Adolescent-Young Adult (AYA)

Survivor Internet Resources

Community Building and General Information:

Website Address Description https://cactuscancer.org/ https://elephantsandtea. com/ https://stupidcancer.org/ https://www.cancer.net/ navigating-cancer-care/ youngadults-and-teenagers https://www.nccn.org/ patients/guidelines/content/ PDF/aya-patient.pdf https://www.youngsurvival. org/

Open your smartphone camera and aim it at this QR code.

Cactus Cancer Society’s mission is to provide a safe space where young adults facing cancer can connect, cope, and thrive with one another in an online community through creativity and expression.

Elephants and Tea’s mission is to help adolescent and young adult (AYA) patients, survivors, and caregivers know they are not alone in their fight with cancer. The “Elephant” in the room is cancer. “Tea” is the relief conversation provides. They have the only magazine written for and by the AYA cancer community where they can tell their story in their own words.

Stupid Cancer helps to empower everyone affected by adolescent and young adult (AYA) cancer by ending isolation and building community. Cancer survivors can connect with other cancer survivors with the same diagnosis.

The American Society of Clinical Oncologists has patient information on AYA survivorship.

National Comprehensive Cancer Network has a guideline for adolescents and young adults with cancer.

Young Survival Coalition is a group focused on facing breast cancer in young adults together. They have local chapter meetings in Portland.

Website Address Description

https://www. manuptocancer.com/ https://cancerdudes.org/ about/ Cancer Dudes empowers men to thrive after cancer. https://ulmanfoundation. org/# https://www. cancersupportcommunity. org/

Man Up to Cancer inspires men to connect and avoid isolation throughout their cancer journeys. They are changing what it means to “Man Up” in the face of cancer.

Healthy Behaviors:

The Ulman Foundation changes lives by creating a community of support for young adults and their loved ones who are impacted by cancer.

The Cancer Support Community, or Gilda’s Club, offers support for cancer survivors beyond treatment.

Website Address Description

Cancer Screening https://www.cdc.gov/ cancer/dcpc/prevention/

Healthy Living https://www.nccn.org/ patients/guidelines/content/ PDF/survivorship-hl-patient. pdf

All cancer survivors should follow the routine screening recommendations from their doctor. The recommendations will be based on the diagnosis and cancer treatment history. The goal is to help prevent new cancers through screening and early detection.

Survivorship care includes recovering from cancer and promoting health. This guide from the National Comprehensive Cancer Network includes information on physical activity, food and supplements, weight, and preventing infections.

Stopping Tobacco Use and Vaping

https://mainequitlink.com/

Maine Quit Link provides evidence-based support for quitting all forms of tobacco and vaping.

Website Address Description

Nutrition https://www.cancer.org/ healthy/eat-healthy-getactive/eat-healthy.html

Physical Activity https://www. exerciseismedicine.org/ assets/page_documents/ EIM_Rx%20for%20Health_ Cancer.pdf

Sleep https://www.cancer.gov/ rare-brain-spine-tumor/ living/symptoms/sleepdisturbance

Mindfulness

MaineHealth.org/ LendingLibrary

Managing Symptoms:

Good health starts with good nutrition. The American Cancer Society has tips and recipes to help you and your family make healthy food choices.

Physical activity plays an important role in cancer prevention, recovery, and treatment. The American College of Sports Medicine has done research and has released exercise guidelines for cancer survivors.

A brain or spine tumor, side effects from treatment, or cancerrelated anxiety can all be reasons for having problems with your sleep. Talk to your physician about your treatment options.

Contact the Learning Resource Center to request physical, electronic and audiobooks relating to Mindfulness Based Stress Reduction.

Website Address Description

Anxiety https://www.cancer.g ov/ aboutcancer/coping/ feelings/anxietydistress- pdq https://www.mainehea lth. org/cancer/cancersupport-resources/ oncology-socialworkers

The National Cancer Institute offers support for anxiety.

MaineHealth Oncology Social Workers offer services to help cope with anxiety.

Website Address Description

Anxiety

Meditation and Relaxation Apps: available for download on Google Play: https://play.google.com/ store/apps or the Apple App Store: https://www.apple.com/ app-store/ https://mainehealthlrc. overdrive.com/

The Generalized Anxiety Disorder Workbook: https:// mainehealthlrc.overdrive. com/media/2517961

The Worry Workbook: https://mainehealthlrc. overdrive.com/ media/3750712

Physical Rehabilitation https://www.cancer.org/ treatment/survivorshipduring-and-after-treatment/ be-healthy-aftertreatment/what-is-cancerrehabilitation.html

Lymphedema (swelling)

www.lymphnet.org

Learning skills such as meditation and mindfulness can be helpful in survivorship. There are several apps available to practice these skills:

• Insight Timer: Meditation

• Calm: Sleep, Meditate, Relax

• Headspace: Mindful Meditation

The MaineHealth Learning Resource Center makes it easy to get the information you need to make health decisions for yourself and your loved ones. They have a wide variety of resources available, including health and wellness books, eBooks and audiobooks.

Cancer and its treatment can cause physical, psychological, and cognitive problems. These problems can make it harder to do daily activities or return to work. Cancer rehabilitation can help with these problems, which can happen during and after cancer treatment. The American Cancer Society has more information about physical rehabilitation. Referral is recommended and you can discuss your options with your physician.

The National Lymphedema Network is dedicated to promoting the awareness of lymphedema (swelling) and empowering people with lymphedema to live life to the fullest.

Website Address Description

Cognitive Issues https://www.can cer.gov/ aboutcancer/treatmen t/ sideeffects/memory / cognitiveimpairment-pdq

Neuropsychology testing may be helpful to assess information processing, attention, memory and executive functions. For some people, school or work accommodations may be needed to support daily activities. Interventions such as cognitive behavioral therapy may be helpful. You can find more information about cognitive issues on the National Cancer Institute webpage. You can discuss your options with your physician or counselor.

Tinnitus (Ringing in the ears)

Tinnitus Retraining may help with ringing in the ears, and is offered by some audiology centers. Referral is required. You can discuss this option with your physician.

• Northern Light Mercy Hospital ENT, Portland (207-535-1150) https://www.nidcd. nih.gov/ health/tinnitus

Genetics

• Fagan Center for Audiology, Portland (207-228-9758)

• Audiology Center of Maine, Ellsworth (207-430-3714)

Website Address Description https://www.maine health. org/mainemedical-center/ services/cancerinstitute/ cancerrisk-preventionclinic

The Cancer Risk and Prevention Clinic at Maine Medical Center’s Cancer Institute is for people who are concerned about their own risk or other family members’ risk of cancer. Although most cancers are not “inherited,” some families have a higher risk of cancer and could benefit from early detection or steps to lower their risk. The experts at the clinic help patients and their families understand how their genes may affect their risk for cancer and how they can manage this risk. They can help you to understand your options and to choose the best one for you and your family.

Website Address Description https://www.facingourris k. org

FORCE’s (Facing our Risk of Cancer Empowered) mission is to improve the lives of individuals and families affected by hereditary breast, ovarian and related cancers. FORCE also has a peer navigator program for peer support.

Sexuality, Body Image, and Fertility:

Website Address Description

Sexuality in People Assigned Female at Birth https://www.cancer.gov/ about-cancer/treatment/ side-effects/sexualitywomen

People assigned female at birth being treated for cancer may experience changes that affect their sexual life during, and sometimes after, treatment.

Sexuality in People Assigned Male at Birth

https://www.cancer.gov/ about-cancer/treatment/ side-effects/sexuality-men

Sex Therapy

https://www. psychologytoday. com/us/therapists/ maine?category=sex - therapy

LGBTQIA+

https://www.escapeayac. org/

Body Image

https://www.cancer.gov/ about-cancer/coping/selfimage

People assigned male at birth being treated for cancer may experience changes that affect their sexual life during, and sometimes after, treatment.

Licensed Sex Therapists address the physiological processes associated with sexual dysfunction. You can speak with your physician about this option.

The mission of Escape is to provide a sense of escape for LGBTQIA+ adolescent and young adult cancer patients, survivors, and caregivers.

Cancer and its treatment can change how you look and feel about yourself. You can check out the National Cancer Institute for some ways to cope.

Website Address Description

Fertility

https://www.savemyfertility. org/ https://www.livestrong. org/what-we-do/program/ fertility http://www. allianceforfertility preservation.org/ https://www.reprotech.com/ vernas-purse/

SaveMyFertility.org is an authoritative resource for adult cancer patients and the parents of children with cancer who want to learn more about preserving their fertility before and during cancer treatment. They also provide information and guidance to oncologists, endocrinologists, and other health care providers concerned with the reproductive health of cancer patients and survivors.

Livestrong Fertility is dedicated to providing reproductive information, resources, and financial support to survivors whose cancer and its treatment present risks to their fertility.

The Alliance for Fertility Preservation is a nonprofit organization. The Alliance is made up of a team of professionals who have chosen to join together to advance the field of fertility.

ReproTech strives to make fertility preservation services available to all individuals who are facing fertility-threatening treatment. They are proud to offer a generous financial assistance program to patients faced with financial challenges, particularly at a time when it is hardest to handle.

Work, Finances, Scholarships and Grants:

Website Address Description

Work https://triagecancer.org/ https://www. cancerandcareers.org/en

Triage Cancer is a national, nonprofit organization that provides free education on the legal and other day to day issues that may impact individuals diagnosed with cancer and their caregivers, through events, materials, and resources.

The mission of Cancer and Careers is to empower and educate people with cancer to thrive in their workplace by providing expert advice, interactive tools, and educational events.

Website Address Description

Finances

https://www.mainehe alth. org/cancer/cancersupport-resources/ oncology-socialworkers http://www.thesamf und. org/ https://www.mainehe alth. org/Cancer/CancerSupport-Resources/ Oncology-FinancialCounselors

MaineHealth Oncology Social Workers offer support to address financial concerns and help to access appropriate financial resources and services.

Samfund programs provide support for young adult cancer survivors in the United States as they recover from the financial impact of cancer treatment.

Through direct financial assistance and free online support and education, Samfund grants help young adults move forward towards their personal, professional, and academic goals.

Scholarships

https://cancerforcoll ege. org/ https://www.scholars hips. com/financialaid/ collegescholarships/ scholarships-bytype/ cancerscholarships/ https://www.lls.org/ll s- scholarship-bloodcancer- survivors

Grants

https://allysonwhitney. org/

MaineHealth Oncology Patient Financial Navigators can answer any questions you may have about paying for treatment and help with billing and payments. This is a free service.

Cancer for College provides need-based college scholarships and educational experiences to cancer survivors.

To help students fighting cancer afford an education, numerous cancer foundations have created scholarships. To find additional awards, you may search for free college scholarships at Scholarships.com.

The Leukemia & Lymphoma Society (LLS) Scholarship for Blood Cancer Survivors provides up to $7,500 to cover tuition for virtual (online) or in-person vocational, two-year, or four-year undergraduate education.

The Allyson Whitney Foundation primarily provides young adult cancer patients, between 16 and 36 years old with “Life Interrupted Grants™” to ease their financial burden so that they can focus their energy on healing.

Support programs and Camps:

Website Address Description

www.dempseycenter .org https://www.crcofw m.org/ https://www. bethwrightcancer center. org/ https://ww w. campsunshi ne.org/ https://firstdescents. org/

The Dempsey Center is a local center for AYA support groups, adult counseling, wellness activities, grief and bereavement, and the buddy to buddy program. The Healing Tree Youth and Family Services provides programs and services for children, teens, parents and guardians. They have locations in South Portland, Lewiston and a virtual center called Dempsey Connects.

Cancer Resource Center of Western Maine provides resources and services that enhance the lives of individuals and loved ones facing cancer. This resource is only available for those in Oxford county.

The Beth C. Wright Cancer Resource Center grew from their vision of providing education and support for cancer patients and their families by offering free programs in a warm and welcoming environment. They have a location in Ellsworth as well as some virtual (online) options.

Camp Sunshine provides retreats combining respite, recreation, and support, while enabling hope and promoting joy. This program is for children with life- threatening illnesses and their families, through the various stages of a child’s illness.

First Descents (FD) is a recognized leader in outdoor adventure programming. Through outdoor adventures, skills development, and local adventure communities FD improves the long-term survivorship of young adults impacted by cancer. Our participants experience free outdoor adventure programs that empower them to climb, paddle, and surf beyond their diagnosis, reclaim their lives, and connect with others doing the same.

This list is for you to use as a helpful tool to find resources and information. This does not mean we endorse any particular provider, concept or resource listed in this document.