Resources
The following resources provide reliable information about genetic testing and hereditary cancer syndromes. If you have questions, please talk to your team.
Support Groups through Wilmot Cancer Institute:
- Adult Brain Tumor Network: For those with a diagnosis of a primary brain tumor and their caregivers. Currently meets via Zoom on a Monday from 7 to 8:30 p.m.
- Caregivers Group: Information and support for caregivers of individuals with any form of cancer. Currently meets via Zoom on the second Wednesday of the month from 2 to 3:30 p.m.
- Gastro-Intestinal Cancer Support Group: For those with pancreatic, colorectal, liver, esophageal, stomach and other GI cancers and their care partners. Currently meets monthly, with an option to join in person in Webster or via Zoom.
- Lynch Syndrome Support Group: For those who have Lynch syndrome (a genetic predisposition to cancer) or their family members. Meets virtually from 7 to 8:30 p.m. four times a year: January, April, July and October.
- Melanoma/Skin Cancer Support Group: For those with melanoma or skin cancer and their care partners. Currently meets on the third Wednesday of March, June, September and December from 5:30 to 7 p.m.
- Support for People with Oral, Head & Neck Cancer (SPOHNC-Rochester): The group is a local chapter of SPOHNC (Support for People with Oral, Head & Neck Cancer) for those with oral, head and neck cancers and their caregivers. Currently meets on the first Thursday of the month (except July) from 5-6:30 p.m. Participants may join in person or via Zoom.
- Young Adult Leukemia Forum Support Group: For Wilmot Cancer Institute patients ages 19 to 39 with a diagnosis of leukemia. Currently meets the fourth Wednesday of each month from 5 to 6:30 p.m. on Zoom.
Support groups provide opportunities to connect with others who are facing cancer and to share experiences, ideas and support with each other. Through Wilmot Cancer Institute, support groups are available for many different specific conditions. These programs are free and open to the public. Please note that due to COVID-19, many support groups are still meeting via Zoom or participants may have the option to meet in person or by Zoom. For more information about these support groups or to be added to a group's distribution list, please contact the Wilmot Community Resource Help Line at (585) 276-4708 or WilmotCommunityResHelp@urmc.rochester.edu.
Local Resources/Support Groups through Outside Organizations for Individuals Affected by Cancer:
Breast Cancer Coalition of Rochester: The Breast Cancer Coalition of Rochester’s mission is to cultivate community among those touched by breast or gynecologic cancer; to empower informed decision-making through education, support, and advocacy; and to advance research in our region with the goal of eradicating breast cancer. The Breast Cancer Coalition offers programs and services at no charge. Their programming is offered in a hybrid format (some virtual/some in-person). They provide support/networking groups for individuals with a personal diagnosis of breast/gynecological cancers as well as for their caregivers, families, and friends. Check out https://bccr.org/ to learn more.
Cancer Support Community at Gilda’s Club Rochester: Cancer Support Community at Gilda’s Club Rochester’s mission is to ensure that all people impacted by cancer are empowered by knowledge, strengthened by action and sustained by community. They offer over 1,000 free programs each year to those whose lives have been impacted by cancer. Their programs aim to restore, support, and teach, from health and wellness, to healing arts, social, educational, and youth classes. They also offer support groups that one can attend virtually or in person. In addition to a general cancer support group, they offer support groups specific for men with prostate cancer, individuals with multiple myeloma, veterans faced with cancer, for caregivers of individuals with cancer, for youth and teenagers impacted by cancer, for cancer survivors, and for women of color that have been impacted by cancer. Check out https://cscrochester.org to learn more.
Camp Good Days: Camp Good Days strives to improve the quality of life for families affected by cancer or sickle cell anemia through residential camping programs and year-round recreational and support activities in the Rochester, Buffalo and Syracuse, New York areas. Camp Good Days provides services for children with cancer, children who have a parent or sibling with cancer and/or children who have lost a parent or sibling to cancer. They also offer programs for women and men who have or have had cancer. All of the programs and services are offered free of charge. For more information, visit https://www.campgooddays.org/.
US Too: The mission of US Too is to help men and their families make informed decisions about prostate cancer detection and treatment through support, education and advocacy. Us TOO Rochester NY is the regional chapter of ZERO CANCER ~ an independent 501c3 nonprofit organization. US Too provides monthly support group meetings for which all individuals, including survivors as well as caregivers, are welcome to attend. All meetings are free. For more information, go to https://www.sites.google.com/site/ustoorochesterny
National Support Programs & Resources for Individuals Impacted by Cancer:
CancerHope Network: The mission of CancerHope Network is to instill hope in cancer patients and their loved ones through 1:1 peer support from survivors and caregivers who have faced a similar experience. Cancer Hope Network provides free 1:1 individualized peer support to adult cancer patients as well as to their loved ones. They have nearly 500 volunteers that provide support from diagnosis, through treatment and beyond.
(CCARE Lynch Syndrome): The mission for CCARE Lynch Syndrome is to educate the public and healthcare professionals about Lynch Syndrome and to help fund research for a cure for this disease. This is a great resource for anyone looking to learn more about Lynch Syndrome.
Colon Cancer Alliance for Research and Education for Lynch Syndrome some information about new research that is related to Lynch Syndrome. Visit their website at https://fightlynch.org.
Fight Colorectal Cancer: The mission for this organization is to fight to cure colorectal cancer and to serve as champions of hope to all individuals affected by this disease through patient support, impactful policy change, and breakthrough research endeavors. In addition to providing information on their website about all aspects of a colorectal cancer diagnosis, this organization also offers a free hotline for colorectal cancer patients as well as their caregivers. The hotline is available in English and in Spanish, and also offers translation services for over 200 other languages. The hotline does not offer medical advice, but can help with connecting callers to local/national resources including but not limited to support groups and transportation services, and also provides financial counseling and offers short-term counseling/emotional assistance. Check out their website at https://fightcolorectalcancer.org/.
FORCE - Facing Hereditary Cancer Empowered: FORCE is a national organization whose mission is to improve the lives of individuals and families facing hereditary cancer. FORCE is dedicated to improving the lives for anyone with an inherited predisposition to cancer. Support programs available through FORCE include a peer navigation program (where individuals are matched to trained peer navigator volunteers for phone support), virtual support meetings (including general support and community specific meetings led by volunteers), a toll-free hotline (where trained peer volunteers will return calls within 48 hours; available in English and in Spanish), and message boards (where individuals can discuss their situations online 24/7 with other people who have faced similar hereditary cancer concerns). For more information, visit https://www.facingourrisk.org/.
Sharesharet: Sharsheret, a national non-profit organization, improves the lives of Jewish women and families living with or at increased genetic risk for breast or ovarian cancer through personalized support, while also saving lives through educational outreach. While their expertise is in young women and Jewish families as related to breast cancer and ovarian cancer, Sharsheret programs serve all women and men. Sharesharet provides a variety of virtual cancer support programs with interesting topics, expert speakers, and impactful discussions to help individuals feel connected to others in the community. Additionally, Sharesharet offers individuals confidential support and information via a clinical team of trained, skilled mental health professionals and genetic counselors. They also have a peer support network where women diagnosed with or at high risk for breast/ovarian cancer can speak with other women who have shared similar experiences. For more information, visit https://sharsheret.org/.
Online Resources
- National Cancer Institute Genetics Testing Fact Sheet: The NCI website has basic information about genetic testing and interpreting as well as links to more detailed information about specific genetic mutations.
- Oncolink: Articles and resources about how your genetic make-up and family history (or lack of) influence your cancer risk.
- Lynch Syndrome International: LSI is founded and governed by Lynch syndrome survivors, their families, and health care professionals who specialize in Lynch syndrome.
- Hereditary Colon Cancer: The Hereditary Colon Cancer Foundation connects patients, caregivers, and medical professionals to educational, social, and financial resources while promoting requisite research and health care initiatives.
- Facing Our Risk of Cancer Empowered (FORCE): Improving the lives of individuals and families affected by hereditary breast, ovarian and related cancers.
- The Basser Center for BRCA: Center for news, research, treatment and prevention of BRCA-related cancers.
- American Institute for Cancer Research: For recommendations regarding cancer risk reduction based on the most current research.
Printable Resources