identity.
Casey explains why getting “a woman’s cancer” does not change his transgender identity.
I have a woman's cancer. I'm not a woman. How did I get a woman's cancer? Now you can start going into, if you're not that strong, you could go into another weird, ugly place. That this is my last drive. I went through this all my life. And now I have women’s, a female cancer that could, could not, kill me. Who am I now? Am I, so I am still a woman? But I don't define [myself that way], you could go into a really weird place. And I could see it happening. They just have to understand that it's not, and, it's also educating the medical field, to let them know that you're still the same person. You're still transgender.
Our module on Cancer Risk that Runs in Families also includes advice from those with elevated cancer risk.