Finding Someone You Trust: Cancer Hope Network Advocate Highlights Programs Available for Patients with Lung Cancer

CURE Speaking Out | <b>Highlighting the Importance of Support for Patients and Loved Ones Throughout the Lung Cancer Continuum </b>

As part of its Speaking Out video series, CURE spoke with Sarah Miretti Cassidy, director of external affairs at Cancer Hope Network, about the importance of support following a lung cancer diagnosis.

Kristie L. Kahl: To start, why is it important for patients to recognize and understand the psychological effects that might come after a lung cancer diagnosis?

Sarah Miretti Cassidy: It's really important to recognize the side effects and the possible psychosocial factors that someone may face after a diagnosis. Because cancer is new, right? You didn't have cancer, and then you do. And that changes a lot of things. Cancer changes more than just our physical body, it changes more than how we're feeling or what we're able to physically do.

It also can change how we see ourselves and recognizing that that change either has come or may come is really important. One of our volunteers, Joe, talked about the need to get support, and in conjunction with a great team, right. And as he put it, and several others of our survivor volunteers have put it, doctors can only go so far, they'll give you the information that you need. They'll tell you what you need to do, how your treatment may impact you, and talking with somebody who understands psychosocial effects, who understands that nuance that you may be feeling can be really helpful, which, of course, is where, for us, our Cancer Hope Network volunteers have kind of gone through that gauntlet, they're able to talk to people about their lived experience, right. They're able to talk to them about what's going to happen. And when your doctor tells you, you know, the effects of chemotherapy may be cumulative, that means something, but when somebody else can tell, you know, I couldn't leave my bathroom floor for five hours. But you'll get through it, and you will get up again, that means something different.

Kristie L. Kahl: Why is it also important to seek support for other things, like financial toxicity or barriers to your care? Why is it important to make sure you're getting support for those aspects as well?

Sarah Miretti Cassidy: Cancer impacts more than just your health. I listened to one of those sleep apps that helps you read you a grownup bedtime story and lets you fall asleep. One I heard a few months ago has stuck with me, we're talking about the Redwoods in California. And that, you know, they're hundreds of feet tall, but their root systems only go down about a dozen feet. And the reason that they stay together and that they're able to remain standing is that as their roots grow, they intertwine. And they connect, and they provide that support. And I think that is a place to start.

Cancer Hope Network was the first in the nation to provide one-on-one peer support. And that's what we do really well. But there are a lot of other organizations who are providing a lot of other help, and information and expertise to help meet all of those other needs.

Cancer is a storm. And just like the redwoods are facing whatever storm nature throws at them, cancer is a storm that's being thrown at someone who's just been diagnosed, with a caregiver. And so connecting with other resources. We have a programs team and that team not only provides the matching and trains our volunteers and helps to provide support throughout all of the conversations somebody might have. But they also can refer to professional resources or to other organizations who are providing great support.

Triage Cancer has a lot of wonderful practical information about navigating insurance and legal forms, things you may not have known. Cancer and Careers helps with navigating work and life before and after cancer and what that means.

For many people disclosing as soon as they've been diagnosed is an important part of their courage, gathering their community. But for others, they don't want anybody to know. And so figuring out what you want to disclose can be important. You know, for people who are traveling further or who find themselves needing treatment that's farther away. There are a lot of organizations who help provide transportation. My Pilot's Pals Bag, it provides a book that helps walk people through, you know, here's a place to keep all of the practical paper and scans and notes and things like that. So there's a ton.

It's really important to get that information. But it's also important to find someone whether it's Cancer Hope Network, whether it's through your social worker, or a variety, to see what else is out there. If a patient is having a problem, if a caregiver is having a challenge, talk to somebody. You don't need to suffer alone.

Kristie L. Kahl: What are the different types of support that are out there for patients? And moreover, can you discuss some of the ones from Cancer Hope network?

Sarah Miretti Cassidy: So there's a variety of support for cancer patients. There can be financial assistance, there can be copay assistance. There can be scheduling. Many times when somebody is diagnosed, they won't realize how much help they'll want or need. And so there are groups and apps, who will let you schedule out what you need and when you need it. There's lots of professional help there. Psychological counseling. There are therapies that can be complimentary. There are a wide variety of options that are available. There's complementary therapies that whether it's many of our volunteers have found comfort in some healing in Reiki, or yoga or cancer massage. And we really encourage people to talk to their social worker, their navigator. You know, we hope that people are talking to their palliative care team to find out what other resources are available many times, you know, whether it's the cancer center where you're being treated, or a community organization like Cancer Hope Network, or others that are doing great work, talking to somebody. You don't know what you don't know. And asking and realizing, oh, this could help be really useful.

Kristie L. Kahl: What is your biggest piece of advice for a patient who is seeking support after their lung cancer diagnosis?

Sarah Miretti Cassidy: Well, of course, my first and biggest piece of advice is call Cancer Hope Network and request a match. But I also think that really is important, whether it's calling Cancer Hope, or talking to someone else. Talk to someone who has been in oncology for a little while, and talk to somebody who has the expertise that can help you find the help that you may not even realize you need. Really being as open as you're comfortable and finding someone that you trust, whether that is a group, a person, and let them help you.

Transcription has been edited for clarity.