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Caregiver Frequently Asked Questions
Providing care and support to a loved one can be challenging. Caring for yourself, while supporting a loved one is important. Cancer Caregiving 101: A Caregiver’s Toolkit provides helpful information for anyone taking on the caregiving role.
In addition check out the Frequently Asked Questions below. These questions and answers have been suggested to us by cancer caregivers. No matter the type of cancer or the age of the person with cancer, you will find some of these answers informative. We encourage you to look through the topics and questions below to find what resources may be helpful to you in your particular situation.
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Becoming a Caregiver
What is my role as a cancer caregiver?
There are many different resources that can help you understand the caregiving role including: Cancer Caregiver Support, Caregiving Basics, Caregivers, Staying Healthy While You Provide Care for Someone with Cancer, and Caregivers of Cancer Patients
How do I support a loved one when I do not live near them?
Check out these articles for ideas: Long-Distance Caregiving and 5 Tips for Long-Distance Cancer Caregivers.
What resources are available to help me understand how to care for my loved one?
Depending on the cancer and its treatment caregiving may require assisting with drain care, changing dressings or other unfamiliar tasks. Ask your care team any questions you have. Additional resources include: Caregiver Support Video Series, Caregiving at Home, and Informal Caregivers in Cancer
Sometimes caregiving is hard. What do I do if I feel overwhelmed?
The most important think you can do is ask for help. Check out these resources for more information: Caregiving | Handling Burnout and Coping with the Stress of Caregiving, Cancer.
How to I take care of myself?
This is an important question because you have to take care of yourself in to make sure you are providing quality care to your loved on. Check out these resources to learn more: Caregivers Taking Care of Themselves, 5 Tips on Self-Care for Caregivers to Avoid Caregiver Burnout, If You're About to Become a Cancer Caregiver, Caring for the Caregiver: 25 Ways to Care for Yourself, and Staying Healthy While You Provide Care for Someone with Cancer.
Are there resources for LGBTQ+ caregivers?
There may be challenges to caregiving for LGBTQ+ individuals. Visit National LGBT Cancer Network LGBT Caregivers for more information.
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Important Topics After a Cancer Diagnosis
How do we prepare for cancer appointments, what should we ask the care team?
These pages will help you plan for your appointments: Questions to Ask Your Health Care Team and Communicating With Your Health Care Team .
How can I understand all these new cancer terms?
The National Cancer Institute has a dictionary of over 9,011 terms related to cancer and medicine.
Who is on the care team?
Your Cancer Care Team explains the members of your care team. You can also check out: People in Health Care - NCI (cancer.gov)
Where can we learn more about a cancer diagnosis?
There is a lot of incorrect information on the internet. Your care team is the best source of information. Reliable sources on the internet reliable sources include National Comprehensive Cancer Network and American Cancer Society.
Where can we learn more about cancer scans?
The cancer team is the best source of information about cancer scans. You can also learn more at Imaging (Radiology) Tests for Cancer and Exams and Tests for Cancer | American Cancer Society.
Where can we learn about treatment?
Treatment options may vary by the stage and grade of your cancer. There are recommended websites for treatment information like Chemo Care, American Cancer Society, and the National Cancer Institute.
So much happens at appointments, how do we remember what was discussed?
Triage Cancer offers some ideas.
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Treatment Decisions
What is the standard of care for the type of cancer my loved one has?
National Comprehensive Cancer Network (NCCN) has guidelines that can be reviewed by caregivers and patients.
How do I support my loved one as they make treatment decisions?
There are resources that can help you understand the caregiver role including Making Treatment Decisions Caregivers Booklet and Understanding Your Options and Making Treatment Decisions.
Should we seek a second opinion?
Check out these resources to learn more about second opinions: American Cancer Society and Cancer Care.
What about clinical trials?
Clinical trials may be a good option for some individuals and there are a wide variety of clinical trials available. Ask the care team about available clinical trials Learn more at: Cancer Treatment Videos, and What You Need to Know About Clinical Trials.
Where can we find clinical trials?
You can search for clinical trials at ClinicalTrials.gov, Find a Clinical Trial | Cancer Support Community, and Find NCI-Supported Clinical Trials - National Cancer Institute.
My loved one is worried about losing her/his/their hair. Are there any options?
A process called scalp cooling or cooling caps has had some success with limiting hair loss. If not covered by insurance, there may be financial assistance. Check with your care team and these other resources: Hair to Stay and Sharsheret for assistance.
My child has cancer, what do I need to understand about treatment?
Childhood Cancer: Questions to Ask the Health Care Team provides a list of question to ask your care team about treatment choices.
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Side Effects
Where can we learn more about side effects from treatment?
Some good websites that discuss side effects are Chemo Care, Managing Cancer-related Side Effects, Side Effects of Cancer Treatment, and Chemo Experts.
We are experiencing changes in our sexual relationship. Are there resources to help?
Changes in sexual relationships are common in cancer. Check out these resources: National Cancer Institute and American Cancer Society.
My loved one is losing their hair. What should we know about wigs?
Information about wigs can be found at Choosing and Wearing a Wig; Wigs: Types, Care, Costs; Wigs for Cancer Patients. Your care team can also be a resource for information about wigs.
My loved one is having issues with their stomach, taste and constipation or diarrhea. Are there resources to help?
It is important to report all side effects to your care team, they may be able to assist with:
- Appetite loss - Appetite Loss and Cancer Treatment and Appetite Loss
- Constipation - Constipation and Cancer Treatment and Constipation
- Diarrhea - Diarrhea and Cancer Treatment and Dehydration
- Nausea and Vomiting - Nausea and Vomiting and Treatment and Nausea and Vomiting
My loved one is struggling with pain. Who can help?
Sometimes pain can be treated by your oncologist. At other times a referral to Symptom Management may be right for you. Managing Pain After a Cancer Diagnosis and Developing a Cancer Pain Control Plan | Treatment & Support may also be a helpful tool.
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Insurance and Finances
What about insurance?
Cancer treatment can be expensive. Ask if your cancer center has a financial navigator; they can minimize out-of-pocket costs by maximizing insurance and applying for co-pay assistance. A social worker may also be of assistance. It may be helpful to educate yourself on insurance for cancer treatment.
How do we know what providers our insurance will cover?
You can get this information from your health insurance company. Learn more at Understanding Your Insurance Coverage and Health Insurance for Cancer Patients.
Can we appeal a decision made by the insurance agency?
If you question a decision made by your insurance company, know that there is an appeals process. The Patient Advocate Foundation has case managers who can help with the appeals process.
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Fertility and Family Planning
Will my loved one’s cancer affect our ability to have children?
If you and your partner are interested in having children in the future, ask your provider if there is future risk of infertility before starting treatment. Learn more from these organizations Alliance for Fertility Preservation, Save My Fertility, and Livestrong Fertility Program.
How do we pay for fertility prevention / treatment?
Insurance may not always pay for fertility preservation. However, some have had success with getting coverage through an appeal process. Learn more in this quick guide and find other options for assistance.
Is fertility preservation possible for my child with cancer?
It may be a possibility. Learn more here: Preserving Fertility in Children and Teens with Cancer
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Families and Parenting
How will cancer impact our family?
Understanding cancer’s potential impact on the whole family is important. Learn more Helping Children When A Family Member Has Cancer and Family life.
What do we tell our children?
There are some resources that can help: When Your Parent Has Cancer, Helping Children Understand Cancer, and Helping Children and Teens Understand When a Parent has Cancer.
How do I help our children through my loved one’s treatment?
There are practical tips available from the American Cancer Society. There are also support services available for children including but not limited to Bright Spot Network, Ele's Place and Camp Kesem.
My child has cancer. How can I help my child and the rest of the family?
These resources may help: Support for Families When a Child Has Cancer, Support for Families: Childhood Cancer, and Supporting a Child With Cancer.
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Psychosocial Support and Mental Health
Cancer seems to be bringing stress into our relationships. Is that common?
Sometimes this happens. Learn more at Relationships During Treatment | Livestrong
How can I support my loved one with cancer?
A cancer diagnosis sometimes leads to issues with anxiety and depression. Check out these resources to learn how you can help Supporting How to support Someone with Cancer and Emotional, Mental Health, and Mood Changes (cancer.org)
What options are available for caregiver social support groups?
Ask your care team if there are local support groups or check out groups offered online: Cancer Support Community Greater Ann Arbor, Gilda's Club Grand Rapids, Gilda's Club Metro Detroit (virtual options available).
What are other options for social support?
Imerman Angels will match you with people with cancer and caregivers to people with a similar age and cancer experience to talk with. My Lifeline is an online discussion board.
Is it normal to feel anxious or depressed?
Yes, breast cancer can bring changes to your body, finances, and relationships. Feelings of fear and isolation can also occur. The American Cancer society provides helpful information. It is okay to ask for help in coping with your diagnosis and treatment.
- Check with your care team about mental health counselors in your area.
- If you have thoughts of hurting yourself, ask for help right away. This might mean calling your care team to ask for help, going to the Emergency Room, calling 911 or the National Suicide Hotline at 1-800-273-8255.
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Employment
What impact will cancer have on my loved one’s ability to work?
Cancer treatment may require time off of work. These resources provide more information: Cancer and Careers, and Triage Cancer.
What if my loved one is unable to work?
Triage Cancer many of these questions: Leaving Work, Family Medical Leave Act (FMLA), Disability Insurance, and Americans with Disabilities Act
What options do I as a caregiver have for time off of work?
Cancer and Careers and Triage Cancer also provides information for caregivers.
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Support
Family and friends have asked how they can help. What should I suggest?
Lend Them a Helping Hand was developed to help organize support for families with cancer. The following resources may be helpful: American Cancer Society and Alex's Lemonade Stand Foundation for Childhood Cancer.
Is there something that can help me share information with family and friends?
Yes, Cancer Support Community’s MyLifeLine.org that can help with this.
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When Treatment Ends
As treatment is completed the caregiver’s role often changes. Eventually the need for caregiving related to the cancer diagnosis will become less needed or come to an end.
My loved one has finished cancer treatment. What should I expect now?
Coping – Caregiving after Cancer Treatment Ends - NCI provides helpful information
We are happy treatment is complete. Why are we feeling anxiety?
Common Feelings After Cancer Treatment | Cancer Survivors | CDC provides additional resources.
What are healthy lifestyle practices to prevent cancer recurrence?
Check out this article from American Cancer Society for Can I Do Anything to Prevent Cancer Recurrence?
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End-of-Life Care and Loss
How do I support my loved one at the end of their life?
These resources offer suggestions: End-of-Life Care and Care Through the Final Days.
How can I cope with the loss of my loved one?
It is hard to lose a loved one to cancer. Grief is a process. Check out these resources to learn more: Seeking Help and Support for Grief and Loss;Grief and Loss;Grief, Bereavement, and Loss; Bereavement.
How can I support my young children and teens after the loss of a loved one?
Information can be found at Helping Children Who Have Lost a Loved One. Young parents sometimes chose to leave birthday cards or video recordings to help keep their memory alive.
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Other Important Topics
How do I get involved in advocating for people with cancer/cancer caregivers?
Cancer advocacy groups address a variety of issues of interest to patients. Check out these organizations: Cancer Advocacy | American Cancer Society Cancer Action Network and National Coalition for Cancer Survivorship.
What is the risk to my loved one’s family members?
Some cancers come from genetic changes and others do not. Ask your care team if genetic testing is recommended for you and check out these resources: American Cancer Society, FORCE, and Sharsheret.