Learning you have EGFR-positive non-small cell lung cancer (NSCLC) can be an overwhelming experience. While everyone handles it in their own way, it may be helpful to know that you don’t have to go through it alone.
You can find support from a variety of sources, including your loved ones, online communities, and therapists. Each can provide different types of support to reduce some stress and help you feel less alone.
If you have EGFR-positive lung cancer or care about someone who does, read on to learn about where to find practical and emotional support for your situation.
The members of your inner circle can be one of the most valuable sources of support when living with EGFR-positive lung cancer.
Friends, relatives, and others closest to you will likely want to help, but they may not understand what you want or need. So, when someone offers to help, take them up on it and be specific about what they can do.
You may consider asking them to help with things like:
- transportation to medical appointments
- meal preparation
You may also consider members of your healthcare team to be part of your inner circle.
They can help you tap into local support services that can make things a little easier. These might include organizations that provide rides to cancer centers or accommodations when you need to travel for treatment.
Your healthcare team can also provide referrals for mental health treatment and other professional support.
Living with cancer may feel isolating. A support group offers the chance to connect with others going through a similar experience, which may ultimately help you feel less alone.
Support groups can also:
- give you the opportunity to speak openly and vent about your feelings
- provide practical advice on living with EGFR-positive lung cancer
- share helpful resources
- help you find ways to cope with side effects of treatment
Basically, it comes down to connecting with people who “get it” because they’re in the same boat. Plus, you may also help others just by being a member of a support group, which may feel empowering.
Support groups are not one-size-fits all, though.
They may meet in person, on the phone, or be virtual-only. Some are led by healthcare professionals, while others are hosted by people living with EGFR-positive lung cancer.
You may need to try out a few different groups to find one that works for you. If a particular group is not helpful to you, you can leave at any time. You may also choose to participate in multiple support groups at the same time.
As you explore a specific support group, it can be helpful to research who runs it, what experience they have, and the rules they’ve put in place.
The National Cancer Institute (NCI) has a database of organizations that offer cancer support services, which can be a convenient place to start searching for support groups.
Virtual communities can help people with EGFR-positive lung cancer around the world connect online. That can be convenient if meetings with an in-person support group don’t fit into your schedule or if there is no in-person support group in your area.
Here are some online communities for people with EGFR-positive lung cancer:
- Exon 20 Warriors, a support group for people with lung cancer and EGFR exon 20/HER2 exon 20 insertions
- EGFR Resisters, a community of people affected by EGFR-positive lung cancer
- Lung Cancer Survivors, a support group and discussion community from the American Lung Association (ALA)
- Lung Cancer Support Community, a social network for anyone affected by lung cancer
Like in-person support groups, each online community is unique, and you may need to explore a few different ones to figure out which works best for you. If participating in an online community is increasing your stress, that may be a sign to try out another one or step away for a little while.
A cancer mentor is typically someone who lived with cancer for a period of time or whose cancer has gone into remission. They can provide support and guidance to someone newly diagnosed with the same disease.
They can give you the chance to talk through concerns, connect you with helpful resources, and share encouragement and coping strategies.
The ALA offers a Lung Cancer Mentor Program, where you can find a mentor or become one. Mentors are screened and trained. The program is free.
Another option is LifeLine Support Partners, which is a free service from the LUNGevity Foundation. In this program, lung cancer survivors and their family members or caregivers volunteer to mentor those who want one-on-one support. You can connect by email or phone.
Not all types of support require active engagement from you. Sometimes, you may find it therapeutic and inspiring to simply read stories by others who have EGFR-positive lung cancer.
If you wish to get more involved, you can share these stories with others or even write your own story.
Your phone can also be a useful tool to connect with sources of support for cancer. Several organizations provide free helplines to point you toward resources and support groups.
- ALA Helpline (800-586-4872; TTY: 800-501-1068). This hotline is staffed by licensed professionals who can connect you with support groups, provide practical resources, answer questions about treatments, and offer advice on managing lung cancer.
- American Cancer Society Helpline (800-227-2345). Call to get connected with trained cancer information specialists. It’s open 24/7 and video chat is also available.
- LUNGevity Helpline (844-360-5864). This helpline allows callers to speak with an oncology social worker who can help with emotional and practical issues and share resources available in your community.
As helpful as support groups can be, they may not meet all your mental health needs.
Dealing with lung cancer can be a lot to handle. If you could use additional support, you’re not alone.
If one is available to you, a mental health professional can provide personalized support and a nonjudgmental space to work through your feelings. Some mental health professionals specialize in helping people with cancer.
Here are a few ways to start your search for professional mental health support:
- Ask your doctor and others on your healthcare team for a referral.
- Try the psychologist locator from the American Psychological Association.
- Check the psychiatrist database provided by the American Psychiatric Association.
- Look at who is in-network with your health insurance company, if you have health insurance.
Another potential source of support can be a spiritual community, leader, or activity. According to the NCI, spiritual distress can make it harder to cope with cancer and cancer treatment. Addressing spiritual issues may help increase positive feelings and improve your ability to cope.
Spirituality means different things to different people. Whether it’s quiet meditation, attending religious services, or consulting with a spiritual leader, do what’s right for you.
Having EGFR-positive lung cancer can impact both your physical and mental health. Though there are things you can’t change, finding time to take care of yourself can help you feel more in control and provide some much-needed restoration.
Here are some self-care tips to try:
- Accept help when offered and ask for help when needed.
- Take time to do enjoyable activities.
- Try massage, aromatherapy, or deep breathing exercises.
- Spend a little time out in nature.
- Eat foods that help you feel good.
- Allow plenty of time for rest.
- Spend time with the people who matter.
- Give yourself permission to say no when you need to.
- Insist on alone time if that’s what you need.
Living with EGFR-positive lung cancer can be stressful and overwhelming, but you don’t have to go it alone. From loved ones and doctors to support groups and therapists, many sources of support are available.
Consider the type of support you’re looking for and start your search there. You can also tap into multiple sources of support at the same time, and stop using resources if you don’t find them to be helpful.
You can also support your own well-being through self-care techniques, like spending time in nature and doing your favorite activities.
If lung cancer is making an impact on your mental health, consider connecting with a professional (such as a therapist) for additional support.