Many survivors say they look at life differently: they don't take things for granted, and don't sweat the small stuff. A cancer diagnosis changes you as a person, something people around you may not fully understand. It may be helpful to join a group of survivors, either formally (in a support group) or informally (gather a few folks you have met along the way). Email and the Internet have created a wonderful support for all sorts of concerns, and survivorship is no different. CancerCare provides free counseling and support groups online and by phone. Stupid Cancer is an organization created for people under 40 that provides a community of survivors to connect with. No one understands this time better than someone who has been there, and this support can be very valuable.
After being diagnosed with cancer as a child or young adult, you may face challenges when returning to school or work or trying to reconnect with friends and peers. How you meet these challenges is unique to each survivor. For some, recovery from the trauma of cancer and its treatment can be made more difficult by complications of past treatment, which can affect quality of life. When emotions become too overwhelming, it may be helpful to seek a referral to a mental health professional. Signs of persistent depression and anxiety can include difficulty with sleep and daytime function, hopelessness, and thoughts of self-harm. These are indicators that professional help is needed. Ask your healthcare provider to recommend a psychological professional. Oncology social workers can also provide resources and referrals for ongoing mental health counseling. You can also search the Psychology Today’s Therapist Finder to learn more about practitioners in your geographic area.
If you are a student, your school may offer counseling and psychological services. These are usually offered as part of your tuition and fees. These counselors can be extremely helpful in navigating mental health issues in the context of pursuing your educational goals.
If you are working, you may want to start with your health insurance network of mental health providers or your employer’s Employee Assistance Program (EAP). Mental health services are required as an essential health benefit under the Affordable Care Act for most insurance plans. Contact your plan for a list of in-network providers.
Text based or online counseling is also an option. Talkspace is a text based platform that offers various types of virtual counseling and therapy. This can be a great choice if you live in an area where therapists may not be readily available.
Organizations for Support & Resources
The following websites and organizations offer support services and opportunities for survivors across the country, but make sure to look or ask your care team about for groups local to you as well!
American Association for Cancer Research (AACR)
615 Chestnut St. 17th Floor, Philadelphia, PA 19106
The Survivor and Patient Advocacy Program creates partnerships among cancer survivors, patient advocates, and scientific communities. Membership applications are available for cancer survivors who wish to become survivor advocates.
American Cancer Society: Cancer Survivors Network (CSN)
Provides a community of cancer survivors and families through online chats and message boards, the Cancer Survivors Network, and support groups.
American Cancer Society: National Cancer Information Center
Not sure where to find what you need? American Cancer Society’s Cancer Information Services connects patients and families with all kinds of resources 24 hours a day, 7 days a week.
American Childhood Cancer Organization
The American Childhood Cancer Organization provides information, support and advocacy information. This is a self-help network for parents of children with cancer. Services include support from other families, reading materials, a quarterly newsletter for parents and professionals, and a newsletter for children.
Bite Me Cancer
Bite Me Cancer is an organization that was started by a 19-year old with thyroid cancer. The group distributes teen support bags to hospitals around the country.
BMT InfoNet’s Caring Connections Program
This program matches bone marrow transplant patients and caregivers with survivors and experienced caregivers. Sign up online.
Camp Make-A-Dream Young Adult Survivors Conference (YASC)
YASC is a six-day, cost-free, medically supervised educational program in Montana designed to address issues of survivorship, provide information about being a cancer survivor, and develop lasting supportive relationships between young adult survivors. They also offer conferences and camps that target specific groups, including teens, parents and families.
Cancer.net has survivorship resources, steps to take after cancer, information about late effects, and rehabilitation.
Children’s Oncology Group
The Children’s Oncology Group provides guidelines and recommendations about long-term follow-up for cancer survivors. There is information available about different diagnoses, possible side effects from treatment, co-occurring conditions, finances, late effects, and emotional issues.
Stupid Cancer is a national cancer advocacy, research, and support organization. They work to create shared experiences through live events and digital content that end isolation, build community, provide education, and foster meaningful relationships that last a lifetime. They also hold a large annual conference called CancerCon for Young Adults.
Schooling, Employment & Insurance
There are many resources to help survivors, but it can take some homework to find what you need. In dealing with schooling and employment issues, you should learn about your rights and your school/employer's responsibilities under the law.
If you are attending college, it is important to register with the Office of Disabilities at your school in case any issues related to your cancer therapy arise or for help with management of chronic health conditions while in school. Additional financial aid may also be available for students impacted by cancer.
OncoLink's section on insurance, legal, employment and financial concerns may be helpful. LIVESTRONG Navigation Services (online or 1-855-220-7777) is a free resource that can help you find resources and address financial, employment, insurance and coping concerns. The National Coalition for Cancer Survivorship and the American Cancer Society websites have financial and insurance information for survivors. The Cancer Legal Resource Center provides information on cancer-related legal issues, including insurance coverage, employment and time off, and healthcare and government benefits. Cancer and Careers is a resource for all things employment-related, from time of diagnosis well into survivorship.
Other resources that might be useful include:
Fertility, Sexuality & Relationships
Personal issues related to sexuality or fertility can be emotionally draining, and can interfere with personal relationships at a time when you need them most. OncoLink's section on fertility & sexuality may be helpful. Organizations such as the Oncofertility Consortium and Resolve can help with fertility issues. The American Cancer Society provides fertility and sexuality resources. Your oncology team can recommend local counseling services if needed. CancerCare offers free counseling services by phone and online.