Living with lung cancer means changing the way you approach your daily activities to accommodate your symptoms and treatment. Some symptoms can make daily life more challenging, from getting dressed, to managing the household, to being productive at work. Shortness of breath and fatigue are two of the most reported challenges of people living with lung cancer.
Other common challenges reported by people with lung cancer include the need for support in the community, the need for support for loved ones, and concerns about work, sex and intimacy.
Below are top coping questions reported by people with lung cancer. Our answers provide some basic information, but we encourage you to discuss any concerns or questions with your oncologist and other members of your cancer care team.
Q: I’m short of breath most of the time. What can I do?
A: Shortness of breath is a common symptom of lung cancer. Having difficulty breathing can be a lonely, frightening and overwhelming experience, but it can be managed (and we’re here to help!)
As there are different reasons why you may be short of breath, it is important to discuss this symptom with your lung cancer care team. They may need to investigate it further and determine what is causing it.
In the meantime, try this:
- Move slowly and pace activities/plan ahead (try not to overexert yourself)
- Allow time to rest before and after activities
- Learn and practice breathing exercises such as pursed lip breathing
- Learn and practice relaxation techniques such as visualization, self-hypnosis and slow, deep breathing
- Be aware of your breathing patterns; notice when you become short of breath and do not hold your breath when you are engaged in activity
- Tell family and friends what they can do to help you (e.g. turning on a fan, staying with you, coaching you to breathe slowly, etc.) including issues of potential treatments such as thoracentesis or inhalers.
- Check out if there are local rehabilitation programs or Chronic Lung Programs that could help with breathing retraining.
Q: I’ve been suffering from extreme fatigue since my treatment. How long can I expect this to last and is there anything I can do to give myself more energy?
A: Fatigue is one of the most common side effects of cancer treatment. the fatigue with cancer treatment is different than usual fatigue. the difference, for cancer patients, is that this constant exhaustion is not relieved by rest.
Not all patients experience fatigue, but many notice their fatigue becomes worse over the course of their treatment. Sometimes it can feel particularly severe immediately following the end of treatment. Energy levels then tend to improve over the course of several months.
Experiencing fatigue may mean that you will have low energy for many of your usual activities including housework, social engagements, working, leisure or sports activities, or sexual relations. For a time, you may have to make choices about what you do each day. You may need to pick what is most important to you and do not try to do everything.
For more information, call us at 1-888-344-LUNG (5864) Monday to Friday between 8:30 a.m. – 4:30 p.m. or email us your question anytime at info@lunghealth.ca.
Q: What support is available for my family/friends?
A: Cancer has an impact on family members and friends in addition to the individual diagnosed with the disease. Family members are often shocked by the diagnosis and feel uncertain about how to help you as a patient. They will also experience emotional responses to the situation and need to find ways to cope.
It is important to acknowledge that these reactions are normal and family members may benefit from seeking support from others in the same situation. They will also have many of the same questions that you have as a patient. They will benefit from understanding more about lung cancer, its treatments, and the possible emotional reactions.
Family members and friends may worry about upsetting you if they share what they are feeling. In this case, support groups for caregivers may provide a more comfortable setting for talking to others about the challenges they are facing as family members.
Many cancer support organizations offer these types of programs. It is valuable to continue with usual family activities and ways of doing things; but during treatment and recovery, you may not be able to do your normal tasks such as household chores or going to work. This may mean family responsibilities need to change for a time. For example, a partner may need to grocery shop, pay bills or take out the garbage, or a child may need to do more chores. Sometimes it’s hard for family members to get used to a new routine. It may be helpful to talk together as a family about what is important to each of you and make plans together about how things will be handled during the times of treatment.
Q: How do I navigate sex and intimacy while I’m fighting lung cancer?
A: You may also have questions or concerns about intimate relationships. Cancer can affect how you feel about yourself and have an influence on sexuality. Sexuality can be a very personal issue and one that is difficult to talk about. However, an open and honest conversation often offers the best chance of coping with the changes from cancer and its treatment.
Talking to your partner can help you deal with fear and insecurity. You can also let your partner know where you are feeling pain or what sexual activities you are not ready for.
Your partner may also have concerns that you can address, such as a fear of hurting or pressuring you. Explaining how cancer or treatment have affected how you feel about sex can help your partner understand and let them know not to feel rejected.
Do not hesitate to talk with your physician or cancer care team about the changes your body is experiencing. It may make you feel uncomfortable, but it’s always okay to ask your doctor questions about your sexuality. If there’s someone else you trust on your healthcare team, such as a nurse or social worker, you can have the conversation with them.
Q: How might lung cancer affect my work? What are my employer’s obligations?
A: The side effects from cancer and cancer treatment can impact your ability to work. You may not be able to work in the same way you did before your diagnosis, or you might not be able to work at all. Some of the challenges people face in this situation relate to telling others about the diagnosis, the uncertainty about how they will feel from day to day, the ability to perform at the required level consistently, and the invisible nature of their side effects.
Fatigue and cognitive changes are two of the side effects cancer patients say are most problematic in relation to work performance. These are relatively invisible to co-workers who may not know about the cancer diagnosis. Employers need to understand the nature of the illness and be willing to accommodate the individuals undergoing treatment. For many cancer patients, this is still uncharted territory.
Human rights law offers protection for employees in these situations. However, these laws can be difficult to interpret, can change, and differ from province to province. The following information outlines key elements of the laws regarding your rights, but if you have any questions or concerns about your particular situation, it is best to consult a lawyer for advice.
By law, an employer has a duty to reasonably accommodate an individual who has a disability unless there is undue hardship for the employer. In deciding what is considered “undue hardship” for the employer, a number of factors need to be thought about: the cost to the employer for accommodating the individual with a disability, the size and flexibility of the workplace, and any health and safety issues that could arise (either for the diagnosed employee or for other workers). No two workplaces are the same. What might work for one workplace, may not be feasible for another.
Communication is important because decisions about any modifications required to accommodate the affected individual requires co-operation from the employer, the employee, and the union (if applicable). The primary responsibility for accommodating an employee who is unable to work in the usual manner lies with the employer. However, the employer, employee and union all have a duty to cooperate and be reasonable in the process.
For more information about your unique needs when returning, remaining, changing work or looking for work after a diagnosis of cancer, visit cancerandwork.ca.
Q: I’m self-employed. What financial supports should I be looking into?
A: Unless you have your own private long-term disability financial plan, the only source of funding if you are self-employed is the Canadian Pension Plan Disability Benefit.
This is not a guaranteed source of funding and you will need to meet certain criteria. To be eligible, you must:
- Be unable to work at any job on a regular basis because of a severe and prolonged disability or illness
- Have paid sufficiently into the plan
- Be under 65 years of age
Learn more at cancerandwork.ca
Advance Care Planning
Advance care planning is a process of thinking, talking and telling others about what kind of health and personal care we want to receive in the future. It is important to talk with your healthcare team about several things: what might lay ahead, what type of care you might need, what choices might be available for you, and the type of decisions that might need to be made. Talking these things over with your family and your healthcare team members, and letting them know about your wishes, will help you feel comfortable and confident about future decisions that could be made on your behalf. Taking the time to write your instructions down is another important step. This document is called an advanced care plan. Visit https://www.advancecareplanning.ca/ to learn more.
Lung Cancer Screening
“Screening” means checking for cancer before symptoms develop, even if you feel healthy. Screening can help detect cancer in its earliest stages.
Being diagnosed with lung cancer is often life-changing, and emotional distress is common. Understanding the steps and procedures can help you feel more in control, prepare you to advocate for yourself during your treatment.
The cancer care system can seem overwhelming at first, but we’re here to help you navigate it in a way that makes you feel empowered and supported.
