Young adults coping with cancer face challenges that are unique from other age populations.
A cancer diagnosis is most often unexpected. That is especially true for young adults in their 20’s or 30’s. At this age, it’s normal to feel invincible, and to believe that serious illnesses like cancer can happen only to older people. Also, young adults are often misdiagnosed due to the misconception that cancer is an “older person’s disease”.
Young adulthood is a time when most people are focused on their education, career, dating, and starting a family. However, as a young adult with cancer, you may feel as if your life has been upended. New concerns may arise such as where to get the best medical care or how to pay for treatment-related expenses.
While there may be an adjustment period where you may delay goals related to your life plan, a cancer diagnosis does not have to keep you from living a full life. This e-booklet offers helpful guidance and support on how to cope with many of the changes, challenges and adjustments related to cancer, along with places to find support.
Managing your Treatment
After hearing the words, “You have cancer,” you may feel scared and overwhelmed. Learning as much as you can about your diagnosis may help you feel more in control. The relationship you have with your medical team can also make a huge difference in helping you cope in a positive way.
Here are some tips for managing your treatment and communicating with your health care team:
Get informed. The members of your health care team can provide accurate information about your diagnosis and treatment options along with referrals to valuable resources. Ask them to recommend reliable websites, organizations, books, or brochures that describe your diagnosis and your treatment. However, there is such a thing as too much information. Avoid using Google to inform treatment decisions; each individual will respond differently to treatment even with the same diagnosis. While credible information can help you feel more in control, too much information has the potential to cause anxiety.
The resources listed in the back of this booklet are also excellent sources of information. If you feel overwhelmed with the amount of research you need to do, ask a friend or a family member for help.
Prepare for your medical appointments. If you have questions about your care, you may find it helpful to write down your questions in advance. Prioritize them so that the most important questions are answered first. Write down your doctor’s answers or bring someone with you to take notes or serve as a second set of ears. If having someone attend appointments with you is not an option, ask if you are able to record the conversation using your cell phone. With the technology available, many young adults find it helpful to process the information at a later time, or listen to the information again with a friend or a family member. Remember, you can also ask for copies of your medical records.
Don’t be afraid to ask questions. If you are unsure what something means, let your doctor know. Make your questions specific and brief. Use “I” statements whenever possible—saying “I do not understand” is more effective than “You are being unclear.” Try repeating the information back to your doctor to make sure you understand what he or she is saying. If you are a visual learner, ask to see the X-rays or slides. Remember, this is your medical team and they are here for support, education and guidance. Sometimes it may feel as if you do not have enough time with your doctor or oncologist. It is okay to advocate for your needs as a patient. Read CancerCare’s fact sheet titled, “The Value of Assertiveness When Talking to Your Doctor” for more tips.
Bring up fertility preservation concerns. Cancer treatments can have a variety of long-term and short-term side effects on a person’s ability to conceive or carry a baby to term. Discuss fertility concerns with your doctor before, during, and after treatment. If your medical team has not addressed your concerns, be a self-advocate and continue to ask questions about possible side effects of treatment. If family planning is a priority, make sure your health care team understands this. Your health care team may refer you to a fertility preservation specialist so that you can explore options such as sperm or egg harvesting (storing for later use). Some of these options are costly, and few are covered by insurance at this time, but financial assistance programs are available for those who qualify. For comprehensive information about fertility preservation, contact Fertile Hope or The OncoFertility Consortium. You can also read CancerCare’s fact sheet titled, ‘Fertility Concerns: Resources and Support’ for more information.
Discuss your preferences. Your lifestyle and daily activities may influence treatment recommendations. Talk with your health care team about treatment goals and your preferences about treatment. For example, find out if treatment will interfere with your ability to continue working or going to school. If you have an important event coming up, ask if you can reschedule an appointment or round of treatment so you can attend. Scheduling adjustments may not always be possible, but you won’t know unless you ask.
Be your own advocate. Because you know yourself and your needs better than anyone, you are in the best position to talk with your health care team about any issues. You may have to take the lead in bringing up certain topics, such as fertility preservation or how much your treatment will cost. Do not hesitate to bring up any concerns so that you get the help you need. Read CancerCare’s fact sheet titled, ‘Communicating With Your Health Care Team’ for more information.
Help With Insurance Matters
Whether you are the primary insured or on another person’s insurance policy, talk to your insurance company about any concerns that you may have. Many companies will assign a case manager to help you clarify benefits and suggest ways to get other health services. You can also ask for help from an insurance broker or from the human resources staff at your workplace. CancerCare’s professional oncology social workers can also help you navigate the world of insurance policies and paperwork.
COBRA. If you recently left a job and were covered by an employer’s health insurance, you may be eligible to continue receiving insurance coverage under COBRA (the Consolidated Omnibus Budget Reconciliation Act). COBRA requires employers to make health insurance under their plan available to former employees up to 18 months after employment has ended. For more information, visit the website for the U.S. Department of Labor.
Disputing a claim. If you feel you have been denied a claim even though you are entitled to coverage, HealthCare.gov has a helpful guide on how to dispute claims with your insurer. Visit HealthCare.gov to learn more. Also, consider arranging a meeting with someone from the hospital’s financial office or billing department. You may be able to work out a monthly payment plan or get a reduced rate.
Some centers that provide reduced-cost health care, such as Hill-Burton facilities, administer care for free or on a sliding scale based on your income. These facilities are available in most states. To find a Hill-Burton facility near you, call 800-638-0742 or visit the website of the U.S. Department of Health and Human Services. Uninsured young adults may also be eligible to receive financial help for medical expenses through Medicaid. Read CancerCare’s fact sheet titled, “Coping with Cancer When You’re Uninsured” for more information.
A cancer diagnosis can magnify any financial burdens you are already facing. Fortunately, there are many financial assistance programs that help young adults affected by cancer. Talk to your health care team about your financial needs and referrals to resources.
Financial help for young adults with cancer exists in the forms of:
• Insurance reimbursement
• Co-payment relief
• Discounted or free medications
• Grants to cover practical costs such as child care and transportation to and from treatment
• Educational grants and scholarships
Visit CancerCare’s website (www.cancercare.org) and read our fact sheet “Sources of Financial Assistance” to learn more about finding financial resources.
Another resource is CancerCare’s A Helping Hand at www.cancercare.org/helpinghand. This is a searchable, online database of financial and practical assistance available for people with cancer. This comprehensive online tool features up-to-date contact information and descriptions for hundreds of national and regional organizations offering financial help to people with cancer.
School and Work: Adjusting Your Schedule
A cancer diagnosis as a young adult may require making adjustments to educational or career-related goals. Young adults with cancer are often able to continue with work or school by modifying their routines and schedules. Your teachers and co-workers may prove to be excellent sources of guidance and support should you choose to disclose your diagnosis.
Before returning to school, make an appointment with your school’s office of student affairs to discuss the transition back to student life. The office’s administrators can refer you to the appropriate health and financial resources, as well as discuss your school’s health services and student health insurance policy. Consider meeting with the staff in your student health center to make them aware of your medical history.
Many young adults are able to return to the workplace during or after treatment. But some may need to limit the number of hours they work per week, or choose to leave their job entirely. Tell your doctor about your typical workday, along with your treatment history, to help form a recommendation on whether you can return to work.
The Americans with Disabilities Act (ADA) helps protect the civil rights of people with a disability, which includes facing a cancer diagnosis. Talk to your supervisor or your human resources department and discuss accommodations that may help ease your transition, including a flexible work schedule or a re-evaluation of your job’s responsibilities and duties. Read CancerCare’s fact sheet titled, “Cancer and the Workplace” for more information on laws that protect patients.
A cancer diagnosis can be isolating, especially for this age group. You may feel that your diagnosis is yours alone to cope with, and perhaps feel the need to withdraw from others. This is normal; however, finding your support network is important. Allowing open communication with family, friends and loved ones may help you feel more supported in the long-term.
After a cancer diagnosis, young adults who have previously lived on their own sometimes choose to move back into their parent’s home temporarily. While this may feel like you are giving up your independence, remember that it is temporary. You will want to make sure that your emotional, practical and financial needs are being met during this time period. Be honest about your need for privacy and share your feelings and emotions with your parents. You may find them to be a strong source of emotional and practical support.
Watching a brother or sister face a cancer diagnosis is difficult for siblings of any age. They may want to help you in practical ways such as providing transportation to and from treatment or helping with household tasks. Encourage your siblings to talk openly with you. Let them know that they can support you by just taking the time to listen. Spend time together talking about subjects other than cancer.
Often times, you will find that friends and peers will not know how to respond to the news of your cancer diagnosis. While this may feel discouraging, do not be afraid to take the lead in reaching out to them. Be honest about what you need and what you feel like discussing. If your friends want to help, ask them to help you in specific ways such as running errands, providing transportation, or preparing meals. Although some friendships may change during this time in your life, focus on the friends who are able to listen to you and support you.
Spouses and partners
Most young adults do not expect their spouse or significant other to be diagnosed with cancer. The thought and fear of losing a loved one can be overwhelming. Sometimes this fear can drive an emotional wedge between partners and negatively affect communication. It is important for each of you to talk openly and honestly about your thoughts, feelings, and fears. Remember, you do not need to always talk about cancer. Discussing day-to-day topics can help bring back a sense of normalcy to your lives. If you find yourself needing support in talking to your partner, CancerCare can help by offering individual counseling to patients and to caregivers.
Intimacy in relationships
The way you feel about your sexuality may change as a result of your cancer. There are side effects to treatment and surgeries that may cause a decrease in self-esteem and sexual libido. Discussing sexuality with your partner may feel uncomfortable at first, but it can lead to a greater sense of emotional intimacy. Be honest about your feelings, and encourage your partner to be open about his or her feelings as well. Communication will become increasingly important as your relationship grows. Read CancerCare’s fact sheet titled, “Intimacy During and After Cancer Treatment” for more information.
Frequently Asked Questions
Q. My diagnosis was so sudden and serious that I did not have time to undergo fertility reservation before beginning treatment. Is it too late for me to ever have a child?
A. A cancer diagnosis can sometimes leave little time to consider long-term implications of treatment. Ultimately, the options for conceiving after cancer depend very much on your type of cancer and its treatment. Speak to your oncologist and a fertility expert to find out what options may be available for you. Generally, most oncologists recommend that women wait a minimum of six months after cancer treatment has ended before trying to get pregnant and that men wait two years after finishing cancer treatment. Visit www.fertilehope.org to read more about cancer and fertility.
Q. I am continuing to work while receiving chemotherapy. I am still able to do my job, but I often feel extremely tired from side effects. I don’t want to be let go from this job. Should I tell my supervisor about my fatigue?
A. The Americans with Disabilities Act prohibits employers from discriminating against people who have been diagnosed with cancer. You are not required to share your experience with your supervisor or any of your co-workers unless you are requesting accommodations that will allow you to do your job. Work with your supervisor to create a work schedule that suits your needs. Your supervisor may allow you to reduce your work hours, or allow you to work from home so that you won’t experience increased fatigue from your commute. You may also explore being temporarily reassigned to a new position that is less taxing for you.
Q. I have been working with my oncologist for about a month now, but I still do not feel comfortable with him. Am I allowed to ask to see a different oncologist?
A. It is important to feel comfortable with your health care team and satisfied with your care. Do not hesitate to ask any member of your health care team to recommend a different physician. You can contact your insurance provider to find another oncologist in your community under your insurance plan. You might also ask others for recommendations, or contact diagnosis-specific foundations.