Talking to Your Loved One About Cancer

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When a family member, friend or loved one says, “I have cancer,” it’s hard to know what to say. You may feel emotional – of course you are shocked and sad. But so is your loved one. Oncology-certified social worker Eileen Matteo, LISW-S, OSW-C, describes the things you can do and say (and not say) to be supportive in this very difficult and emotionally charged situation.

Pete Kenworthy
The older you get the more certain you are to be related to someone who has gone through cancer treatment or certainly know someone who has. For me, both my dad and my father-in-law have, and more recently my wife went through treatment for breast cancer. And when you know someone who’s going through it or maybe who has just been diagnosed, you instinctively want to help. You want to say something or do something that makes them feel better. But how do you know what that right thing is? Certainly, everyone’s unique in these situations.

Macie Jepson
You know, Pete, you mentioned make things better, but we can’t fix this. And as loved ones and friends, we really want to, don’t we? But we can listen. And sometimes even that is the hardest thing to ask of us. Hi everybody, I’m Macie Jepson.

Pete Kenworthy
And I’m Pete Kenworthy, and this is The Science of Health. And this one really applies to everyone. We want to help and never have the wrong intention, but sometimes what we’re saying may not actually be helpful despite those best intentions. Joining us today is oncology certified social worker, Eileen Matteo from University Hospitals in Cleveland. Thanks for being with us.

Eileen Matteo, LISW-S, OSW-C
Oh, thanks for having me.

Pete Kenworthy
So, let’s start with what we can improve upon. Whenever I have a friend who’s going through something, anything bad, I generally say something like, let me know what I can do to help. And if someone is diagnosed with cancer, I might say something similar, but this might not be the best approach.

Eileen Matteo, LISW-S, OSW-C
Well, usually I find that it’s better to be very specific in your offer to help. Can I get you something at the grocery store? I will pick up your kids from school today. Don’t worry about your lawn. I will mow it this weekend or tonight or whatever. So, those are the things to be very specific. Being open-ended and saying, oh, let me know what I can do, that usually falls on deaf ears. I often ask patients to make lists of people, people that they can get emotional support from and people they can get tangible support from. So, the tangible people are the meals, the rides for the kids, picking up things at the grocery store and the emotional support is just, those are the ones closest to us. So, those are important things to remember.

Macie Jepson
Yeah, that makes sense, Eileen, because if you just ask an open-ended question, they don’t want to be a burden, so they’re more than likely going to say, I’m okay, or don’t worry about it. And nothing ever gets done.

Eileen Matteo, LISW-S, OSW-C
They’ll just, exactly what you said, they are not going to ask somebody, even though they know the offer is there. It’s better when it’s a specific offer of help.

Pete Kenworthy
I remember, I talked to my wife specifically about this, because, and let’s be clear, the people who say, let me know what I can do to help have the greatest intentions in the world. These are their friends. These are their loved ones. But as my wife said, I never took any of those offers. Not one of them. But she said it was awesome when people just brought food over or just said, like you said, I’m picking up your kids from school. Just did things. It just made things easier. It was one less thing she had to think about.

Eileen Matteo, LISW-S, OSW-C
Right. People don’t think in terms of what they’re going to need in the wintertime, especially if you know what’s coming in the summertime. So, shoveling the walk, just doing it. Like I said, mowing the lawn. Those are the things that people need that they don’t think of. You think of all of everything you do every day, whether you work, you have children, outside activities, that person who is being treated for cancer has to do all those things as well. So, they need somebody to step in.

Macie Jepson
All right. We’re talking a lot about action. I want to talk a little bit more about words. And Pete, I’d love to get your response on this as well, because you likely heard some of this with your wife’s diagnosis and journey. Don’t worry, you’ll be fine. Or here’s one…I’ve actually heard this before and was stunned…Well, you don’t look sick. God doesn’t give people more than they can handle. That’s another one. Who wants to go first? Because I’d love your input, too. I’m guessing these are all bad ideas, right Eileen?

Eileen Matteo, LISW-S, OSW-C
They’re all bad ideas. They’re well intended, but they’re bad ideas. I usually cringe when I hear somebody say, God doesn’t give you something more than you can handle, because that’s putting an awful lot of burden on the person. It makes them feel like they’re a failure or they’re not a faithful servant to their Lord. But that’s not the case at all. And when somebody says, you don’t look sick, that’s a good thing, I guess. But it’s not a good thing because they don’t feel right. Typically, patients going through cancer treatments don’t feel right. And if they can keep a brave face, great, but you know, can ask them, how are you feeling today? Not, oh, how are you feeling? Or in general, but something specific. And the other thing that’s important to remember, if the person asks you, how do I look? And they have a bald head underneath that wig or a hat, they have no eyebrows, you can say you’re looking a little thin, but not as much as I thought you would’ve from the last treatment you had or something like that. Be honest. They know they don’t look like they did six months before they got diagnosed.

Macie Jepson
Pete, did you come across anything that just made you cringe?

Pete Kenworthy
Yeah, I don’t know if it was cringeworthy. I’m not used to being interviewed on this podcast. I don’t know if I would say cringeworthy, but the one thing that I thought of right when you were asking this was my wife would have preferred people go directly to her. She said there were a number of people who would text me for fear of not bothering her, and she said, that was great. Again, well-intentioned people, but it seemed less caring to her. Just come right to her and tell her what you’re thinking or ask her the questions that you have. And to be fair to people going through cancer treatment, not everyone is going to agree with what my wife says. I mean, some people may really appreciate texting the spouse and asking instead of bothering them.

Macie Jepson
Yeah. That makes sense. So, there could be some value in having a conversation, especially if you’re in touch with this person on a regular basis in saying, how do you want me to handle this? How would you like me to…do you not want me to bring it up, I won’t. But I’d love to talk to you about it if that would help you. Am I going in the right direction here? Is that conversation valuable?

Eileen Matteo, LISW-S, OSW-C
I think it can be based on the relationship that you have with the person. If you’re close to that person, definitely ask them, what do you need from me as your friend, as your sister, as your brother? Also, sometimes it’s just sitting with a person and talking about other things than cancer. The Guardians are starting to play soon, or the Cleveland Browns, or if it’s a coworker, something that may be a coworker did that was funny or something like that. It’s important to remember that their life, even though right now is about their cancer diagnosis and cancer treatment, that’s not their entire life. So, it’s good to joke with people. It’s good to just try to, even if it’s just distracting them, that’s not a bad thing to do.

Macie Jepson
So much more to talk about, but I want to go through some more specifics just in case people think this might be okay to say…I know what you’re going through. I think nobody wants to hear about other people. Right? It’s about them at the moment. Or how about this one? I can imagine what you’re going through. That doesn’t set so well with people, does it?

Eileen Matteo, LISW-S, OSW-C
No, it doesn’t, because every cancer journey is different. And there is value in peer-to-peer support where if the patient wants to meet with somebody that has the same diagnosis either over the phone or in person, we call that peer-to-peer support. But somebody’s cancer journey is unique to themselves. And it’s almost a little disrespectful, well intended, but disrespectful to say, oh, I know what you’re going through, or I can imagine. No, you can’t imagine. Or minimizing. Oh, you know, it should be okay. You didn’t have to have chemotherapy. You only had surgery, radiation, and now you’re on medication for 10 years. Every person’s journey is unique to themselves and needs to be addressed that way.

Pete Kenworthy
The other thing this reminds me of is something we actually talked about before we started recording, but referencing someone else who’s been diagnosed with the same thing and what happened to them, good or bad, taking the focus away from the person who you’re talking to is probably, again, well intentioned, but really not great for that person who it’s new to.

Eileen Matteo, LISW-S, OSW-C
No, because right now they don’t have and or they might have the capacity to really look at other people’s things, but it’s not helpful. It doesn’t have any value added to that conversation. Sometimes, and I think this is one of the most difficult thing to do, is to not say anything. You just hold somebody’s hand. You can cry with a person, put something funny on TV and laugh with that person. But sometimes it takes no words. It’s just your presence is really what that person needs.

Pete Kenworthy
You’ve given us a lot of really great thoughts about what to say in conversation, maybe better put, what not to say in conversation, and that’s really right after we hear about the diagnosis, a lot of this stuff that we’re talking about. What about later when treatment has started and things may be different and conversations make it tougher, and especially as you referenced, surgery and radiation is one thing, now you add in chemotherapy and other more extreme treatments, I guess, for lack of a better way to put it, your advice is honest and direct but gentle. Is that right?

Eileen Matteo, LISW-S, OSW-C
Yes. Yes. Because the person with the cancer knows they look different, they feel different, and they usually are acting different because first of all, they’re not feeling well. Even if they’re feeling fine, they might have lost their hair. So really, it’s just a matter of taking that person and starting where they’re at, not where you’re at. So, you start where they’re at and, you know, ask them to guide the conversation, guide the support, that sort of thing.

Macie Jepson
I think back to when my mom was going through Alzheimer’s, and I spent a lot of my time trying to pick her up and just talk about anything but. But I really do regret now not having some of those hard conversations. I think she would’ve appreciated the honesty and the opportunity to talk about that with her daughter. Can we talk a little bit about how to bring that up or learning when the right time is to really get down to the brass tacks? Should that always be something that’s patient led?

Eileen Matteo, LISW-S, OSW-C
I would say yes and no. Yes. When it is, if they’re at a crossroads with their treatment and they’re not sure which way to go, if the doctor is telling them that they need different services, palliative care, or maybe going on a clinical trial, those kind of discussions, yes, should be part of the patient, what the patient wants or what the patient needs. As far as when it shouldn’t be, is when you can offer something to them that it’s okay if you don’t want to continue with treatment. It’s okay if you’re in pain and right now you just want to center in on your pain. Those are the kind of conversations that you, again, based on the relationship with the person that you can have with them, because you’re still letting them be in control of the discussion, but you’re offering something, you’re giving them the opportunity to tell you what they want.

Macie Jepson
Mmm. The giving them the autonomy is the most important part.

Pete Kenworthy
It seems like the big theme here is never waiver from the patient. So, it’s not about the guy I knew who had cancer. It’s not about what I think about your cancer diagnosis or how I think you feel. It’s really all about that person and try to remember to have…and this is great honestly for any conversation really, even outside of cancer…but always focus on that person and what that person’s going through and really nobody else.

Eileen Matteo, LISW-S, OSW-C
And be there for the long haul. Cancer is not necessarily a start and stop type situation. Treatments can go on for years. Treatments can start and stop, but then there is surveillance. So, be there for that person for the long haul. Six months after somebody started treatment, they still might be so fatigued that they still could use somebody, you know, somebody go grabbing them some ginger ale from the grocery store. Be there for the long haul, I guess is my best piece of advice for that.

Macie Jepson
Oh, very good advice. You mentioned humor, but I’d like to go back to that, because I’d love to know more about the value of that and the best way to get to that point where you want to laugh.

Eileen Matteo, LISW-S, OSW-C
Well, I think laughter is the best medicine or can be a good medicine. And there’s not a lot of things when somebody’s being treated for cancer that are funny. But there are people, most well-meaning people that say some of the silliest things, and they say it to be helpful, but they’re not. And as the person with cancer, you take that information in and sometimes it would be helpful for a good friend, for the person with cancer to say, have you laughed today? Or did anything happen that you thought was funny or hysterical? And then that gives that person with cancer the chance to share something that’s funny.

Pete Kenworthy
You said…it was interesting because in your response there you said person with cancer, not cancer patient.

Eileen Matteo, LISW-S, OSW-C
Yeah. And I find that’s the best way of addressing somebody that has cancer. I, as a clinical person, always get into the habit of saying, cancer patient, but you have to think in terms that it’s a person with cancer. Same thing, a person with diabetes. It’s the person first. And if you can remember that, then you’re looking at the whole person. You’re not just looking at them as an illness.

Pete Kenworthy
Always great to remember and also a great way to remember to focus on that person. It’s awesome. Thanks for joining us. Eileen Matteo, an oncology certified social worker at University Hospitals in Cleveland.

Eileen Matteo, LISW-S, OSW-C
Thanks for having me.