Cancer support groups and communities can provide tremendous support when you are living with lung cancer, or if you are caring for someone with the disease. Not all groups, however, are the same, and it’s helpful to have an idea about what to look for when making a choice. Fortunately there are many choices, and many lung cancer-specific communities available. Some people prefer in-person groups, whereas others appreciate being able to find others with their particular subtype of cancer that may only be available online. Online options are also available 24/7 and don’t require you to leave home. Let’s look at why community is so important and some of the options.
The Importance of Support and Connections
Many people think of emotional support, but support connections can help in many ways.
You may have the most loving family and friends on the planet, but unless they have experienced cancer themselves it can be hard for them to really understand what you are going through. Cancer support groups offer an opportunity to share with others who have “been there” and experienced the array of emotions that come with a diagnosis of cancer.
Practical Matter Support
Cancer support groups are also a place where you can learn practical information from others who have had to navigate the journey. You might wonder how someone felt on a specific treatment. Or instead, you may wonder how others are managing the financial strain. People in your support group and community sometimes have invaluable tips on questions you should be asking your healthcare provider, but hadn’t thought to ask.
It’s sometimes amazing how much you can learn about your disease from other survivors. In fact, it’s not unheard of to run into cancer survivors who know more about the advances in cancer than many oncologists. When you are living with a life-threatening disease you are motivated to know the options available. At a recent oncology conference that invited patients to attend, several people were present who were alive only because of clinical trials looking at new treatments for a particular mutation. On questioning, a significant number of these people learned about the clinical trials from other survivors, trials that their community oncologists were not yet familiar with.
What Should I Look For in a Cancer Support Group?
While any cancer support group may be helpful, many people living with lung cancer appreciate groups that are just for people with lung cancer. A 60-year-old man with stage 4 lung cancer told me that it was hard for him to connect with a 30-year-old woman with breast cancer in his support group. While he was concerned about leaving his family behind, her greatest concern seemed to be whether she would be able to get pregnant after treatment. That said, there is a common bond that people with any form of cancer and any stage experience, and spending time in person, on the telephone, or online with other cancer survivors can be very rewarding.
Cancer support groups are not all the same, and it’s important to find a group where feel comfortable.
Look for a group that has “good listeners,” people that don’t answer your sentences before you are finished speaking, and don’t jump to offering advice without hearing all you have to say.
it’s helpful to be with people who understand that sometimes you just need to share what you are going through; even though there isn’t an answer. Try to find a group that has a positive emphasis as well. While sharing and supporting each other through the difficult times is crucial, having a group that becomes a “pity party” can leave you feeling drained and less than optimistic.
Local support groups offer the advantage of face-to-face contact with other group members, although they also require the energy of leaving your home to attend meetings. Options can include:
- Your cancer care center, hospital, or oncology group: Ask your oncologist what options are available.
- Community support groups: Many communities have cancer support groups. Ask your friends, call your local community office, or check your community newspaper to see what is available in your town. The Lung Cancer Alliance provides a list of different states that offer face-to-face support groups along with contact information.
Online Support Groups and Support Communities
Online support groups may lack the face-to-face interaction of local support groups, but they have the advantage of allowing you to make connections from home without traveling. Since the Internet is available 24/7, they also allow members to reach out for support any time of day or night. Some options include:
- LUNGevity Support Community: LUNGevity offers the largest online network of people coping with lung cancer.
- Inspire – American Lung Association Lung Cancer Survivors Community: Inspire is a large community of lung cancer survivors who actively support each other day and night.
- CancerCare: CancerCare is a national non-profit organization that offers online support groups, telephone support groups, and for those living in the New York Tri-State area, face to face support groups
- The Cancer Survivors Network: The Cancer Survivors Network is part of the American Cancer Society and provides discussion groups and chat rooms for cancer survivors and their loved ones. In general, the American Cancer Society has been less involved in connecting people with lung cancer than the lung cancer-specific organizations.
- CancerCompass: Cancer Compass has many active message board discussions where cancer survivors can ask questions and interact online with others.
Support For People With Specific Mutations
In the past few years, patients have banded together with healthcare providers and researchers to form patient led groups surrounding several molecular types of lung cancer, especially lung adenocarcinoma. In addition to input from healthcare providers and researchers, patients involved in these groups have been traveling to National and International lung cancer meetings to learn the latest research on their particular type of lung cancer, and in turn are sharing what they have learned on websites and social media. Some of these groups include:
- EGFR Resisters: In addition to connecting with people and learning about your disease via the website, you can find information on twitter using the hashtags #EGFRresisters and simply #EGFR
- ROS1ders: In addition to the website, you can follow the latest research on social media using the hashtags #ROS1ders or #ROS1
- ALK Positive: You can also use the hashtag ALK
As more is learned and more genomic alterations are discovered, it’s likely further groups will form. You can search on social media right away, however, under headings such as #BRAF, #KRAS, #MET, #RET, and more.
Individual Support Services
There are times when you have a specific question you’d like to ask, or when you would prefer to talk to just one person. Some people like having a cancer buddy as well as an online community they participate in. Some options out there include:
Telephone Cancer Support
For those who prefer the telephone over the Internet or desire one-on-one telephone counseling, services are available as well. Free services are offered by:
- CancerCare Telephone Counseling: CancerCare provides free individual counseling for those with lung cancer.
Matching Services for One-on-One Cancer Support
- LUNGevity Lifeline: The lifeline is a service in which lung cancer survivors can be matched up one on one with another survivor facing a similar diagnosis. Caregivers of those coping with lung cancer may also find other caregivers through the lifeline who are facing the same challenges.
- Phone Buddy Program: The Lung Cancer Alliance (LCA) offers this wonderful program. Staff at the LCA interview lung cancer survivors and their caregivers, and match them with other lung cancer survivors and/or caregivers that are facing similar situations.
- Cancer Hope Network: Cancer Hope Network matches cancer patients with trained volunteers that have also gone through cancer treatment.
Other Helpful Services
From finding support for family members, to updating family on your progress, there are now many options.
Keeping in Touch With Family and Friends
CaringBridge provides a website for cancer survivors and their families, so they can keep in touch with other family members and friends. Those with cancer or a representative can post updates, and loved ones can sign in and send notes of support and encouragement.
Support for Children of Lung Cancer Survivors
Amidst the rigors of treatment, we can sometimes forget the needs of the children of those living with lung cancer. CancerCare for Kids offers online support groups for teens (13-19) that have a parent with cancer. There are also camps for children with a parent with cancer that have been appreciated by many in the lung cancer community.
Others With Lung Cancer: Lung Cancer Blogs
Perhaps you’re not ready to join a lung cancer community, but you would really like to know what others living with lung cancer are feeling. You can start by checking out some of these lung cancer social media blogs contributed by some awesome people who are recording their journeys with lung cancer in order to help others feel less alone in facing the disease.
Clinical Trial Finders
Often times, researching on your own for clinical trials ensures you can explore the most options available to you. Companies like MediFind offer vetted lung cancer clinical trials available specifically for your condition. This may be the first step in finding additional outlets for your treatment.
A Word From Get Meds Info
Online cancer communities can be a wonderful way to get support and learn about your disease, but as with anything you do online, safety is important. Before you sign in and start tipping, it’s a good idea to review some tips for protecting your privacy as you share your cancer journey online.