As part of its Speaking Out video series, CURE spoke with Sarah Miretti Cassidy, director of external affairs at Cancer Hope Network, about the psychosocial effects of a lung cancer diagnosis.
Kristie L. Kahl: So we know there can be physical effects from a lung cancer diagnosis, but what are some of the emotional side effects that patients might experience?
Sarah Miretti Cassidy: So Cancer Hope Network has spent 40 years training survivors and caregivers of a wide variety of cancers, as what we call support volunteers, when we match those folks with patients and caregivers who have received a diagnosis or who are caring for a loved one who has. And what we hear over and over, it's one of the worst things that happens to you, when your doctor says those three words, “you have cancer.”
I've heard it described as a freight train, I've heard it described as rushing with (emotions). There's so many ways to describe it. But what all of it is, is a lot. And you know, there's worry, there's fear. For some patients, there's guilt. What if I had gone to get my scan earlier? What if I hadn't done this, that, the other thing? And there's a lot to process for both the patient and the caregiver?
Kristie L. Kahl: One thing we commonly hear about, especially in lung cancer, is about scanxiety. Can you talk about what this is and why patients might be experiencing this?
Sarah Miretti Cassidy: Absolutely. So scanxiety is that fear. For some, it's terror. That comes when you have a scan, a test, a checkup approaching. And, you know, that can be terrifying. You've already had one of the worst experiences of your life. And worrying that this next scan will be the other thing to happen, can be really terrifying.
And one of the things that we encourage, you know, no matter how far out you are from diagnosis, I talk with our volunteers and our survivor volunteers who have been out eight, 10, 20-plus years, and they still have it. You know, they're having it less frequently, because they're not going to their doctor's frequently, but they're still having it and acknowledging it, understanding that it's normal to feel this way. It's really important.
And then, of course, at Cancer Hope Network, we hope somebody will request a match, right? To talk to somebody else who has gone through this to work through. Yes, you may get bad news. But here's what you can do. Or it may not be bad news, right? Like you may get another clean scan. And so finding that balance between hope and realism is a really important place where Cancer Hope Network works and functions and where our volunteers can be really helpful.
Kristie L. Kahl: So, we talked about what goes through your mind after you hear you have cancer. But when you're past treatment or you have no evidence of disease, what are some of those psychosocial effects that our survivors are also feeling?
Sarah Miretti Cassidy: Survivors are feeling a lot of things. Some of them are feeling hope and delight and excitement. And some are feeling terror. And you know, going back to that scanxiety that we were talking about. And it's really important, one of the things that we talk about – a lot our volunteers are survivors – is that it's so important to acknowledge it. What you're feeling is OK. Acknowledging it is that first step to moving forward in whatever that moving forward looks like for you.
Kristie L. Kahl: This can take a toll on an individual. So how can this affect the quality of life as well for patients, whether they're going through treatment or they're off treatment?
Sarah Miretti Cassidy: Sure. It can affect quality of life in many ways. Things that used to be simple and easy, aren't anymore. Patients and survivors will find themselves having to say no to something that they want to do. During COVID, That's a whole other level. Many of our survivors are immunocompromised, and so you're having to make decisions that other people aren't having to make.
We've talked to our survivors, and many of them will share suggestions. One of the ways that a couple of our volunteers talk about dealing with the anxiety and figuring out their new normal is to be proactive. So while scanxiety really can be a really big issue, being proactive and making sure that you stay on top of your scans and stay on top of your appointments. Yes, there may be that anxiousness. But it also is an opportunity to know what's going on and to be in control.
Diane, who is one of our volunteers, talks about (how) she became an active partner in her health care and worked alongside her doctors, because it helped her to keep her conscious. And that in this moment, she's cancer free. And then, she talks about having to choose over and over, then choosing to live in that moment that she is at this moment, cancer free.
Craig, one of our longtime survivors talked about finding perspective, you know, that when you're feeling down, and it seems like you see this light coming down the tunnel, and you're like, is it a freight train coming at me, it could actually be the end of the tunnel. And I think that perspective and helping, talking with a volunteer, talking with somebody who's been there, and who really understands can be incredibly useful.
Kristie L. Kahl: To bring it all together, what are some of the signs and symptoms of the stress and anxiety or even depression that can come with a lung cancer diagnosis?
Sarah Miretti Cassidy: If you're feeling different, right, which is a very broad, very fluid sign or symptom. But if you're finding that you're feeling intense emotions, on any end of the spectrum, whether that be you know, for some of our patients, that's rage, for some of them, it's depression, it's not wanting to leave the house, or it's wanting to always be. Whatever that happens to be if you're seeing a noticeable change in how you're feeling, that can be a really important sign to talk to your care team.
That's one thing that we really encourage people to do is to partner with their doctor, their oncologist, the other members of their care team. This is not the time to hide it. This is the time to say I've been feeling depressed, tired all the time, you know, and some of that may be a side effect of your treatment, right? But keeping an eye out. There are some great apps to track how you're feeling in a day, or, you know, grab a notebook and kind of make notes each day. But that paying attention to both your body in your mental health. And if you notice your loved one for caregivers, if they noticed their loved one, suddenly changing. They're suddenly incredibly impatient. Whatever those changes might be. Talk to the patient, talk to your loved one, or talk to the care team and say, “I have noticed this, is it something?” Because it's better to ask and be told or to realize, no, this was just a bad day than it is to let a bad day turn into many bad days turn into something more serious.
So really, ask ask ask. Reach out, get help. Talk to somebody.
Transcription has been edited for clarity.