This Month: Cancer and Anxiety
Answered by Maryrose Mongelli, LMSW
How do you find "joy" in life when faced with your partner's serious cancer treatments, pain, and surgery? I find that I am worried/anxious most of the time.
Finding joy in life amidst turmoil is not easy. The biggest question you have to ask yourself is how helpful and supportive are you going to be to your partner if you are not taking care of yourself as well. I think the best analogy I can offer to illustrate this concept is the oxygen mask… flight attendants instruct the passengers as follows: “In the event of an emergency, please put on your oxygen mask before assisting others.” Take time out of your day even if it is five minutes to do something relaxing and enjoyable solely for you. Also, being mindful of the loving and joyous moments you share with your partner, as well as moments for yourself, such as recognizing the beautiful weather, if you have children enjoy the moments with your child(ren), if you have pets be mindful of the solace and satisfaction they bring you.
Anxiety (worry) is a natural feeling when facing a loved one’s cancer diagnosis; it often makes one feel a lack of control, and overwhelmed. Our bodies have what is called a flight or fight response, and when we perceive a threat to our personal well-being, our life, or even a loved one’s life, this mechanism is triggered, in which we choose to engage the threat or flee from it. To engage the threat means to understand the root cause for the perceived threat, and take steps to minimize its effects. There are some steps you can take to minimize anxiety, such as physical activity, deep breathing, or five to ten minutes of progressive muscle relaxation. Moreover, it is also important to understand the nature of the anxiety: are you experiencing physical symptoms related to your anxiety, or are you having negative thoughts or both? When experiencing negative thoughts, ask yourself the following questions: “What is the evidence for this negative thought? Am I looking at both sides of the issue?” Then counter those negative thoughts with three alternative positive, self-supportive statements.
My wife got back her biopsy and has her surgeon visit scheduled for the 22nd. She is 52 and I am so scared I cannot put it into words. I know I need to be strong for her and I am in front of her but I cry for hours when I am alone. I need to find a way to put some of this fear away so I can be the man she needs me to be and help her through this. Any advice?
It is a natural reaction to feel scared, especially with a cancer diagnosis. It is admirable that you want to be strong for your wife and give her the support she needs, but what about the support you need? It is helpful to have someone to talk to about your fears, someone who can be objective, someone that you can trust. You may want to join a support group for caregivers or engage in individual counseling or both. CancerCare offers in-person counseling for people in New York City, Long Island, and parts of New Jersey and Connecticut. If you live outside of those areas, we offer short-term telephone counseling to help you cope with the cancer experience. In addition, we also offer support groups in three different modalities: in-person (if you live in New York City, Long Island, New Jersey and Connecticut), telephone support groups and online support groups.
Here are some additional resources that may be helpful to you if you feel you need longer term supportive counseling:
- American Psychosocial Oncology Society (APOS), which offers a free referral service to help you find a mental health professional (psychiatrists, psychologists, clinical social workers and other counselors) in your area: 866-276-7443.
- Help Starts Here, through the National Association of Social Workers offers an online directory of clinical social workers, psychologists, psychiatrists and other licensed professionals. You can search each database for clinicians who have experience in cancer issues.
Answered by Other Experts
Since I've been diagnosed, I've been anxious and sometimes feel overwhelmed by my thoughts, which I can't seem to "turn off." Are there any ways I can help myself to feel more calm?
Anxiety is a natural emotional experience for eveyone. When someone has to cope with a cancer diagnosis, anxiety (or worry) can increase, intruding on an individual’s ability to regain a sense of calm, clear his or her thoughts and feel more control over the issue at hand. Chronic anxiety can lead to fatigue and depression over time, so it is important to find techniques that can offer relief from the stress of cancer, even if just for short periods of time.
When confronted with crisis, our bodies trigger a “fight or flight” response. Part of this physical response is rapid, shallow breathing, which increases blood flow through the heart and puts extra oxygen into our bodies. A person under chronic stress will continue to take shorter, more shallow breaths, which will in increase stress and create a continual state of anxiety.
Here’s a simple breathing exercise that can help calm you:
- Sitting down, place one hand on your chest and the other over your navel.
- Take three breaths and observe your breathing. For most people, the chest area tends to rise more than the abdomen.
- Now, take in a deep breath and extend your abdomen. Picture your lungs as long, narrow balloons, filling up from the end to the front; and from the bottom to the top.
- Hold the breath and silently count to five; then, exhale loudly.
- Do this for three breaths and then sit quietly for a moment. If you feel lightheaded, hold the next breath for a shorter time. Most people find there is a calming feeling that follows.
The beauty of this exercise is you can do it anywhere, anytime. The goal is to reduce stress by returning yourself to a natural state of breathing.
You can find more relaxation techniques in CancerCare’s fact sheet, Relaxation Techniques and Mind/Body Practices: How They Can Help You Cope With Cancer.
How can a cancer survivor deal with fear of recurrence?
Fear of recurrence is very common and understandable in the context of your recent cancer experience. There are several ways in which you can manage this anxiety in order to live a full and meaningful life:
- Ask your oncologist about chances of recurrence, regular tests to schedule to check for signs that the cancer may have returned and steps you can take to increase the chances that it will not.
- Assess your life and look at your daily routine. Are there things you could improve about your diet? Ways to increase your physical activity? Things you can do to help you relax? To sleep better?
- Read our publication After Treatment Ends: Tools for the Adult Cancer Survivor.
- Listen to our podcast, Communicating with Your Health Care Team After Treatment: Making the Most of Your Visit.
- Consider talking to a professional counselor, such as an oncology social worker at CancerCare who can suggest ways to manage your anxiety and help you process your feelings.
- Many cancer survivors also find support groups very helpful, as they can talk to other survivors with similar worries and fears and learn new coping skills. View support groups at CancerCare.
- Listen to our podcast Fear of Recurrence and Late Effects: Living with Uncertainty.
- Talk to your trusted friends or family members about your concerns. Even if there are just one or two people with whom you feel comfortable sharing your fears, this can be a powerful way to get some relief from your anxiety.
- Make sure you continue to engage in hobbies and socialize with your friends is an essential and healthy form of distraction.
- Listen to our podcast Survivors Too: Communicating With and Among Family, Friends and Loved Ones.
- Reflect on what makes your life meaningful, both before and after cancer. What values and activities are important to you? How can you continue to honor those things you hold dear? Focusing on the bigger picture can help minimize the anxiety and remind you what you can do in the here-and-now to live a full life.
- Read our publication Strengthening the Spirit.
- Listen to our podcast Finding Hope and Meaning After Treatment.
I'm a cancer survivor and am wondering if I should seek counseling now that my treatment has ended?
The decision to pursue counseling is always very personal. As a post-treatment cancer survivor, you may be dealing with concerns that are different than those you had at the time of your initial diagnosis. The post-treatment phase may be a time to reevaluate purpose, direction, and priorities. We know that many cancer survivors have fears of recurrence and other anxieties that friends and loved ones may not fully understand. Speaking with a counselor can help.
CancerCare offers a number of ways to get support including counseling and support groups. A support group provides a safe place for people coping with similar issues to share and learn from each other. Many people find the opportunity to relate to others in this way enormously helpful and powerful.
You may also want to listen to our Connect Education Workshop, Managing the Stress of Survivorship.
Going forward, keep in mind that taking care of yourself emotionally is equally as important as looking after your physical needs.
One of the toughest times I have is when I go to bed at night. After I turn off the lights and am in the dark, my thoughts go immediately to my cancer and possibly dying from it and all the things I should do in preparation. Any suggestions?
Anxiety is very common among cancer patients. For some it occurs when they wake up, and for others, as they try to go to sleep. You mention three concerns which trigger anxiety as you’re trying to fall asleep. The first is turning off the lights, the second is the fear of dying, and the third is wanting to have your affairs in order.
The dark can be an especially scary place for people facing a life threatening illness. Absence of light is a metaphor of the darkness of unknowing. Try changing your bedtime routine – relax into your pillow with the light on. Like a child who sees monsters in the dark, turning on the light, even dimly, can provide comfort and a sense of control, allowing you to relax and fall asleep.
Your second concern, fear of dying, triggers a “fight or flight” reflex, hardwired into all of us for survival. Using mindful meditation, focus on your breath while non-judgmentally looking at your thoughts when your mind wanders, especially thoughts of worry. When you feel anxious, gently bring your focus back to your breath. Breath, specifically oxygen, is life, which fuels us, and aims to keep us in balance. Anxiety makes us take short breaths depriving our body and mind of oxygen and making us more anxious. When anxiety is high, take a deep breath, hold it for a comfortable amount of time, then release it, and repeat. You can do this for a few minutes or until you fall gently to sleep. You might also try listening to a pre-recorded guided imagery exercise, if you have difficulty meditating on your own.
Finally, thinking about unfinished business, especially if there is a perceived timeline, often makes people anxious. Putting one’s affairs in order does not mean giving up on life, it simply means taking care of, and continuing to invest in our lives. With the worry of cancer it can be hard to focus on individual tasks, thereby increasing one’s anxiety. Try writing down the things you need to take care of, and then prioritize them. Use creative visualization, by imagining yourself doing and finishing each task, and enjoying a sense of accomplishment as each task is completed. These visualizations can serve as a first step and increasing the likelihood of completion, which in turn can free you of the worry that is keeping you awake at bedtime.
To learn more about reducing anxiety, please read our fact sheet, Relaxation Techniques and Mind/Body Practices.
My treatments for cancer aren't always easy. More and more, I am thinking negative thoughts, which only increases my anxiety. What can I do to calm my mind and help make my treatment sessions go more smoothly?
We’ve all heard the saying, “We are what we eat.” No one disputes that since it’s apparent the food we put into our mouths replenishes cells and becomes our physical bodies. Less commonly heard is, “We are what we think.” This is because it is much less apparent what direct impact our thoughts play in our well being. Unlike food, which can be quantified and controlled, our thoughts are affected by external sources often outside our control including people, places and things. Now, the growing field of psychoneuroimmunology (PNI) shows that the mind and body are constantly communicating, back and forth.
If negative thoughts come up for you in managing your cancer, guided imagery exercises can help you counter them with positive thoughts, so the body can be more relaxed. One imagery exercise is called Creative Visualization, which is used in sports psychology, business and other areas where people confront challenges. It’s a simple technique that uses your imagination to envision an event as you would like it to happen.
Before receiving a chemotherapy treatment, you might take time to quietly sit and visualize how you would ideally like treatment to go. It helps to think about details such as what clothing you’re wearing, how the weather feels, or where you’ll be sitting or lying when you get your treatment.
During your treatment, you can continue to visualize the chemotherapy (or radiation or surgery) as it travels through your body and “confronts” the cancer cells. Use your imagination: employ super heroes (yourself or others), magic wands, or loved ones providing comfort, hope and strength to defeat the cancer. This technique can ease the mind’s tendency to worry and help you focus on “rallying” healthy cells and the immune system to defeat disease.
If you have difficulty coming up with your own Creative Visualization exercise, it might be easier to listen to a pre-recorded Creative Visualization exercise. You can find a large number of CDs and audiobooks on this subject by doing a search (using keywords “guided imagery” or “creative visualization”) at Amazon.com. Also, a good book on the topic is Creative Visualization: Use the Power of Your Imagination to Create What You Want in Your Life, by Shakti Gawain (New World Library Publishers).
I will have a new MRI this week and find out if the cancer treatment did what they wanted it to do. I know I will have MRIs for the rest of my life which I pray is very long. How do you not worry that it will come back? How do I just let it go and live my life?
Anxiety about recurrence is a natural and common part of cancer survivorship, but it does not have to take over your life. There are strategies you can use to manage and minimize your worries so that you can live your daily life and still do the things you enjoy.
For example, before each test, scan or follow-up visit with your doctor, write down all of your questions and concerns. The simple act of writing it all out in one place can be helpful in containing your anxiety, and you’re less likely to forget something that you wanted to ask your doctor. Take notes when you’re with the doctor: becoming more informed about your diagnosis can help you control your fears about things that might not be realistic or likely. Make sure to ask about ongoing steps you can take to improve your overall health or to reduce the likelihood that the cancer might return: are there certain foods you can add to your diet? Ways to increase your physical activity? Other activities to help lower your overall stress? Physical signs or symptoms you can look for to stay on top of possible recurrence?
Another way to minimize your anxiety is to schedule time for it each day (until you no longer need to do so as frequently). If you intentionally set aside a half-hour of your time to think and worry about a recurrence, you may find yourself thinking less about it during the rest of the day. Just make sure you stop thinking about it when your time is up (set an alarm if you need to)! If your worries and negative thoughts do spill over into the rest of your schedule, try not to judge them. Instead, ask yourself how they are helping you in that moment: Is it helpful to jump ahead to the future and imagine the worst? It might be more helpful to observe that you are feeling anxious but cannot know for certain what will happen, and then gently turn your thoughts toward the things you can control in your life. What can you still do and enjoy now?
Try visualization or imagery exercises to increase your mindfulness and awareness of the present moment. You can also increase the number of pleasant activities in your daily life. Make more time for play, rest, exercise, humor, music, art, nature, etc. Doing more of what you love will leave less time to worry. Even if your concerns about cancer recurrence remain in the background, they do not have to consume your life.
I am a newly diagnosed cancer patient. Needless to say, I'm on an emotional roller coaster as my life has changed drastically. The side effects have cause multiple issues, many not directly treatable and as a result I worry and experience anxiety on a number of issues: relationships, fertility, reoccurring cancer, finances and life expectancy. My question is how does a cancer patient find a therapist/psychiatrist (particularly one with experience with cancer patients)? Secondly, should cancer patients see a therapist or a psychiatrist?
I’m sorry that you are under so much stress and dealing with so much. It is perfectly understandable that you would have a lot of anxiety around these important issues. Because the mind and body are so connected, side effects from treatment often impact one’s state of mind as well. Getting emotional support as you face this experience is wise.
Here at CancerCare, we are oncology social workers and offer in-person counseling for people in New York City, Long Island, and some parts of New Jersey and Connecticut. If you live outside of those areas, we offer short-term telephone counseling to help you cope with your cancer experience.
To find a longer-term therapist in your area who is skilled in working with people affected by cancer, try:
American Psychosocial Oncology Society (APOS), which offers a free referral service to help you find a mental health professional (psychiatrists, psychologists, clinical social workers and other counselors) in your area: 866-276-7443.
Help Starts Here, through the National Association of Social Workers offers an online directory of clinical social workers, psychologists, psychiatrists, and other licensed professionals. You can search each database for clinicians who have experience in cancer issues.
Most therapists are social workers and psychologists, but some psychiatrists also provide therapy in private practice. Because of their medical training, psychiatrists are the only mental health professionals who can prescribe psychotropic medications. Many people see social workers, psychologists or other types of counselors for talk therapy while also seeing a psychiatrist for medication evaluation and monitoring, on a less frequent basis.
When choosing a therapist, one of the most important criteria to keep in mind is the rapport you have with him or her. You may have to shop around and it might take several tries. After each initial visit, ask yourself: How did I connect with that person? Does it seem like he/she “got” me? Can I talk freely with that person? Only you can decide which therapist is right for you. Pick someone with whom you can be open and honest, and who can support you through this challenging journey.
From the Archive: Questions about Lung Cancer
My 68-year-old husband was diagnosed with lung cancer in 2004, had radiation and chemo, and is currently in remission. Since ending his treatment, his personality has changed drastically and he directs his anger towards me. Can chemo affect a person mentally?
Chemotherapy can affect a person’s mood, as can other medications such as steroids. It is important that you and your husband inform his doctor of changes in his mood to rule out any medical causes. The change in his personality may also be a sign that he is still struggling emotionally with his diagnosis and treatment. Cancer can be overwhelming and bring up many feelings from anxiety to anger to sadness. As your husband’s primary caregiver, those feelings may be directed towards you since you are the one he is closest to and trusts. If you haven’t done so already, letting your husband know how his feelings and behavior affect you is important. Seeking couple’s counseling is also a good idea if you are having difficulties communicating with each other.
The end of treatment often can lead to many strong and conflicting feelings. When a person is first diagnosed with cancer, he/she is often focused on learning about the diagnosis and getting through treatment. This can delay the emotional impact of cancer and feelings may come up once treatment ends, as there is more time to think about what has happened. For more information on coping post-treatment read, After Treatment Ends: Tools for the Adult Cancer Survivor.
My husband has just been diagnosed with small cell lung cancer with small tumors in his liver. He starts chemo next week with 4 hours, day 1 and 2 hours, day 2 and 3. He repeats this every 18 days for six sessions. Is this the normal treatment for small cell lung cancer? Where would I look to find information on clinical trials?
Later-stage small cell lung cancer is characterized by a spread of the disease from the lungs to other organs such as the liver, and is normally treated with aggressive chemotherapy. Since the treatment is aggressive, it must be administered over a number of days for each session, and the sessions are spaced out with non treatment breaks of 18 to 21 days to make sure that the patient’s overall health is not affected. Patients whose tumors respond well to chemotherapy may be considered for a radiation treatment to the brain called Prophylactic Cranial Irradiation (PCI) in which the entire brain receives radiation with the intent of stopping the spread of the disease. For more information about the treatment of small cell lung cancer, please visit the National Cancer Institute’s website.
CancerCare collaborates with EmergingMed’s clinical trials matching service, which is designed to assist lung cancer patients in identifying and accessing clinical trials which may be appropriate to their medical situation.
How can I breathe with a lung after the pneumonectomy? Is there anything I should be doing?
A pneumonectomy is the surgical removal of one lung in which a lung cancer tumor involves all the lobes of that lung and is confined to only that area. A person with two normal lungs would be able to tolerate the impact of the reduced lung capacity on their breathing. However, people who have a history of smoking, emphysema, or bronchitis may not be candidates for this treatment due to their diminished overall lung capactiy. Age may also play a role as people over age 70 have a higher risk of complications from this procedure.
Be proactive with your doctor about what your recovery plan will be. A patient who has completed a pneumonectomy will be expected to undergo a course of pulmonary rehabilitation with a respiratory therapist, who will guide the patient through regular exercises and techniques designed to help maximize breathing capacity.
Learn more about the professionals who might be part of your recovery team in our fact sheet, “Your Health Care Team: Your Doctor is Only the Beginning”.
Listen to our podcast, The Importance of Communicating with Your Doctor About Follow-Up Care.
My sister has stage 4 non-small cell lung cancer as well as tumors in her liver. Are there two different chemotherapy treatments for both the lung and the liver or are they treated with the same drugs?
Stage 4 non-small lung cancer is characterized by the spread (also known as metastasis) of lung cancer cells through the bloodstream to organs outside the lungs such as the liver, brain, adrenal glands or bones. These cells attach to the new areas and begin to grow new tumors. The cells of the new tumor site, however, are lung cancer cells rather than liver cancer cells. So the chemotherapy your sister’s oncologist has chosen to treat the main tumor site in the lungs would also be considered the most appropriate treatment for the lung cancer tumors that have grown in her liver.
One of the benefits of chemotherapy used for Stage 4 lung cancer is not only that it’s treating tumors known to exist, but it is also working on other tumors that may be too small to be detected yet. That’s why chemotherapy is considered a systemic therapy – it treats cancer tumors throughout the body.
Find more information about treatments for lung cancer in our booklet, Your Guide to the Latest Research and Treatments – Highlights from the 2012 Annual Meeting of the American Society of Clinical Oncology.
CancerCare also offers a full range of free support services for people affected by lung cancer.
My best friend's husband has just started chemo for lung cancer but refuses to quit smoking. This is driving a huge wedge between the two of them. Does smoking impact the effectiveness of the chemo?
This is a common question that comes up for people diagnosed with and in treatment for lung cancer. Some lung cancer patients continue to use tobacco products either because the chemical addiction to nicotine is so strong that they are unable to quit, or they have found that smoking provides them with a soothing or calming effect in stressful situations.
A study featured at the 2006 Annual meeting of the American Association for Cancer Research (AACR) reported that nicotine stopped chemotherapy drugs such as gemcitabine, cisplatin and taxol—all of which figure prominently in first-line treatment of lung cancer—from killing cancer cells and significantly reduced the effectiveness of the treatment, according to the researchers.
In contrast, another 2006 research study, conducted by the M.D. Anderson Cancer Center, focused on the overall survival of late-stage, non-small-cell lung cancer (NSCLC) patients who quit smoking or continued to smoke during treatment. The study, which followed the survival experiences of 1,370 NSCLC patients from 1993 through 2002, found no significant difference in overall survival between these two groups of patients. Among those patients who did survive, however, and who had quit smoking at the onset of their treatment, the risk of developing a second lung cancer was significantly lower.
Your shared that your friend’s husband’s smoking is affecting their relationship. CancerCare’s oncology social workers often work with couples in situations like this and are able to help them develop new communications skills which can reduce stress and improve relationships. Please urge your friend to call us at 1-800-813-HOPE (4673).
I have stage 4 non-small cell lung cancer and now am receiving Tarceva. I'm trying to prepare for the future by exploring hospice and want support for my husband. Do you know what kind of pain I might expect?
There is no easy means of determining how late-stage lung cancer may progress. At times the process can be relatively benign and pain free; at other times, it may cause the person with cancer to deal with discomfort and pain. You have already identified one of the most appropriate resources for managing your situation – hospice care.
Hospice provides some of the best palliative care available and focuses on the patient’s physical, emotional and spiritual comfort. We encourage patients and family members dealing with late-stage cancer to contact local hospices as soon as possible. This gives patients and their loved ones the opportunity to develop a relationship with staff and ask questions (such as how pain and symptoms can be managed) and to determine what services could be helpful. Connecting with hospice often times results in peace of mind for both patient and family members, as needs can be assesed, questions answered, and important next steps identified.
For more information about hospice and end-of-life care, please consult the National Hospice and Palliative Care Organization’s website, Caring Connections.
Another resource is our publication, “Caregiving at the End of Life”. And remember that CancerCare’s professional oncology social workers assist lung cancer patients and their loved ones in situations similar to yours and can help them navigate their way through end of life care.
I was diagnosed with non-small cell lung cancer and am receiving chemotherapy. I've had two colds within a three-week period and also a low level of hemoglobin in my blood (the doctor has recommended erythropoietin treatments). Could these issues be diet related?
Chemotherapy for either small cell or non-small cell lung cancer tends to be fairly aggressive and can produce some difficult side effects. While chemotherapy is focused on destroying lung cancer cells it can also interferes with the production of the three types of blood cells: red blood cells, white blood cells, and platelets. Normally, just before you start a chemotherapy session, your doctor arranges for you to have blood tests to determine the effect the chemotherapy is having on your blood cells. Low counts of any of these cells may prompt either a change in dosage or frequency of treatment, or a need to take medication that can stimulate bone marrow production of the blood cells.
Your colds may be due to the chemotherapy’s suppression of the bone marrow’s production of white blood cells, which are the body’s infection fighters. If your doctor feels that your white cell count has significantly decreased, he or she may consider putting you on a medication for this condition. Ask your doctor whether this might be a possibility.
Similarly, the low levels of hemoglobin you mention may be due to low red blood cell counts caused by chemotherapy. Red blood cells carry oxygen and iron to provide the body with components necessary for energy. Red blood cells are an important factor in maintaining energy levels in our bodies and too few of them can result in fatigue and anemia. It sounds like your doctor believes an erythropoietin-type drug might be helpful in boosting your red blood cell count. While extreme low red blood cell counts are not normally related to diet, you might also want to ask your doctor for a referral to a dietitian who works with cancer patients to develop a meal plan that would increase your dietary intake of iron and help you maintain a healthy weight.
CancerCare offers publications that provide more detailed information on managing chemotherapy side effects.
I was diagnosed with stage IB non-small cell lung cancer. I had surgery (lobe resection) and my doctor gave me a referral to an oncologist for "adjuvant treatment," meaning chemotherapy. Why do I need to do this?
For a long time, it was believed that only surgery was necessary to achieve a successful outcome for lung cancer patients diagnosed with stage IB to IIIA non-small cell lung cancer. However, a number of recent investigational research studies provided evidence that patients who received both surgery as their primary treatment and chemotherapy as an “adjuvant,” or secondary treatment, reduced their risk of the cancer recurring. Unlike chemotherapy used as a primary therapy, adjuvant chemotherapy is usually shorter-term and has a fixed duration.
You should discuss any of your concerns about the side effects of chemotherapy with your oncologist before treatment starts. I do want to say that there are significantly fewer, less severe side effects in current-day chemotherapy treatments and much more can be done to address them.
For more information on lung cancer staging and treatment, read our booklets:
- Your Guide to the Latest Cancer Research and Treatments – Highlights from ASCO 2012
- Progress in the Treatment of Lung Cancer
View all of CancerCare’s publications about managing side effects.
My wife was diagnosed with stage IV non-small cell lung cancer (NSCLC) and we have health insurance. One of her chemotherapy drugs is very expensive and insurance only pays $1000 per chemo treatment. She is 63 and does not qualify for Medicare. We are looking at co-payment debt of over $100,000. Any suggestions?
We often find that the private health insurance we have is fine when you are healthy, but not sufficient enough when diagnosed with cancer. Unfortunately, you are correct that she must either be 65 years old or determined to be disabled by the Social Security Administration for 24 months before qualifying for Medicare. I suggest you begin the disability application process if you have not already. Certain cancer diagnoses qualify for expediting the application process (called Compassionate Allowances). You can find out more about the qualifications and can apply online or call to speak with a Social Security representative about your specific situation.
Co-pay foundations are independent charities that assist insured patients who qualify with the co-pay costs of their pharmaceutical products. Current charities that assist non small-cell lung cancer (NSCLC) patients are:
- CancerCare Co-Payment Assistance Foundation
- The Chronic Disease Fund
- The Patient Advocate Co-Pay Relief Foundation
- Patient Access Network Foundation
CancerCare also offers limited assistance for transportation, homecare, and childcare for patients who qualify. Some local divisions of the American Cancer Society may also have help with transportation to treatment as well as assistance with wigs.
The Patient Advocate Foundation’s trained case managers provide guidance and support and can intervene on your behalf regarding medical debt. They also maintain a network of volunteer attorneys.
Lawhelp.org provides referrals for affordable and/or free legal assistance programs in one’s area and advice about bankruptcy protection and other financial issues.
And finally, you may read our fact sheets about finding financial assistance in your community for further suggestions:
I'm in remission after having chemotherapy and radiation for small cell lung cancer. I've recently started having a shortness of breath when I'm at rest (doesn't seem to happen at work). Is there anything I can do?
The shortness of breath, or dyspnea, you are experiencing can be uncomfortable and frightening. The more you struggle for air, the harder your lungs work to get oxygen, and the more distressed you feel. It is extremely important to consult a medical professional to find out what might be setting this cycle in motion. Possible causes could be:
- a side effect of chemotherapy or radiation (which may reduce lung capacity)
- anemia, meaning your lungs don’t have enough red blood cells to deliver oxygen throughout your body
- a non-cancer lung condition, like asthma, COPD, or an allergy
- anxiety caused by fears of recurrence, the lasting emotional effects of having had cancer, or other types of stress
Contact the American Lung Association (1-800-LUNGUSA) for information on other possible causes of dyspnea. Depending on its source, a doctor may prescribe a steroidal or anti-anxiety medication, supplements, oxygen, or special exercises. The Lung Cancer Alliance has a very helpful video demonstration of breathing techniques to relieve dyspnea. Progressive relaxation, meditation, and guided imagery can all help reduce stress and anxiety. CancerCare has several Connect Education Workshops that address stress management in cancer survivors including Fear of Recurrence and Late Effects: Living with Uncertainty and Managing the Stress of Survivorship.
To prepare for your doctor’s appointment, keep a record of your breathing problems, with these questions in mind:
- When do you experience shortness of breath?
- When does it feel worst?
- How long does each episode last?
- What is going on around you before, during, and after each episode?
- Does anything make it feel better?
Take your record with you to your appointment. It is very important that a medical professional review your symptoms, especially if you’re also feeling faint and dizzy, if your heart is pounding, or if it’s difficult to breathe even at rest.
CancerCare has information on creating a survivorship care plan that can be used to personalize your post-treatment needs and communicate them to your health care provider.
Don’t be afraid to advocate for yourself so that your medical, emotional, and practical needs are addressed, and your quality of life is maximized.
My husband has been diagnosed with Stage IIIA non-small cell lung cancer that had spread to the mediastinal nodes. I have heard that the five-year survival rate for this type of cancer is 15% or approximately two years. Is this correct?
The American Society of Chest Physicians indicates that the five-year survival rate for Stage IIIA non-small-cell lung cancer (NSCLC) ranges from less than 10% to 40% and is dependent on the extent of mediastinal lymph node involvement. NSCLC type (squamous cell, adenocarcinoma or large cell carcinoma) may also influence survival rates.
It is important to keep in mind that the primary purpose of staging a cancer is to make sure that the correct treatment protocols are utilized, rather than to predict survival. Survival rates do not represent the experience of any individual lung cancer patient. They are statistical figures which are comprised of data collected on thousands of cancer patients and then calculated to develop the average or median computation for that very large group.
Many factors influence lung cancer survival including a patient’s age, overall state of health prior to diagnosis, healthy lifestyle, compliance to treatment regimens and response to treatment. Very often, newly diagnosed patients who join CancerCare’s lung cancer patient support groups have poor survival prognoses, yet survive for significantly longer periods than anticipated.
One valuable coping strategy we have learned from these group members over the years is “staying in moment.” Using our physical and emotional strengths on today’s issues, rather than trying to solve the unknowns of the future, appears to be one of the most effective ways of living each day with lung cancer.
You can also find comprehensive information about lung cancer on CancerCare’s website, www.lungcancer.org.
A friend and co-worker was just diagnosed with lung cancer and it's inoperable. As his friend and boss, how can I best help? What should we prepare for?
It’s important to bear in mind that while a cancer may be diagnosed at a stage where it is not operable, it may very well be treatable. Many lung cancer patients are diagnosed at a stage where surgery is not a viable option but where appropriate chemotherapy, targeted therapy or radiation therapy may result in better survivorship outcomes.
You may find it helpful to visit CancerCare’s website www.lungcancer.org which was created as a “first stop” for folks newly diagnosed with lung cancer in order to provide them with some basic information and the resources they may find helpful as they navigate a very new and sometimes difficult environment. You may also find that our fact sheet “What Can I Say to a Newly Diagnosed Loved One” offers you some guidance on how best to communicate with your friend.
You mentioned that you are also his boss. The Americans with Disabilities Act provides guidelines on how employers can provide reasonable accommodations for employees disabled with conditions such as lung cancer. You may be interested in reviewing the online publication “The ADA: Your Responsibilities as an Employer” to learn more about how reasonable accommodation may help your colleague continue to work to the extent that he is able to.
My husband has recently been diagnosed with stage 4 small cell lung cancer and can no longer work. How do we pay our bills? I still work, but I don't make enough money. Any advice would be appreciated.
The onset of cancer is a very difficult time for many families financially, with loss of income and the costs of treatment adding to the stress they must cope with. To locate possible resources, I’d suggest the following:
Visit the website of the Cancer Financial Assistance Coalition (CFAC), which offers a database that allows you to search for assistance by either diagnosis or resource type. In addition, there is information on finding assistance.
Order a copy of “A Helping Hand: The Resource Guide for People With Cancer, Financial Edition,” which is available free of charge through CancerCare’s publication order form.
Apply for disability benefits through the Social Security Administration.
The American Cancer Society also offers a searchable database for local resources that can help you find assistance.
My mother has had colon and breast cancer. She now faces a nodule in her lower right lung. Doctors say it is definitely cancer, but are not sure what type (lung cancer or metastasis of the colon or breast). Is a lung biopsy the only way to find out what kind of cancer it is?
Before treatment starts, it is extremely important that the doctor know exactly what kind of cancer is to be treated, as treatment varies with different kinds of cancer. The only way that the kind of cancer can be accurately identified is to have a section of tissue removed from the tumor or nodule so that it may be examined under a microscope by a pathologist, who can identify the cancer cell type and advise the patient’s doctor.
You and your mother may find the following articles from the American Society of Clinical Oncology’s website can provide you with some helpful insights on biopsies and their results:
How does one get compassionate care in clinical trials when there is nothing left in the way of lung cancer treatments?
We believe you are asking about “Compassionate Drug Use” also called “Compassionate Use,” which is the use of therapeutic drugs that have not yet been approved by the FDA to treat cancer, and no other treatments are available. These drugs are called investigational drugs and are usually only available to patients who are participating in a clinical trial. Use of these drugs outside of a clinical trials is extremely limited.
Requests for the compassionate use of an investigational drug must be made via a request from the patient’s doctor to the drug company requesting their permission for its use and their willingness to supply the drug for the patient’s use. If the drug company consents, and frequently they do not, then the doctor must ask the FDA for their permission to use the drug for his or her patient only. The request to the FDA must include detailed medical information about the patient, why the request is necessary, a proposed plan of treatment and the patient’s signed consent. The length of time for FDA approval varies, but may be expedited in emergency situations.
For more information on compassionate drug use, the American Cancer Society provides a helpful reference guide. Additional information can also be found through the FDA’s Expanded Access Program.
Don’t See Your Question Asked?
Browse the Frequently Asked Questions section of our Lung Cancer 101 feature for a number of shorter questions and answers about lung cancer.