Boiling Down Self-Advocacy For Testing, Second Opinions and More During a Lung Cancer Diagnosis - Episode 4
As a part of its Speaking Out Video series, CURE® spoke with Terri Conneran, on behalf of KRAS Kickers, about networking during a lung cancer diagnosis.
Colleen Moretti: Some patients may feel they can only be involved with one advocacy group — can you debunk this myth?
Terri Conneran: It's so important to realize that you can't get all your resources from one place. You need to start out and just get connected with other people. And so, for myself, I wanted to see the different resources I had and so I went and got involved with more than one lung cancer organization. Because if you're just giving me one set of information, I have no way of checks and balancing it. It's the same way you don't date the first person and marry the first person all at the same time, right? You kind of need to be able to get a little checks and balances and each place has a different sort of feel. So, it's okay to have your own individual cross-pollination. Because I wanted to get the information from the different places because they just that's how it works. You don't only have one friend, you have a friend that you want to go see movies with, you have another friend that maybe you want to politics or weather or about the kids. So, you need to connect out through the app and get that sort of information.
Moretti: What might patients be missing out on if they don’t expand their network?
Conneran: You're missing out on more friends. Really, when it comes to cancer care, and I mean, the self-care and the caregiver care, you need to get those sorts of connections. It's like a stool, one sticks not gonna hold that thing up. You need to be able to have a brace and through that brace and those different cross communications, you're going to be able to have different friendships, different knowledge sources, and you're gonna find somebody that's got a little bit more in common with you and you're gonna hear other points of view.
As a patient is great for me to talk to somebody else who has a KRAS cancer. It's also fantastic for me to hear a caregiver’s point of view, it kind of softens my heart a bit when it comes to my care partners. It also puts a little bit of perspective on somebody else who is say maybe the mom of a cancer patient compared to being the spouse of a cancer patient. And if I'm seeing that, maybe I can be a little more appreciative. And I mean, in a good way, I don't mean in a self-serving way. Maybe it's just a matter of how can my friends help and what does that look like? And more importantly, what are the resources that are available? Those resources are what things are boiling down to. I didn't know about integrative oncology, I didn't know about acupuncture, I didn't know about therapy groups and drum circles and all these other sorts of things — until I started hearing back from other people, and those other people come from different sources.
Moretti: Why is it important for patients with lung cancer to network as much as they can?
Conneran: Broadening your horizons is such an important factor. This way, we see the beauty of a sunset, I'm not just looking at a pinprick, I'm seeing the whole picture. And by seeing that whole picture, maybe I need to drill down in a different area that I didn't know about so how can I speak to that. And just sometimes it's hearing the same thing we've been hearing in a different set of words from a different way. It's important to connect through for me, I use Facebook, I use other forums I've connected with all the lung cancer organizations, locally, internationally. I wanted to connect as a patient with other people that had the same biomarker as the KRAS. But KRAS breaks down into different subgroups. So I want to connect with those folks as well. What does that look like? And when I find out what's going on in my own body, I can connect better because my treatment is going to work better for me as a patient that has a specific type of biomarker, but I have other things that are in common, and I have something in common with other people who have other types of cancers as well. But I also want to be able to have that sense of friendship and camaraderie. Because if we can celebrate somebody else's good news, when we're sad about somebody else's sad news, that can help blend together that tapestry or that strength and that strength, that support that is our hope.
Moretti: Does KRAS Kickers offer any resources to patients who are looking to further their network?
Conneran: It's all about that. One of these opportunities is just what we're doing here with CURE®, because we want to be able to be the hub that's about KRAS. We use KRAS also as an acronym, knowledge, research, which includes the resources, the advocacy, but that's alliances, because we're all working together for survivorship. And we're doing that as being a hub with KRAS, and we're helping out with the lung cancer organizations, all of them. We want to work in alliance with them. We're not all things we can't be all things. There's some excellent buddy programs out there. There's excellent Facebook groups out there. There's excellent resources, we don't need to recreate the wheel, they're doing it we want to be able to point you that direction. And at the same time that works within the other sorts of cancer. These are all part of it. Because even as we start looking at personalized medicine, and I'm the person in personalized medicine, the person in personalized medicine needs more than one resource. You need food, you need water, you need sleep, you need medication, you need all these things. And so we want to be able to connect you out those things, and we want to be able to provide those and so if you are with another organization and we haven't represented it —connect us, we're all about sharing because the hub the whole wheel isn't gonna roll unless we connect all out together.
This transcription has been edited for clarity.