Kristie L. Kahl: Living with a lung cancer diagnosis, what kind of support services are out there for patients and their loved ones?
Miranda Goff: There’s a wide variety of support services that are available for a newly diagnosed patient or a patient who has been in treatment for some time. And that’s a really good thing because needs change over time with a lung cancer diagnosis and not everyone needs the same type of support. So I would always recommend the first place to start is with the treatment team. A lot of times patients are overwhelmed in the first appointment and they may not even think to ask questions about their team, but the team is a great resource to find out what the local resources are, what’s already being provided at the cancer center.
But, outside of the cancer center, there are national-level resources and community-based resources like GO2 Foundation for Lung Cancer and one of the main reasons why people reach out to us is for information whether they are newly diagnosed or having a change in their treatment and want to learn more. So as a way to provide additional support we offer one-on-one navigation through that process and I help patients to sort out what it is that they may need. But then I can also connect them with other patients who have been through similar types of treatment and support groups and other professionals that they might need to talk to.
Kristie L. Kahl: So whether you are newly diagnosed or in the thick of treatment or maybe even considered in survivorship, why is it important for patients to seek out these services?
Miranda Goff: So finding an outlet during the course of treatment is very key because managing the stress of treatment, appointments and just usual life can take a toll. So being proactive about finding an outlet and using that outlet throughout the course of treatment is highly recommended to reduce anxiety, depression and other things that can come up as a result of the stress.
Kristie L. Kahl: What are some examples of these outlets?
Miranda Goff: It varies from person to person but one of the ways that people have dealt with a cancer diagnosis is by getting together with other patients who can relate. And we do provide a list of lung cancer-specific support groups on our website so patients can find those and if they can’t find a support group in their area we can direct them with somebody that they can talk to on the phone who has been through a similar type of treatment. So that is one way — talking to a peer. Other ways people have learned to cope is by actually meeting with a professional and talking through ways to cope with stress, relaxation exercises, finding ways to really create new outlets. Maybe it’s journaling. Maybe it’s meditation. It’s different for each person but it’s really about what works for each patient.
Kristie L. Kahl: We talked about the depression and anxiety side of things, but there is also a stigma that comes along with lung cancer. How can patients or maybe even support groups negate that stigma that’s associated with the disease?
Miranda Goff: I find support groups to be a great way for coping with stigma because it gives you a chance to share your story and what I have heard from a lot of patients is that going to a lung cancer support group you learn that lung cancer affects people differently. It affects all different types of people — mothers, fathers, sisters, brothers and all varieties of histories, and so I think it takes the shame away because there is a lot we don’t know about what causes lung cancer.
Kristie L. Kahl: What is a good way for a patient to be able to explain to their loved ones, or friends or coworkers?
Miranda Goff: The short answer for that is that a patient never has to explain their disease to someone. If someone is wanting to learn more about lung cancer, what a great opportunity that is to spread awareness. But if someone is being asked the question that we most often associate with stigma, which is “Did you smoke?”, there’s a variety of ways a patient can answer that question. But first it’s about how does the patient want to answer that question? Do they even want to share that history with the person?
And that power lies within the patient. But if they choose to talk about their history, it’s also important — it can be a good teaching opportunity for the person someone is talking to — to say 20% of people diagnosed with lung cancer have never even smoked. It may also be an opportunity to share about how smoking can be an addition. It is an addiction, a very powerful addiction. And a lot of times when people start smoking, they didn’t even know the negative consequences of what could happen with smoking beyond lung cancer. So, reminding people that smoking is an addiction and really choosing to select who you share your story with but you don’t have to share your story if you don’t want to.
Kristie L. Kahl: Lung cancer and its treatment has evolved over the last decade. Now patients are living longer. How has that changed in the role of support and side effects and coping and everything that’s associated with the psychosocial aspects of the disease?
Miranda Goff: The needs certainly have evolved and one of the greatest parts of all of this is that patients are now able to rally around each other and they’re getting very specific in the ways they rally around each other. For example, as people are finding out their biomarker testing that they have a specific biomarker they are able to get together with other patients who are on similar treatments and to discuss how their treatments are affecting them and how they’re dealing with side effects but really there are some unique side effects that are involved and require some adjustments. For example, on targeted therapy one of the most common side effects can be diarrhea, which obviously for quality of life reasons trying to plan around that or trying to adjust and talk to other people about how they made changes to live their life and have it interrupted as little as possible.
Kristie L. Kahl: One aspect that we hear a lot from patients when it comes to a way to cope is exercise. How has exercise come into play with these patients?
Miranda Goff: Patients have varying types of exercise that they were doing before treatment and for some people who were diagnosed early stage and were very active sometimes they want to jump back into all the usual activities but talking to the doctor about an exercise program maybe in the community setting or with a physical therapist but trying to take it easy, take it slow so that you can get back into those usual routines.
If someone didn’t exercise before the diagnosis, really trying to get them into an exercise program or at least starting and building up because what we do know is that exercise can help with the prevention of recurrence.
Kristie L. Kahl: With exercise, does that help with any of the long-term effects that patients are dealing with?
Miranda Goff: Exercise can be a great outlet for anxiety, depression. It can also help with other side effects that can come up from treatment such as fatigue. The treatment recommendations for the amount of exercise that you need to do for those can vary so it’s important to talk to the doctor about much exercise you should be doing.
Kristie L. Kahl: Do you have any advice for patients who are looking for an outlet to cope with?
Miranda Goff: My advice would be to consider things that you have done to cope in the past. So usually going back to other successful coping strategies that you have used in the past for other stressors in life. But, of course, a cancer diagnosis can trump all of that and maybe all your usual coping skills don’t work. In that case, I would recommend talking to a doctor and also other members of the team whether you might benefit from therapy, medication, but beyond that, I would also recommend that you try anything. Try some other outlets.
If you didn’t use to like to journal, you can give it a try. If you haven’t attended a support group, attend that support group. Give it a shot. At least once or twice. And you may find that something you didn’t ever think would work for you works.
Kristie L. Kahl: Just to close it out. For an individual that’s living with lung cancer, how can we help to empower them to make a change?
Miranda Goff: So empowerment is key to all of this. We need to empower the patients and take their voices. So sharing their voices, especially when we take it to Capitol Hill for the annual summit and sharing the patient’s perspective with key topics that matter to them. But empowering the patients can be done in so many ways.
Patients can write letters to their members of Congress. They can join the lung cancer registry and put their information and empower the research community to be able to use that information to find trends to help the research community. I could go on and on. But if patients want to get involved and find ways to empower other patients as well maybe by becoming a peer mentor, starting a support group, sharing their story online. There are a variety of ways to do it and if they would like to call the helpline, I would love to guide them through ways to do that.
Transcript edited for clarity.