Coping With Small Cell Lung Cancer

Coping with small cell lung cancer goes far beyond the physical aspects of the disease and affects all aspects of life: emotional, social, and practical well-being as well. If you or a loved one have been diagnosed with the disease, you may wonder where to even begin when it comes to coping with so many complex concerns at the same time. Problem solving experts tell us that seemingly enormous problems are best addressed by breaking down the problem into individual issues and concerns, and we will do just that. Let's look at a number of concerns that you or your loved one may be facing now or in the future, and share some tips that researchers and others living with the disease have found.

Emotional

For many people living with small cell lung cancer, the emotional aspects of the disease are as challenging as the physical. You may experience a wider range of feelings than ever before, and these may occur in a single day. Whatever you are feeling, whether intense anger or deep joy that seems inappropriate at the time, most of these emotions are completely normal. If you are the type of person who is their own worst critic, this might be a good time to stop. Give yourself permission to feel what you are feeling, no matter what other people think you "should" be feeling.

Anxiety and Uncertainty

Anxiety is a given for the majority of people living with small cell lung cancer. Uncertainty about the future (whether that means treatment, survival, changes in relationships, and more) no matter what stage of disease you have, is one of the issues that doesn't have a simple fix. While your healthcare provider may estimate your prognosis, there is not a practitioner alive who has a crystal ball. Some people do extremely well despite a poor prognosis, and others have poor outcomes despite an excellent prognosis.

Looking at Your Uncertainties

One step that has helped others is to write down all the uncertainties that are running through your mind. You may be surprised at the number. Simply the motions of writing down your "list" can sometimes be helpful. Our minds tend to "rehearse" concerns lest we forget them. Once you have recorded your worries you may even want to consciously tell yourself that you are aware of the concern, and don't need to be reminded.

After you have your uncertainty/fear/worry list written, the next step is to separate the items into a list of things that you cannot change/have no control over, and things that you may able to alter. Again, you may wish to consciously tell yourself that the items on the "cannot" change list can't be changed right now, so you don't need to give them emotional energy. The list of things you have control over can be empowering. Everyone's list will be different. Some people may want to make changes in relationship; have a long-put-off conversation, express love that has been assumed in words, or in some cases, end a toxic relationship. Others may want to do something on their bucket list, or consider that move they've been planning.

Living in Contradiction

An entirely different approach is one that the organization "A Fresh Chapter" embraces. The organization offers volunteer trips to cancer survivors in which groups of survivors travel to poverty-stricken areas around the world to volunteer. It's not only cancer survivors who live in limbo. What surprises many survivors is how often these poorest of poor have learned to experience joy while living in horrendous conditions. They have somehow learned how to live in contradiction. You don't need to go to Peru, India, or Kenya to observe people who are living in contradiction every day, experiencing joy alongside heartache. Think of people in your life who have been living in this "in-between" place. Getting to the place of being content in the middle of a store takes time. But experiencing joy amidst sorrow can be beautiful.

Coping with Stress

In coping with uncertainty, stress management is paramount. One study that looked at uncertainty in people with lung cancer found that higher "perceptions" of stress were correlated with greater intolerance of uncertainty. The perception of stress and actual stress are two different things, and fortunately, the perception of stress—how stressed out we feel—is something we can control (at least to a degree). So how can you decrease your perceived stress so that you aren't quite as upset about all of the uncertainties in your life?

Stress management takes time, but there are small ways people can begin to manage their stress today. It can be hard to know where to start, but some people find that first identifying their stressors is a good step. Next, and before tackling long term stress reduction practices, you may wish to try some simple stress reducers that can work instantly, such as deep breathing. As a way to counteract both stress and fatigue, think about what you are doing in your life right now that you could eliminate. Many of these things could be adding to your stress.

There are also "alternative" or mind-body therapies for reducing stress that have now been studied to at least some degree for people with cancer, and many of the larger cancer centers now offer these complementary treatments. Some of these stress-reducing therapies are associated with a reduction in symptoms such as fatigue, pain, or depression. Examples include:

• Meditation and/or prayer
• Massage
• Yoga
• Qigong
• Art therapy
• Music therapy
• Pet therapy

There may be benefits for integrative therapies that go beyond stress reduction. A 2019 study in Korea found that combining these integrative therapies with conventional therapies for people with lung cancer appeared to improve survival to some degree.

Finally, many people may not be aware of what exactly is leading them to feel anxious, fearful, or even terrified. Journaling can be an excellent way for some people to clarify their thoughts. Similarly to the list of "can-change-can't-change," the act of putting your feelings on paper alone can be helpful.

Anger

It is normal to feel angry when you have been diagnosed with lung cancer. Lung cancer, no matter what you have done during your life, is not fair. it's not easy coping with anger when you have cancer. The medical system may fail you. People will fail you. And all at the same time that you need care and support the most. It's extremely important to be able to express that anger. "Stuffed" anger doesn't usually stay hidden, but rather erupts at some time, often on someone who doesn't deserve it. You don't need to express your negative emotions with everyone you know, but being able to talk openly with one or two close friends is important. Who do you know who is a good listener and won't try to fix things that can't be fixed?

We hear a lot about "letting go" and "forgiveness," but what does that actually mean? Letting go and forgiving yourself means that you no longer have to think about how you could have done things differently in the past so that you might not have cancer now. Letting go and forgiving means that you don't need to rehearse the pain caused by others. It does not mean that how someone treated you or how they are behaving now is okay. it simply means that you are no longer going to let your feelings about that hurt continue to hurt you.

Depression and Grief

Depression is very common in people with cancer, especially lung cancer. But how can you know if you are experiencing normal grief, or instead depression that should be addressed? There's not an easy answer, but it's important to talk to your healthcare provider if you are feeling blue. There are ways to treat depression, and it doesn't mean you need to take another pill.

Studies have found that with lung cancer, depression may be a physical "side effect" of the disease itself. Researchers have found that levels of the protein C-reactive protein (CRP), evaluated with a simple blood test, correlated with depression in advanced lung cancer. The sensitivity of the test is relatively poor, but when the level is high—greater than 3.0 milligrams per milliliter (mg/mL)—with the average level in people without lung cancer being 0.75 mg/mL, roughly 88% of people were experiencing clinical depression. What this means is that a blood test may help determine (along with talking with your practitioner and/or a counselor) if you are experiencing clinical depression. If so, your healthcare provider may recommend a treatment that targets the effects of inflammation in the brain.

Counseling can be very helpful for some people, and others may need medication. The only way to know if you would benefit is to talk to your healthcare provider.

The consequences of not addressing depression with lung cancer cannot be understated. The risk of suicide in cancer patients is far too high, especially among people with lung cancer. Somewhat surprisingly, the risk is highest in the first year after a diagnosis, and is present no matter the stage or symptoms related to the cancer.

Symptoms that suggest you may be dealing with clinical depression and not only grief include:

• Feelings of helplessness, worthlessness, or hopelessness
• Loss of interest in activities that you would ordinarily enjoy
• Persistent feelings of sadness
• Poor concentration
• Sleep changes
• Thoughts of death or suicide
• Decreased energy and loss of appetite are also symptoms of depression, but are common in people with lung cancer who are not depressed as well

Guilt

Guilt can come in many forms to people coping with lung cancer. The "what ifs" and "I should haves" can extend to many areas of life. What if you hadn't smoked, or hadn't been around smokers? What if you had seen the practitioner sooner? What if you had seen a healthcare provider who recognized that you had lung cancer earlier? How will this affect my family? If you're involved in a support group or community, another type of guilt may arise. Cancer "survivor guilt" can take a different angle, and instead of "why me," you may be asking "why him and not me."

Guilt is another challenging emotion to address. Some people try affirmations, repeating things such as "It doesn't matter if I smoked, I don't deserve to have lung cancer, I am a good person." Sometimes working with a counselor can be very helpful in releasing these hurtful feelings.

Coping With the Stigma

The stigma of lung cancer being a "smoker's disease" is pervasive, and despite the efforts of lung cancer advocates to create change, persists among both the public and healthcare providers. Even though smokers and never smokers alike can develop the disease, the first question people are often asked is, "Did you smoke?" This differs from the kind comments people often get if they share their diagnosis of prostate cancer or breast cancer. And, most importantly, even if someone has been a lifelong heavy smoker, they don't deserve the stigma. Everyone deserves kindness, compassion, and best medical treatment available regardless of their "smoking status."

Some people find it helpful to think of how they will respond to this question. In most cases, the question is innocent, and it may be a good educational moment for the asker. Unfortunately, while most people who ask this question quickly forget, the one who is asked may continue to feel upset for a long time. Think of ways you can respond (or better yet, how you can have a loved one respond), now, so that you don't waste any of precious thoughts feeling hurt.

Staying Positive While Expressing Negative Emotions

Despite the comments you may hear such as "you just need to have a positive attitude," there is no evidence that shows a positive attitude improves survival with small cell lung cancer. That said, trying to have a positive outlook can help you live more fully, and helps ensure your loved ones don't pull away when you need them most.

While staying positive is a worthy goal, it has important downsides. Many people with cancer have stated that they are afraid to be anything but positive. We read obituaries that talk about people with cancer having courage and never complaining. But expressing negative emotions is every bit as important and likely more. Negative emotions don't just go away if you "stuff" them. They linger in your mind, bumping stress hormones from your adrenal glands, that, at least in theory, could be more detrimental than not being positive.

Physical

Managing your physical symptoms as well as diet and exercise are critical to how you feel not only physically, but emotionally, and often, are things over which you have some control.

Eating and Nutrition

With cancer, nutrition is more important than ever, but it often gets pushed to the back burner. Oncologists focus on treatments rather than nutrition that could improve well-being, and that's to be expected. There are enough recent advances in medicine that keeping up with treatments alone is challenging.

Some cancer centers have oncology nutritionists on staff, and you may wish to ask your oncologist if a consult would be helpful. Nutrition with cancer is different than general nutrition, and much more complex due to side effects that affect appetite and eating.

There are many symptoms of cancer and side effects of treatment that can interfere with eating and getting the nutrition you need. Addressing any of these is an important first step.

• Loss of appetite
• Taste changes
• Mouth sores
• Nausea and vomiting

With small cell lung cancer, cachexia (a syndrome that includes unintentional weight loss and muscle wasting) is far too common. Not only does this syndrome worsen fatigue and reduce quality of life, but it's thought to be the direct cause of 20% of cancer-related deaths.

Research looking at methods to prevent as well as treat cachexia has been frustrating; simply increasing calories alone or adding nutritional supplements is insufficient. It's thought that cachexia begins even before weight loss is noted, and researchers are looking for ways to determine who is at risk early on after a diagnosis.

Certainly, trying to eat a healthy diet is important. There is promising research looking at several therapies, such as omega-3 fatty acid supplements, amino acid supplements, appetite stimulants, and marijuana. A strong focus now is looking at the role of gut bacteria in cachexia, and how altering the microbiome might reduce the risk or severity. It's important to talk to your oncologist about any appetite issues or weight loss that you've experienced. With many clinical trials in progress, it's hoped that there will be confirmed methods to prevent or treat cachexia in the future.

Exercise

It may seem counterintuitive, but some degree of exercise can actually improve fatigue. It also reduces the risk of blood clots that are so common among people with lung cancer. That said, "exercise" doesn't mean you need to try to drag yourself to the health club daily while coping with symptoms and fatigue. Activities such as a leisurely walk or gardening are often ideal. If you are able (and we are aware that not everyone is) try to "move" in some way each day.

Fatigue

When it comes to symptoms related to cancer and cancer treatments, cancer fatigue is at or near the top of many lists. It's important to talk to your healthcare provider if you are tired, even if you feel it's expected given your diagnosis. There are many causes of fatigue in people who have lung cancer, and some of these are treatable.

Often times there are no simple cures for fatigue, but there are a number of ways you can manage this feeling so that it has less impact on your life. Prioritizing activities so that you do those most important at the time of day you feel best is a start. Learning to ask for (and receive) help can be hard for some people, but can free up your energy for what you most enjoy. If you are hesitant to ask for help, put yourself in the shoes of your family and friends. Loved ones of people with cancer often say the worst part is the feeling of helplessness. By "letting" your loved ones help you, you may be helping them as well!

Pain

Pain is important enough with small cell lung cancer, that healthcare providers currently have guidelines to ask about pain, even at the time of diagnosis. Cancer pain can occur for many reasons, and can take many different forms. Not only is pain uncomfortable physically, but it can affect people emotionally as well. When faced with a loved one who is irritated, family caregivers of people with cancer are often instructed to ask the question, "Is it pain talking?"

Unfortunately, pain is currently underrated among people with cancer, but this does not need to be the case. If you use pain medication now, you will not be immune to its effects later on. And the risk of addiction is very low in people who have advanced cancer. At the same time, living without pain can allow you to enjoy your life and loved ones as much as possible.

If you are having pain that is not controlled, call your practitioner. Healthcare providers are human, and the only way they will know if you are having pain is if you tell them. Everyone experiences pain differently, and you do not have a "low pain tolerance" if you need help with pain that another survivor controlled without medications. Be kind to yourself, and treat yourself as you would treat someone you loved who was living with pain.

Complications and Progression

Sadly, progression and complications are far too common with small cell lung cancer. Some people find that experiencing progression or these common complications is harder than even the initial diagnosis. Certainly it's heart-wrenching to be diagnosed with cancer, but many people are able to then channel their energy and fears by focusing on how to treat the disease.

If you've been receiving treatment and learn that your cancer has continued to grow (or began to grow again), it is a second blow. It can be similar if you experience a complication such as blood clots after feeling that living with cancer alone was enough. You may also notice a difference in support after progression. When people are initially diagnosed with cancer, they may be surrounded by loved ones who wish to be there for them. With progression, it may feel like these people have gone back to their normal daily lives while you continue to face the cancer.

Asking for support is important, and letting people know about your struggles is important. Unless people have coped with cancer themselves, they may not be aware of the emotional gut-punch that is progression.

Social

A diagnosis of small cell lung cancer affects every area of life, and social life is clearly one of those areas. Social interaction is important, but no matter the relationship or issue, communication remains key.

Sharing Your Diagnosis

When you receive a diagnosis, one of your first questions may be who and when to tell. While it's important that you share your diagnosis with a few people, you don't need to share your diagnosis with everyone. If you've always been the "strong one" and handled problems yourself, it's a good time to change. It takes a village to live with cancer.

Relationship Changes

Your relationships will change with cancer. Some people who you felt were very close will pull away, while others, even people you had never met before, may become close friends. It's not only friends who may come or go, but some people living with cancer withdraw. This withdrawal is important in some ways. The fatigue of treatment often makes it impossible to nurture all relationships to the same degree. But if you find yourself pulling away from those who are closest in your life, you might want to talk with an oncology counselor. Not only is the support of loved ones important for your emotional well-being, but some studies suggest that social support can influence survival.

Finding Your Tribe: Support Groups and Community

No matter how loving your family and friends, there is something very special about talking with others who are facing similar concerns. In-person support groups can be wonderful, but there are a few caveats. Some people are just too fatigued to attend these meetings. And even when they do, the benefit can depend on the mix of people. If you are living with extensive-stage small cell lung cancer you may have little in common with a 32-year-old woman with early-stage breast cancer.

For these reasons, many people choose to go online to find community. An added benefit of these communities is that, in addition to social support, many survivors are very familiar with the latest research on lung cancer. It's not uncommon today for someone with cancer to learn about a new treatment for lung cancer (one that is potentially life-saving) that they learned about from other survivors instead of their community oncologist.

The online lung cancer community is very active, and there are in-person summits around the country as well. Whether it is a group through one of the lung cancer organizations, one on Facebook, or hanging out on Twitter (the hashtag to find others with lung cancer is #lcsm which stands for lung cancer social media), people can usually find their niche and their tribe.

For Family Cancer Caregivers

Cancer is a family disease, and, in addition to providing care and support, family and friends must cope with their own fears, uncertainties, and grief as well.

Self Care

Taking care of your own health is critical when you are caring for someone with cancer. As flight attendants tell us on every flight, you need to put on your own face mask before assisting others. Eating a healthy diet, getting enough sleep, exercising regularly, and having time for yourself are even more important when you are caregiving.

Support

Just as your loved one needs support, you do as well. Who in your life can assist you as you care for your loved one? Caregivers also need to learn to ask for and accept help. It takes a village as a caregiver as well. You may want to look at each of the issues just discussed, and see how they are important for you. Relationships often change as your time is taken up with caregiving. And all of the emotions from anger to depression affect caregivers and patients alike.

Some communities have support groups for caregivers, but there are online options as well. The organization CancerCare was one of the first to talk about the importance of support for caregivers, and provides resources ranging from one-on-one support, to support groups, to podcasts, and more for caregivers.

Anticipatory Grief

One area in which support is extremely helpful is with anticipatory grief. Anticipatory grief is the grief that many people experience while their loved one is still alive. Unlike conventional grief, however, many caregiveres are unable to express this grief; they don't want to be construed as giving up, or don't feel it is right to express sorrow while their loved one is alive. Simply taking the time to learn about anticipatory grief, and know that it is normal, can be helpful.

Recognize Symptoms of Burnout

Caregiving is hard, and burnout is far too common. First recognized in health professionals, compassion fatigue and burnout occurs in family caregivers as well. If you find yourself feeling less compassionate and caring towards your loved one, you may be experiencing compassion fatigue. There is hope to return to who you once were, but it sometimes requires really asking others to step in and help.

Practical

Many people find that their daily schedule is already too full, and complaints of being busy are the norm. Adding cancer to the mix can amplify the magnitude of these practical day-to-day matters to the point that some cancer survivors admit to feeling paralyzed. How can you cope with your new full time job of being a cancer patient on top of everything else in your life? And even though nobody likes to talk about the "what ifs," what are your preferences for the end of your life and how can you prepare?

Daily Life

Even if you've been the type of person who does everything him or herself, that can change with a diagnosis. Asking for help sooner, rather than later when you are exhausted, is something many cancer survivors put on their what-I-wish-I-had-done list. If you are a list maker, you might find it helpful to list out your daily chores and needs, and then make a separate list of everyone in your life who could help.

The internet has made coordinating family and friends to help much easier. Sites such as LotsaHelpingHands have a platform through which people can list chores and activities that they need help with (ranging from grocery shopping, to cleaning, to transportation, and anything else you can need), and friends and family can "sign up" to complete that chore or duty. The beauty is that people who hate cooking or driving can usually find some way to help you.

Work

If you are still working, there are several issues to consider. Is your health insurance linked to your job? Even though employment law requires employers to provide reasonable accommodation, you may be unable to continue working. Fatigue alone can make working, especially full time, a challenge.

The organization Cancer and Careers has a plethora of resources available for those who are wondering about their job. In addition to information on the issues faced and legalities of working during cancer treatment, they can assist you in figuring out where to begin after a cancer diagnosis.

Financial Concerns

Financial concerns are extremely common among people with lung cancer. At the same time that you may be unable to work, the bills skyrocket. Less in and more out can quickly put people in the red, and medical conditions are a leading cause of bankruptcy in the United States.

For those who are struggling to make ends meet, there are a number of options for financial assistance for people with cancer. Talking with an oncology social worker at your cancer center is also important, as they are frequently aware of local options for assistance as well. Rather than the organizations that support people with all types of cancer, one of the lung cancer organizations may be able to help.

Keeping careful records of your spending can sometimes pay off very well. Many people are discouraged by the limits when it comes to itemizing medical deductions, but surprised to see how they may help the bottom line. Keep in mind that tax deductions for cancer patients go beyond clinic visits and medications, but include your mileage when traveling to visits and much more.

With a little time and creative thinking, there are a number of other ways people have eased the financial burden of lung cancer. For example:

• A friend could plan a fundraiser
• You could do a Go Fund me or similar campaign
• Friends could reach out in other ways via social media and phone calls
• Take advantage of free items offered to lung cancer patients

Planning for the Future

Talking about what happens if treatment no longer works is a conversation that many people hope to avoid, but unfortunately, these concerns will be faced by many people with lung cancer. Planning ahead gives you time to carefully think through your wishes. There is also a silver lining to these conversations. Many people find that their relationships deepen when they openly discuss these painful subjects with loved ones.

Completing your advance directives is not only important, but many people claim they wish they had done so earlier. How detailed your plan is, is up to you, but having your wishes in writing not only ensures your wishes will be honored, but takes the burden of making sometimes painful choices off the hands of your loved ones.

A Word From Verywell

There are many issues to face if you've been diagnosed with small cell lung cancer, but there are many resources as well. Learning to ask for and receive help, reach out for support, and share the journey with others is not easy for everyone, but can reduce at least some of issues you can control.