Young adults coping with cancer face challenges that are different than people of other age groups.
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. While it is rare, each year cancer is diagnosed in more than 70,000 adolescents and young adults (ages 15-39).
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 find yourself confronting different concerns, such as where to get the best medical care or how you’ll pay for treatment-related expenses.
While you may have to delay some of your goals, a cancer diagnosis doesn’t have to stop you from living your life. This booklet offers helpful advice on how to cope with many of the changes and adjustments related to your cancer, and places you can turn to for 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 can help you feel more in control. The relationship you have with your doctors and nurses can also make a huge difference in helping you cope.
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, treatment options, and referrals to valuable resources. Ask them to recommend reliable websites, organizations, books, or brochures that describe your diagnosis and your treatment.
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 many 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. 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.
Bring up fertility preservation concerns. Cancer treatments can have a wide 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. 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.
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. Don’t hesitate to bring up any concerns so that you get the help you need.
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.
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.
If you feel you have been denied a claim even though you are entitled to coverage, the Kaiser Family Foundation has a helpful guide on how to dispute claims with your insurer. To learn more, visit www.kff.org. Arrange 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.
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
Stupid Cancer has a resource listing of financial assistance grants and scholarships for young adults. Visit www.stupidcancer.com, to learn more.
The Cancer Financial Assistance Coalition has a searchable online database of national and regional organizations that provide financial assistance and other services for people with cancer.
Visit CancerCare’s website www.cancercare.org and read our fact sheet “Sources of Financial Assistance” to learn more about finding financial resources.
School and Work: Adjusting Your Schedule
A cancer diagnosis may require that you make adjustments to your education or career plans and goals. But it doesn’t have to interfere with all aspects of your life. Young adults with cancer are often able to continue with work or school by modifying their routines. Your teachers and co-workers may prove to be excellent sources of guidance and support.
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 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.
A cancer diagnosis can feel like a solitary experience. You may feel that your diagnosis is yours alone to cope with, and perhaps feel the need to isolate yourself from others. On the other hand, confronting a cancer diagnosis may bring you and your loved ones closer together. Keeping the lines of communication open with the people in your life can allow you to feel more connected to a network of support.
After a cancer diagnosis, young adults who have previously lived on their own sometimes choose to move back into their parent’s home temporarily. Do not think of moving in with your parents as giving up your independence, but as a way to ensure that your emotional, practical, and financial needs will continue to be met during this difficult time. 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.
Your peers may not have very much experience with cancer, and may not know how to respond. 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 fear of losing a loved one can be overwhelming. Sometimes this fear can drive an emotional wedge between partners. 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.
Intimacy in relationships
The way you feel about sexuality may change as a result of your cancer. 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 honest about his or her feelings as well. Communication will become increasingly important as your relationship grows.
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.