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There isn’t one best or easiest way to live with a diagnosis of lung cancer.
Here are some suggestions for ways you can live with your diagnosis and treatment: |
Get a Second Opinion (or a third or fourth).
Arm yourself with knowledge of ALL of your options. The experts you consult may all tell you the same thing or they may suggest new options or clinical trials you may want to consider. You should enter treatment with the confidence that you have made the best decision you can. |
Become Your Own Best Advocate.
Talk with your doctors and nurses. Ask questions. Ask them to repeat what you don’t understand. Repeat back to them what you “think” you heard and ask them to confirm that you understood. Be active in your care and choices. Keep a notebook with questions you have, and information about your health and disease, such as your latest test results, medical reports and notes. Bring a family member or friend with you to all appointments so that you can make sure they heard the same information you did. |
Don’t Let Anyone Steal Your Hope.
There is much that even the experts don’t understand about lung cancer, especially how each person will respond to treatment. Forget or ignore the statistics. They tell you nothing about what is going to happen to you. Find doctors who share your hope for survival and are willing to fight right along with you. |
For the Young Person With Lung Cancer
Most lung cancer patients are over age 60. However, a significant number of young people - even those under 40 - are diagnosed with this disease. Your treatments are designed to kill cancer cells, but also may affect healthy cells in your body, including cells of your reproductive system. If you haven’t yet started or completed your family, it is important to discuss with your doctor how your disease and treatment may affect your ability to have children in the future. |
Your Family and Friends
Although you are the one with a diagnosis of lung cancer, your family and other loved ones are experiencing it with you. They are dealing with their own grief, sadness, fears, and worries. One way for them to handle their feelings is to try to take care of you. If possible, allow them to help you. It is part of their healing process as well as yours. When it comes to family and friends:
 Surround yourself with positive and encouraging people.
Take someone to doctor visits with you to help listen or take notes.
Accept offers for help. When people ask, “What can I do?” it’s because they truly want to “do” something. Allow them the pleasure and privilege of helping you. You will be helping them through this hard time, too.
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Support Groups
Support groups offer a chance to talk with others going through situations similar to yours. Yet, many lung cancer patients are reluctant to seek out these groups. Some people actually feel guilty about a diagnosis of lung cancer: if you have smoked, you may feel that it is your own “fault” that you got lung cancer. These negative feelings make support groups especially important for you. You must recognize that no one deserves lung cancer. Support groups also can help your family and loved ones who are affected by your illness.
You may find that in the beginning you come to a group to seek encouragement and hope but that later you are the one to offer that same encouragement and hope to someone else. Many kinds of support are available. Resources for finding support are listed at the end of this page. |
Ongoing Care
Even if there is no sign of lung cancer after your treatment is completed, the fear of the cancer returning is often on the mind of survivors. You may find yourself dealing with treatment side effects, or you may feel the loss of the attention of your medical team and support groups. This is a time of transition that can be difficult: feelings of depression are not unusual. Many people continue to find comfort from support groups even after their treatment has ended. Also, these groups allow you to share your experiences with those who are facing what you have already gone through, which can be rewarding.
Once your treatment is over, it is also important that you receive regular follow-up care. Visit your doctor as prescribed to monitor for any return of cancer. The American Society of Clinical Oncology recommends that you have follow-up appointments with your specialist every three months during the first two years after treatment, every six months during years three through five, and yearly after that. Don’t hesitate to schedule more frequent appointments if you are experiencing troubling symptoms or have other health care concerns. Ask your physician what symptoms you should be on the lookout for. Report them promptly should they occur. |
Resources
- National Lung Cancer Partnership (www.NationalLungCancerPartnership.org)
National Lung Cancer Partnership (formerly Women Against Lung Cancer) is the only national lung cancer organization founded by physicians and researchers. Dedicated to decreasing deaths due to lung cancer, the Partnership is working to help patients live longer and better through research, awareness and advocacy.
- OncTalk (www.OncTalk.com)A medical oncologist mediates a blog of lung cancer-specific information on this website. Key expert opinions are provided on what the latest information really means to lung cancer patients. HOPEFULLY WE are going to have this on our site soon, right?
- People Living with Cancer (www.plwc.org)This website, sponsored by the American Society of Clinical Oncology, provides information that has been reviewed by experts to help patients and families make informed health-care decisions.
- Lung Cancer Online Foundation (www.LungCancerOnline.org)The mission of this Foundation is to improve the quality of care and quality of life for people with lung cancer by providing information to patients and families on its web site and funding lung cancer research.
- National Cancer Institute: Lung Cancer (www.cancer.gov/cancertopics/types/lung) On this website sponsored by the federal government, you will find a section describing lung cancer, its causes and treatments. There is information on clinical trials and research relating to lung cancer.
- Lung Cancer Alliance (www.LungCancerAlliance.org)This organization is dedicated solely to advocating for people living with lung cancer or those at risk for the disease. The Alliance also offers patient education and support programs focused on helping people directly affected by lung cancer.
Support
- Cancer Care (www.CancerCare.org)
This national not-for-profit organization provides free, professional support services for anyone affected by cancer. Support is available in person, online, and by telephone.
- Gilda's Club (www.GildasClub.org)
This organization provides meeting places where men, women, and children living with cancer and their families and friends can join with others to build emotional and social support to supplement their medical care. Support and networking groups, lectures, workshops and social events are offered in non-institutional, homelike settings.
- The Wellness Community (www.TheWellnessCommunity.org)
This is an international non-profit organization dedicated to providing support, education and hope for all people affected by cancer.
- Lotsa Helping Hands (www.LotsaHelpingHands.com)
This website helps friends, family, colleagues, and neighbors to assist loved ones in need. It's an easy-to-use, private group calendar, specifically designed for organizing helpers, where everyone can pitch in with meal delivery, rides, and other tasks that can be helpful during a crisis.
Financial Assistance
- Patient Advocate Foundation (www.PatientAdvocate.org)
This Foundation is a national non-profit organization that seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability.
- HealthWell Foundation (www.HealthWellFoundation.org)
This Foundation provides financial assistance to eligible patients to cover certain out-of-pocket health care costs. At this time, they are not able to serve SCLC patients.
- Lance Armstrong Foundation (www.Livestrong.org)
Cancer Care and the Lance Armstrong Foundation have teamed up to form the LIVESTRONG SurvivorCare program to offer financial counseling for all cancer survivors, including those diagnosed, caregivers, family and friends.
- United Way (http://national.unitedway.org)
Your local United Way can help with basic living expenses, including rent/mortgage, utility payments and food.
- Partnership for Prescription Assistance (www.pparx.org)
For access to specific therapies, this organization offers a single point of access to nearly 500 public and private assistance programs.
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