This Month: Children and Cancer
Answered by Victoria Puzo, LMSW
Last week I told my son that I had cancer and we have barely spoken about it since. What can I do to help support my son?
As a caring parent you want to help your son understand what you are going through. Children want to know the facts and how they will be affected.
Children, and especially teens, are mostly focused on themselves and their own day-to-day life. You may notice your child is still focused on school, friends, and other activities. That doesn’t mean your child is ignoring your diagnosis. It takes time for a child to mentally process this kind of information and he may not completely understand the implications of your diagnosis until he notices physical changes or if there are disruptions in day-to-day life. Here are some age-specific strategies for communicating with children about cancer:
If your son is under 5, he is likely to ask you a question or bring up your cancer when he is most closely engaged with you one on one. His questions will most likely be brief and concrete, such as: What does your cancer look like? Does the medicine taste bad? He may be scared that cancer is contagious or that he might get cancer too. Your answers should be brief, factual and in words he understands.
Children ages 6-11 typically are more interested in the mechanics of treatment. The “killing” of cancer cells and seeing your treatment as a “battle” or “fight” — whether or not you yourself use these images — is very likely how your son will think of your experience. Some parents are comfortable using this language; others may choose to describe their experience using non-violent imagery. Either way is okay.
If your son is a teenager, he will be wrestling with a variety of conflicting thoughts and feelings. He will want to ask questions but may not want to add to your stress by asking questions or showing concern. He may feel sad about the situation but think it is “unmanly” to have that feeling. He will be certain that none of this “shows” at all but you will see it clearly in his face and demeanor. If you ask him questions he will most likely tell you that he is “fine.” Try not to force the conversation and give him space to process his emotions on his own.
No matter what age your son is, he will let you know when he is ready to talk. There may be times when you need to start the conversation because you are going to lose your hair, or need to rest more, or will be hospitalized. In these cases, be factual, brief, and use words you know your son will understand. Children and teens like to be kept in the loop and the more they are informed, the less anxious they will be when these changes happen. Also, periodically check in with your son, ask if he has questions or wants to talk in order to show him that you are comfortable talking about it and that you are available to talk whenever he is ready.
Here are some additional tips:
- Let your child know that you are always available to answer their questions
- Try to keep family time consistent. When possible, eat meals together, have a movie night, etc.
- Ask your child if there are aunts, uncles, school counselors or other professionals (social workers, psychologists) that they would like to talk to about how they are coping. Sometimes children are more comfortable talking to someone other than the person who is diagnosed
- Find age-appropriate support groups for your children that will help them feel connected to other children who have a similar experience
Here are some publication and book recommendations for further information:
- Helping Your Children Cope with Your Cancer by Peter Vandernoot (Hatherleigh Press, New York)
- Kemo Shark by Kidscope, Inc. (www.kidscope.org). A cartoon illustrated book featuring “Kemo” the shark who explains how chemotherapy works to fight cancer. Also available in Spanish. Ages 3-12.
- What About Me? A Booklet for Teenage Children of Cancer Patients by Linda Leopid Strauss. A book addressing the specific needs of teens when their parent has cancer.
I have a 14-year-old son who doesn't seem to want to talk about my cancer at all. I know it's hard for him, but it also can't be good for him to keep things bottled up. What should I do?
Teens are at a stage in life when they are trying to develop their own identity, sense of self, and independence. Your son’s not wanting to talk about your cancer is a common reaction many teens have. Teens may feel that their questions or concerns might be hurtful or even scare the parent. It’s important for you to keep communicating with him and show him that it is okay to talk about feelings and ask questions. Ask him what he already knows or thinks about cancer and try to provide concise information that will clear up any misinformation he may have gotten from peers or the internet. Keep him up to date about your cancer and treatments, and let him know that if he has any questions or concerns he can always talk with you about them.
It’s important to respect his privacy and to offer him additional support that may be helpful to him. Identifying a relative like an aunt or uncle, or a teacher, coach, or school counselor with whom he can talk more openly can give him a sense of feeling more in control of his situation, and allow him to voice questions or concerns he may not want to with you.
If you haven’t done so already, I would also encourage you to inform his school. Teachers and school counselors can be supports for both your son and yourself. They can watch for and inform you of any concerns or behavioral changes your son may be displaying, and can advise you should they feel your son might need additional professional help.
The following publications may help as you navigate the sometimes tricky territory of having cancer while parenting a teen:
- CancerCare’s Helping Teens When a Parent Has Cancer
- CancerCare’s Helping Children When a Family Member Has Cancer
- How to Help Children Through a Parent’s Serious Illness by Kathleen McCue and Ron Bonn (St. Martin’s Press: 1994)
- When a Parent Has Cancer : A Guide to Caring for Your Children by Wendy Schlessel Harpham, MD (Harper Collins: 2004)
Answered by Other Experts
Are there books written specifically for children that can help them understand and cope with a parent's cancer diagnosis?
After talking to your child about a cancer diagnosis, books can be a helpful follow-up to encourage learning more about cancer, exploring feelings and asking questions. It can also be a nice opportunity to spend quiet time together or give your child some autonomy to learn independently. Books are available for different age groups and developmental stages. It is important to choose books that are appropriate for your child by not only looking at the recommended age on the book, but also by looking through the book in its entirety.
The American Cancer Society offers:
- Mom and the Polka Dot Boo Boo tells a story about a young mother’s journey through breast cancer (ages 2-5)
- Our Mom Has Cancer helps children understand and cope with a parent’s cancer (ages 5-12)
- Our Mom is Getting Better and Our Dad is Getting Better helps children understand a parent’s special needs when recovering from active treatment (ages 5-12)
- Because Someone I Love Has Cancer offers activities to help children navigate a loved one’s cancer experience (ages 6-12)
KidsCope has a free comic book called Kemo Shark to help kids understand cancer and chemotherapy.
The National Cancer Institute has excellent free booklets to help teens cope with cancer:
- When Your Parent Has Cancer: A Guide for Teens
- When Your Brother or Sister Has Cancer: A Guide for Teens
If you choose to share books with your child about cancer, be sure to check in with them to see if they have questions about what they read or if they want to talk about it.
My daughter is having separation anxiety now that she knows about my cancer. She also wakes me up every night saying she is scared. She won't go to sleep without me. Any suggestions?
Children who have a parent with cancer often experience separation anxiety. They may be reluctant to go to school or to a friend’s house, or they may be afraid when a parent has to leave them to go to the doctor or even on an errand. Because fear is often driven by the unknown, it is important to make sure your children know about your cancer and how you will be cared for to give them as much peace of mind as possible. In addition, when you leave the house to go somewhere, tell your children where you are going and when you expect to return. Leave a contact number where they can reach you in case of emergency. By including your children in your cancer experience and daily routine, they have some control and participation, and may feel less helpless.
It’s common for children’s fears to come out at bedtime. They may feel more emotional because they are tired, or the natural separation of going into their own bedroom may trigger anxiety. If you haven’t already, set up a bedtime routine for your daughter that is comforting, such as listening to music, reading a story, or talking. Spending peaceful time with her before she falls asleep will help her relax and feel safe. It is also important for children developmentally to learn to self-soothe. Teach her techniques she can try should she wake up during the night, such as reading to herself or listening to a recorded story in your voice. Reinforce that you are safe in bed nearby. Establishing routines and communicating with her about your cancer should help alleviate some of her fears.
For more information about communicating with children about a cancer diagnosis, read CancerCare’s Helping Children When a Family Member Has Cancer. The American Cancer Society also has a helpful guide, Helping Children When A Family Member Has Cancer.
You might also want to seek counseling for your daughter so that she can express and work through her fears. Our staff of professional oncology social workers are knowledgeable in children’s issues related to a parent’s diagnosis, sibling or other loved one. To speak with a social worker, call us at 1-800-813-HOPE (4673) or email firstname.lastname@example.org.
My 7-year-old daughter is sure she did something to cause my cancer. What can I say to her to convince her otherwise?
It’s normal and expected for children to fear they have somehow caused a parent’s cancer. When children don’t understand something they sometimes use “magical thinking” —the belief that one can bring about an event by thinking about it or wishing for it. By continuing to think she caused your cancer, your daughter is likely telling you she loves you, is afraid, and has no other explanation other than she must have done something to cause it.
You have already taken the first step to help your daughter, which is to take her concerns seriously. The next step is to plan a talk with her addressing her feelings and providing accurate information. Simply telling your daughter that she didn’t cause your cancer is not enough—you need to give her an explanation that she can understand.
Pick a quiet time when you and your daughter will not be rushed or interrupted, and sit next to her or hold her hand so she feels safe. It is important to praise your daughter for talking to you about her thoughts and feelings and encourage her to continue. You can also let her know that many children worry that they caused their parent’s cancer, but it’s not actually possible. Our booklet, Helping Children When a Family Member Has Cancer, offers suggestions on what you might say to your child including:
“Mommy (or daddy) is sick with an illness called cancer. The cancer happened on its own—nobody did anything to make it happen. I have very good doctors, and I am going to do everything possible to get better.”
Your daughter may accept this explanation, or may want more concrete information. Depending on her level of maturity and interest, you may use books or the internet to help her learn more about your cancer. Make sure to preview any materials or websites before sharing them with her and allow her to continue to share her feelings.
I've been recently diagnosed and I'm not sure quite how to tell my kids. Is it ever a good idea to not tell them?
Disclosing a cancer diagnosis to children is never easy. It is common for parents to wonder whether their children will be better off not knowing about their diagnosis. However, children sense when something is wrong and being honest with your children will help them feel secure and confident that they can trust you. It will also prevent them from coming up with even scarier possibilities.
When disclosing your diagnosis, choose a quiet time when your children are well rested. Prepare what you would like to say beforehand so that you feel comfortable with the language you choose to use. Many parents find it helpful to have this conversation with their spouse or another adult present.
When explaining cancer, use simple and age-appropriate language. Explain your treatment and prepare your children for the changes they can expect. Reassure them that they will continue to be cared for throughout your treatment. Encourage your children to ask questions. If you don’t know an answer to their question, be honest and let them know that you will try to find out.
For more information, please read CancerCare’s publication Helping Children Understand Cancer: Talking to Your Kids about Your Diagnosis.
You may also want to read a story together about cancer and its side effects. The American Cancer Society has several books that can be helpful when explaining cancer to children:
- Our Mom Has Cancer helps children understand and cope with a parent’s cancer (ages 5-12)
- Our Mom Is Getting Better and Our Dad Is Getting Better helps children understand a parent’s special needs when recovering from active treatment (ages 5-12)
- Because Someone I Love Has Cancer offers activities to help children navigate a loved one’s cancer experience (ages 6-12)
KidsCope has a free downloadable comic book called KemoShark that helps explain cancer and chemotherapy to children.
To speak with an oncology social worker for more information and guidance regarding supporting children affected by cancer, call 800-813-HOPE (4673).
I've recently started treatment and I'm trying to find things that can help support my 13-year-old such as groups, counseling, etc. Do you have recommendations?
Children and teenagers experience a range of feelings after a loved one is diagnosed with cancer and it is common for parents to wonder how they can best support their children. While some teenagers may outwardly express their fears, questions and concerns, others may be less expressive. Let your son/daughter know that you are available to talk when he/she is ready. Encourage him/her to come to you with questions and that if you don’t know an answer you will work together to find it out.
Together with your son/daughter, identify the people he/she would feel comfortable turning to for support. For example, you, other family members, teacher, school social worker, religious advisor or family friend. It can be helpful to inform your child’s teacher and school social worker about your diagnosis so that they can provide additional support to your son/daughter at school.
In addition to individual support, teenagers can benefit from participating in a support group. Teenagers often feel isolated and alone as they cope with the cancer diagnosis of a loved one and support groups provide the opportunity for teenagers to meet others who know what it’s like to have a loved one with cancer. This gives them a safe space to express how they feel, give and get support from their peers and learn healthy coping skills.
The Cancer Support Community lists support centers in several states that provide support groups for children and teens. You may also want to speak with the social worker at your hospital or treatment center about local services available for children and teens.
The American Cancer Society may also provide a listing of support services available in your area. They can be reached at 1-800-227-2345.
To learn more about supporting a teen when a loved one has cancer, please read Helping Teenagers When a Parent Has Cancer. An additional resource you may find helpful is our Connect Education Workshop, Helping Children and Teens Understand When a Parent or Loved One Has Cancer.
CancerCare offers free telephone counseling and support to parents who have been diagnosed with cancer. To speak with an oncology social worker for more information about finding the right type of support for your child based on his/her unique needs, call our Hopeline at 800-813-HOPE (4673).
My 5-year-old nephew has lost an eye due to retinoblastoma. He has started asking questions we do not know how to answer (e.g., What does cancer look like? Was I born with it?). How do we answer these questions and ease his anxieties?
When talking to children about a cancer diagnosis, it’s important to provide honest, age-appropriate answers. For instance, when the child asks if they were born with cancer, you can tell them that the cancer happened on its own—nobody did anything to make it happen. There may also be questions that you may not know the answers to and it’s okay to simply say “I don’t know,” which is an honest answer.
The reason why we stress being honest when talking with a child about cancer is that by doing so, you’re letting the child know that you can be trusted. For more information about talking to children and helping them cope with cancer please read our booklet, Helping Children When a Family Member Has Cancer.
Children may not have a clear understanding of what cancer is, which is why we recommend using arts, crafts, toys, and games to assist in talking about cancer. For example, you can take a small piece of clay and place it on a doll to show where the cancer is located. One might also draw a picture of a person to show the child where the cancer is located on the drawing.
It can be helpful to read books which are specifically written to help children understand cancer and its treatment. Kemo Shark is a downloadable comic book that is designed to help kids understand cancer and chemotherapy.
At times, counseling may be useful to assist children in working through the feelings behind their questions. If you think this might be helpful for your nephew, CancerCare’s professional oncology social workers can help you find local children’s counseling services. Please call us at 1-800-813-HOPE (4673).
This is a hard time of year for us as my wife has cancer. Would you recommend any books about talking to and doing the best for our kids?
When coping with a cancer diagnosis, families often experience a variety of changes and adjustments during the holidays and other significant events. Discussing and preparing for these changes with your children can open up dialogue, elicit questions and help you to understand what your child is feeling. Although certain rituals or customs may change, it can also be helpful to honor old traditions as a way of maintaining a sense of normalcy for your children. Remember that cancer doesn’t have to be the focus of the holidays, and you have discretion over how much room cancer gets during your celebration.
Books can be helpful tools or supplements to reinforce language and ideas to help children cope with a parent’s cancer diagnosis, but should not replace a conversation. The holidays may be an opportunity to have such discussions, as you are likely joining together as a family to reflect on the past year and to make plans for the year ahead.
When selecting literature to help you talk to your children, consider your child’s age, developmental stage and maturity level. Being honest allows children of any age an important opportunity to ask questions and express how they feel. You may not have all the answers, but you can remind your child that you will always be available for them to ask.
For more information about coping with the holidays and communicating with children about cancer, read CancerCare’s Coping with Cancer During the Holidays and Helping Children When a Family Member Has Cancer, or review the following books to help you navigate these conversations:
- How to Help Children Through a Parent’s Serious Illness by Kathleen McCue and Ron Bonn (St. Martin’s Press: 1994)
- Helping your Children Cope with your Cancer by Peter Vandernoot (Hatherleigh Press: 2006)
- When a Parent Has Cancer : A Guide to Caring for Your Children by Wendy Schlessel Harpham, MD (Harper Collins: 2004)
I have cancer and have been struggling to be a “normal” parent. My biggest challenge is disciplining my children because I feel guilty that I’m tired and not available as much to them. Is there any info out there about raising children while living with cancer?
Your question is one that we often hear. Without a doubt, cancer can impact your home life, and this disruption may cause a change in your children’s behaviors. Children want consistency and actually like guidelines, but it may be harder to set boundaries when you are not feeling well due to your diagnosis or its treatment.
There are some things that you can do to reduce stress, and perhaps make things a little easier in your home:
- Give hugs and say “I love you”: The primary need of children is safety and security. Let them know that they are loved and heard, and that in no way did your cancer impact your love for them.
- Allow yourself “me time”: As a parent – with cancer or not – it is vital that you remember to take care of yourself. Self-care is rejuvenating; it fuels the system both physically and emotionally. It is also a good lesson to impart to your children.
- Be on the same page: Explain to your children, in age-appropriate terminology, your cancer and what the treatment will be. Use the word “cancer.”
- Be available: Let your kids ask questions, and give honest responses.
- Explain your treatment and what the side effects might be ahead of time: Prepare your children for the “what ifs.” Hair loss, fatigue or nausea may be side effects of your treatment. Maybe they want to meet your oncologist, or see where your treatment will be. Seeing, touching and feeling can make things less scary.
- How you act and react is most likely what your children model their behavior on: A parent who reacts to their cancer by shutting down, having life revolve around the diagnosis, and creating a home life ensconced in cancer may have young ones mimicking that behavior. A parent who acknowledges the cancer, addresses the possible limitations, yet continues to live, is building resilience in their children.
- Let the school know: The more people on your children’s team, the better. Inform the principal, guidance counselors and teachers of your diagnosis.
- It is okay to ask for help: Others want to help, and letting them do so is a gift you give them. Take friends up on their offers. Think about what might help you, and ask.
- Draw a “circle of love”: Younger kids are visual. Sit down with them and help them draw a picture of all the people who love them. Let them know that if you aren’t here for them, all these other people will make sure that they are “okay.”
- Journaling: Older kids may have questions for you that they are uncomfortable asking. Give them a book they can jot their questions in and leave by the side of your bed. This will allow you to open up a meaningful discussion.
- Schedule in some fun: Cancer is part of your life, but don’t allow it to be your family’s whole life. Watch a funny movie, dance and sing in the kitchen, work on crafts. Continue to grow, learn and explore as a family.
The most important thing to remember is that while you may have cancer, your children are so happy to have you there. As a parent, you are a symbol of safety and security, and just having you nearby can bolster your children’s sense of comfort.
Two good books that might be helpful to read for more information include:
- Raising an Emotionally Healthy Child When a Parent Is Sick by Paula Rauch, M.D. and Anna Muriel, M.D.
- When a Parent Has Cancer: A Guide to Caring for Your Children by Wendy S. Harpham.
A teacher asked me (a school social worker) how to help an 8-year-old student with his/her own cancer diagnosis and loss of hair. Any advice?
Children who are diagnosed with cancer face unique challenges and adjustments. Parents, teachers and other caretakers often struggle with how to explain cancer and its effects. When speaking with this child’s teacher, you may want to consider the following points.
Children understand simple and clear explanations best. Provide concrete, age-appropriate information when speaking to this student. Explain that there are special medications that they will need to take that will help stop the cancer from growing. These medications may also cause his/her hair to fall out. Some children will want to hear a more detailed scientific explanation while others will be satisfied with more general information. Reassure the child that hair loss is temporary and explore whether he/she would feel most comfortable wearing a hat, scarf or wig in the meantime.
It is common for children to feel an array of feelings when they begin losing their hair including anger, sadness, embarrassment and fear. Let this child know that it is safe to express those feelings to you and his/her teacher. Validate the way they feel and remind him/her that although it is upsetting to deal with these side effects, it means that the treatment is working hard to stop the cancer and make his/her body healthy again. You may also want to preemptively prepare this child for questions his/her classmates may ask and come up with ways the child will feel most comfortable responding. While some children would rather not discuss their diagnosis with classmates, others may be more open with regards to what they are going through. There is more than one right way for the child to interact with their classmates and understanding your student’s specific wishes can inform the way you and the child’s teacher help the child’s classmates support the child with cancer.
You may find the following books helpful when explaining cancer and its side effects:
- Chemo, Craziness & Comfort by Nancy Keene is a book for children between the ages of 6-12 that provides clear explanations about cancer and treatment.
- KidsCope has a free comic book called KemoShark that helps explain cancer and chemotherapy
The American Childhood Cancer Association provides books to families with a child with cancer free of charge. Educating the Child with Cancer: A Guide for Parents & Teachers edited by Ruth Hoffman is a book for parents and teachers that provides guidance regarding the impact of cancer on a child’s education. It is free for families and for the child’s teacher.
For more information, support or guidance, call us at 800-813-HOPE (4673) to speak with an oncology social worker.
I am seeking a support group for children under age 12 whose single mother is in stage 4 cancer. Please provide any available options.
Our Connecticut office currently offers a support group Crafting Ways to Cope for Children Who Have a Parent With Cancer. This group is for children ages 5 to 12 who have a parent with cancer. The group is led by an oncology social worker and offers craft activities as a way to help children ask questions, express feelings and share concerns about their parents.
Otherwise, you probably want to check with the mother’s treatment center to see if they provide a children’s support group. You can also contact your local affiliate of Cancer Support Community in order to get more information about what type of children’s program they offer.
CancerCare provides a number of publications, including Helping Children Understand Cancer: Talking to Your Kids About Your Diagnosis that address helping children who have a family member with cancer. Communication is the number one priority, since even young children can often sense when something is wrong, and if no one explains what is happening, will often imagine something worse than it really is, or even blame themselves. How and how much is communicated depends on the child’s unique personality, but providing an ongoing chance for them to express themselves, asking questions and sharing their feelings, is helpful for children of all ages.
Finally, it’s important to let children know that even though some other things around the house are probably going to be different for a while, that the child’s parents/grandparents/family members love for them hasn’t changed a bit.
How do I find financial help for a friend whose daughter has cancer (age 5)?
Families with children undergoing cancer treatment often face overwhelming financial costs. In addition to the medical costs, many parents find that their child’s intense treatment schedule can lead to loss of income and other unexpected expenses such as transportation and lodging.
There are a number of national organizations that can provide limited financial assistance for treatment-related expenses, including CancerCare and the National Children’s Cancer Society. You may want to recommend that your friend contact these organizations directly to find out if their family is eligible for assistance. You may also refer them to our fact sheet, Financial Assistance for Children and Teenagers.
It can be challenging to find help with daily expenses, such as rent, utilities and food. There may be local organizations that provide assistance for families facing serious childhood illnesses. The best way to learn about these local organizations is often the social worker at the child’s cancer treatment center. You may want to recommend that your friend find out more about local resources by dialing 211. This number will connect to the local United Way, which can link families to community programs.
Your friend is fortunate to have your support, as cancer treatment can place significant stress on a family. One of the easiest ways that you can help your friend and reduce the stress on this family is to provide practical support. You may want to ask this person directly if there are other ways you can help their family, such as offering to provide child care if there are siblings or running an errand. This type of practical assistance from a friend can provide a measure of relief to caregivers.
A cancer diagnosis has a profound effect on families, and a childhood diagnosis comes with its own unique challenges. It can be difficult to talk to young children about cancer, and to know how to help them communicate their feelings and fears. Your friend may want to check out CancerCare’s fact sheet Supporting a Child With Cancer.
CancerCare’s professional oncology social workers can also help in locating additional financial assistance and provide support and resources around caregiving for a child with cancer (800-813-4673).
Can you advise on the best method of obtaining educational support for my daughter who has fallen behind at school and needs more specialist support to catch up with her peers? She is seven, and was originally diagnosed with cancer at age four.
It’s common for children who have been diagnosed with cancer at a young age to need specialized educational support during and/or after their treatment. This can be due to many factors including frequent absences from school due to treatment or hospitalizations or the lingering effects that treatment may have on learning.
First, I recommend speaking with your daughter’s teachers to express your concerns and to find out whether her teacher has concerns about her academic progress as well. Her teacher may recommend that your daughter undergoes an evaluation however either way, you may request that your child is evaluated based on your own concerns. Usually a request for an evaluation must be submitted in writing to either your daughter’s school or school district.
Your daughter will then be evaluated by a several professionals. A typical comprehensive evaluation includes testing of academics, attention, memory, language, psychosocial and other areas of development. As part of the evaluation, the school district may request supplemental information from your daughter’s doctor or oncologist. After the testing, members of the school or school district will meet with you to discuss the results. Depending on the state you live in, there are specific qualifications for eligibility for educational support services. If your daughter qualifies for services, an Individualized Educational Plan (IEP) will be developed and services will then be initiated. Parents are included in the IEP development meeting. For more information about how this process works in your state, please visit your local school district’s website. You can also call your state’s department of education for additional information. If your daughter does not qualify for services after being evaluated and you disagree with the findings, you have the option of participating in a hearing process. Your school district’s office or your state’s department of education can provide more information on this process as well.
In addition to speaking with your daughter’s teachers, it is a good idea to speak with your daughter’s pediatrician regarding your concerns. If your daughter does not qualify for in-school services, your pediatrician may be able to provide information and referrals regarding arranging outside services that may be covered by insurance. He or she can also provide referrals to a child psychologist or neuropsychologist, if that’s needed.
CureSearch for Children’s Cancer has additional information on this topic in their Guidance for Parents section on their website. If you need additional support or information, feel free to reach out to CancerCare’s Hopeline at 800-813-HOPE (4673) to speak with an oncology social worker.
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.