Resources for Adolescent, Young Adult, and Pediatric Cancer Patients

For teenagers and younger adults:

1. Cancer Explain by Foundation Medicine (YouTube video)
   • Summary: This is an introductory video of cancer and different cancer treatments
2. Adolescents and Young Adults with Cancer by National Comprehensive Cancer Network (NCCN)
   • Summary: This booklet explains cancer basics, cancer tests, and treatments. It is a very comprehensive guide for AYAs dealing with cancer. We hope this will lead you to get your best care plan.
3. Guidelines for Patients by NCCN
   • Summary: This is a comprehensive resource bank for people who want to learn more about different cancer types, cancer screenings, cancer treatments, and supportive cares dealing with distress or side effects.
4. Adolescents and Young Adults with Cancer by National Cancer Institute
   • Summary: This page includes some general information about types of cancers in young people, treatment choices, after treatment concerns, and organizations serving AYA population.
5. Cancer Center by Teens Health
   • Summary: easy-to-read website for teens to learn more about cancer basics, treatments, and many others

How cancer and cancer treatments affect AYA’s sexual health

Gynecologic Issues in Children and Adolescent Cancer Patients and Survivors
Summary: cancer and its treatment may have immediate or delayed adverse effects on reproductive health. This article provides information about cancer therapy toxicity and its impact on children’s and adolescents’ physiology.

AYA Fertility After Cancer

1. Fertility Preservation for Children Diagnosed with Cancer by SaveMyFertility.org (Northwestern University)
   • Summary: This webpage is designed to provide information about fertility preservation options available for adolescents and children. You can also use the Clinic/Center Finder link to find a fertility preservation center closest to you.
2. Preserving Fertility in Men with Cancer by American Cancer Society
   • Summary: This webpage provides information about different options for men to preserve fertility and it also options for men who are not fertile after cancer treatments
3. Preserving Fertility in Women with Cancer by American Cancer Society
   • Summary: This webpage includes information about options for women to preserve fertility and options for women who are not fertile after cancer treatment.
4. Teaching aid: Vaginal changes of menopause/female genital anatomy
5. See additional resources for male fertility and female fertility after cancer.

Support Groups and Additional Resources:

Resources and Support Groups for AYA in Iowa

1. UnityPoint Health DesMoines has an AYA cancer program (for ppl age 15-35) which provides individualized services including most up-to-date clinical treatment information, psychological counseling, fertility education, genetic testing, and nutritional education. It also has a social support group for AYA people to get involved.
2. UIHC AYA patients program (for age 13-31) provides AYA patient care during and after treatment. Right now, it focuses on the people who are diagnosed with Leukemia and lymphoma, Neuroendocrine and neurological cancers, Sarcoma, and Thyroid cancer
3. Adolescents and Young Adults with Cancer by National Comprehensive Cancer Network
   Summary: This book is provided freely by the NCCN aiming to help you get the best care plan for AYAs with cancer. It explains which cancer tests and treatments are recommended by experts on cancer in AYAs. It is a very comprehensive guide.
4. Vulvar Skin Care Guidelines by Dr. Colleen Stockdale
   Summary: The goal is to promote healthy vulvar skin.  This is done by decreasing and removing chemicals, moisture, or rubbing (friction).  Products listed below have been suggested for use because of their past success in helping to decrease or relieve vulvar/vaginal burning, irritation, or itching.
5. Yoga for Pelvic Pain from the Mayo Clinic
   Summary: Your health care provider recommends that you do certain yoga poses one or two times a day to help with pelvic pain. The yoga poses are gentle stretches that help promote muscle relaxation and decrease pain.

Nationwide Organizations/Resources for AYA

1. Stupid Cancer: This organization is created by Matthew Zachary, who was diagnosed with brain cancer during his senior year of college in 1995. It is a great place to network with other young cancer adults. The Stupid Cancer organization holds annual OMG! Cancer Summit; the Stupid Cancer Show, a weekly online radio program; and local social events held around the country, including meetups, tweetups, boot camps, and barbecues. It is also a good place to search on available financial, mental, employment opportunities, and insurance assistance.
2. Livestrong: Adolescents & Young Adults: It is a good website for AYA people to learn more about fertility preservations, parenthood options, survivorship, and other cancer survivors stories
3. Young Survival Coalition: a good website aims to help young women with breast cancer to learn more about different cancer types, treatments, and fertility impacts. There are also many ways to connect with other people through this organization like discussion board and online video support groups available via Facebook.
4. SeventyK: aims to educate AYA cancer survivors more about cancer and different treatment types

Dilators

1. Vaginal dilators for radiation therapy by OncoLink, Penn Medicine, 2021
2. Vaginal changes after radiotherapy to the pelvis, New South Wales government publication, Australia
3. Recovering after pelvic radiation therapy – a guide for women. Centre for Medical Psychology and Evidence-based Decision–making, University of Sydney, Australia
4. International Guidelines on Vaginal Dilation after Radiation Therapy, National Forum for Gynecological Oncology Nurses, UK, 2012

Pediatric Cancer Basics

Imaginary Friend Society by Pediatric Brain Tumor Foundation (YouTube video)
Summary: this film series goes over kid’s common concerns about cancer, cancer treatments, and treatment-related emotions.

How Cancer and Treatment Affect Children’s Fertility

1. Effects of Cancer Treatment on Fertility by Kids Health
   • Summary: This article talks about risks of treatments and some preservation options for kids.
2. Fertility Preservation for Children Diagnosed with Cancer by SaveMyFertility.org (Northwestern University)
   • Summary: This webpage is designed to provide information about fertility preservation options available for adolescents and children. You can also use the Clinic/Center Finder link to find a fertility preservation center closest to you.

Support Groups And Additional Resources:

1. American Childhood Cancer Organization: recommend books for families who have a kid with cancer. Families can order free resources from this website:
2. Sunshine Kids: This organization provides various exciting, positive group activities to kid cancer survivors throughout the year.