Patients who are diagnosed with cancer or face a high risk of cancer due to a genetic predisposition have many questions that need to be answered. This webpage lists a number of resources that one may find helpful to learn more about a diagnosis or predisposition to cancer. Links have been separated by type of cancer:
General and Hereditary Cancer Websites
Barbara Ann Karmanos Cancer Institute
This website provides a great deal of information on the different cancers, treatment options, side effects, and clinical trials.
Chemocare is a website designed to provide information about chemotherapy to patients and their families, caregivers and friends. On this user friendly website, one can easily find information about various chemotherapy drugs, how they work, managing side effects, and precautions for patients.
Fertile Hope is a nonprofit organization dedicated to helping cancer patients who are facing fertility difficulties. This website provides information on parenthood options for recently diagnosed or post-treatment cancer patients. Patients can also find recent news, locate a physician, and talk to other patients via message boards.
Pregnant with Cancer: Your Support Network for Hope
Their mission is to support women who are diagnosed with cancer during their pregnancy and connect them with other women who have gone through similar experiences. On the website there are survivor stories, related articles and a newsletter.
The National Cancer Institute
The National Cancer Institute (NCI) is a component of the national Institutes of Health (NIH), one of eight agencies that compose the Public Health Service (PHS) in the Department of Health and Human services (DHHS). the NCI, established under the National Cancer Institute Act of 1937, is the Federal Government's principal agency for cancer research and training.
National Gene Test Fund
This is a non-profit organization, which also includes blogs and news articles, as well as links to other resources. Their mission is to provide a resource to encourage discussion, action and funding of genetic testing for those people who are at high risk for genetically transmitted diseases and are willing to take preventative measures, but cannot afford the prohibitive costs of such testing.
American Institute of Cancer Research
This website includes a variety of helpful information and new research about cancer. This site particularly includes research about how diet and exercise and other lifestyle factors can affect cancer risk. There are links to quizzes, tips, and healthy recipes under the "Reduce your Cancer Risk" tab.
Cancer Health Information Center: Penn State Milton S. Hershey Medical Center
Our Cancer Center website provides in-depth information on the prevention, diagnosis, treatment, and care of cancer patients.
Lance Armstrong Foundation: Cancer Support Topics
This webpage offers practical information on what to expect from the cancer experience. It includes detailed information and practical steps you can take to cope with the effects of cancer.
Association of Cancer Online Resources
ACOR is a collection of online cancer resources aimed at providing patients and families with accurate information in a supportive online environment.
Stand Up To Cancer
The mission of this organization is to accelerate groundbreaking cancer research that will get new therapies to patients quickly and save lives. SU2C's goal is to bring together the best and brightest in the cancer community, encouraging collaboration instead of competition. By galvanizing the entertainment industry, SU2C creates awareness and builds broad public support for this effort.
Genetic Alliance promotes the advocacy, education, and empowerment of all individuals whose lives have been affected by cancer.
Access DNA provides people with access to professionally written and reviewed information about genetics, as well as access to genetic counseling services in their area. The website features a community forum, news forum, and expert forum for genetic related questions.
Yale Cancer Center
This is a straightforward website with information about when you should consider genetic counseling, factsheets about topics in cancer genetic counseling, tips for researching your family history, and more. Yale Cancer Genetic Counseling also has a blog-style website (www.yalecancergeneticcounseling.blogspot.com/) which contains information about news in genetics research and genetic counseling, and provides links to upcoming conferences and educational events.
Fertile Action is working to ensure every woman touched by cancer actualizes her dream of motherhood. They negotiate fertility discounts for women with a cancer diagnosis or a known BRCA mutation.
Cleaning for a Reason
This is a non-profit organization that partners with professional residential maid service companies who agree to provide four free cleaning services to two women in their area at a time. It requires an online application process and a doctor's verification of treatment.
Other Hereditary Cancer Syndromes
The VHL Family Alliance
The VHL Family Alliance provides information for families and physicians about this disorder, and local self-help support groups for families affected with VHL. International VHL Support Organizations are established on five continents, and services include online discussion groups in seven languages. Another web destination for this organization is here.
Association for Multiple Endocrine Neoplasia Disorders (AMEND)
This is an international patient group supporting and informing anyone affected by or interested in multiple endocrine neoplasia disorders and their associated sporadic endocrine growths. Their website provides medical information, discussion boards, links to upcoming events, and many other resources.
This website aims to provide up-to-date information about neuroendocrine diseases so they can make informed decisions for the treatment of pheochromocytoma and paraganglioma. In the future, the site will also serve as a virtual support group for patients and their families.
This website offers a comprehensive collection of information for patients, families, and medical professionals about Peutz-Jeghers syndrome. It offers easy to understand explanations for children and adults alike, as well as ways to talk to children about Peutz-Jeghers syndrome, genetic information, and research updates.
Birt Hogg Dube Syndrome Family Alliance
The Birt-Hogg-Dube syndrome website features a section for families affected by the condition and a section for researchers. Along with easy to understand descriptions of signs and symptoms of BHDS, diagnosis, treatment, and testing, the organization offers and annual symposium open to interested parties. Some areas of the website require registration; registration is free.
Fanconi Anemia Research Fund, Inc.
The mission of this organization is to find effective treatments and a cure for Fanconi anemia and to provide education and support services to affected families worldwide. Their website includes resources for families and links to new research and fundraising opportunities and events like an annual "Family Meeting" with talks by leading researchers and specialists.
Gorlin Syndrome Group
This is a patient group and support network that offers guidance, advice, and information to families, friends, and caregivers affected by Gorlin Syndrome.
BCCNS Life Support Network
This website aims to provide healthcare, counseling, and support services to children and adults affected by Basal Cell Carcinoma Nevus syndrome. This website focuses on early diagnosis and treatment of BCCNS.
Gastric Cancer Websites
GIST Support International
This website provides education and support for people affected by gastrointestinal stromal tumor.
DeGregorio Family Foundation
This is a non-profit corporation dedicated to research and education of gastric and esophageal cancers. They funded a registry at Memorial Sloan-Kettering of individuals with early onset and familial gastric cancer, and the link is included under the Clinical Studies and Patient Registries tab on this website.
Stanford Cancer Center
This website provides a wealth of helpful medical information about Hereditary Diffuse Gastric Cancer (HDGC), as well as links to articles about medical management and genetic testing for HDGC.
Breast and Ovarian Cancer Websites
FORCE: Facing Our Risk of Cancer Empowered
A nonprofit organization for women whose family history or genetic status puts them at high risk of getting ovarian and/or breast cancer. On the FORCE website, one can find information on hereditary cancers, risk assessment, genetic testing, risk management including chemoprevention and surgical options. Other features available on the FORCE website include message boards and chat rooms, locating specialists, and a toll-free helpline.
National Alliance of Breast Cancer Organizations
A website providing links to resources such as breast cancer pictures, breast cancer stages, metastatic breast cancer, ductal breast cancer, symptoms, treatment, and research.
Genetic Testing for BRCA1 and BRCA 2: It’s Your Choice: NCI publication
This webpage provides extensive information on the BRCA1/2 genetic testing. Anyone who might pursue or is undergoing genetic testing will benefit from reading through these commonly asked questions and answers. This document can facilitate one’s understanding of the BRCA genetic testing, what the results mean and what steps to take with knowledge of the results.
Sharsheret: Linking young Jewish women In their fight against Breast Cancer
Sharsheret is a national organization of cancer survivors dedicated to the unique concerns of young Jewish women facing breast cancer. This organization provides information to patients and many distinct services such as the Link program which connects young Jewish women facing breast cancer to volunteers who are available to share their own breast cancer experiences. Sharsheret hosts education and outreach programs, has a Sharsheret Update newsletter, and message boards available.
Susan G. Komen Breast Cancer Foundation
The Susan G. Komen Breast Cancer Foundation fights against breast cancer through its support of innovative research and community-based outreach programs. This website provides extensive information for patients as far as early detection and screening, diagnosis, treatment, and breast cancer research. Not only does it provide information but it has a helpline available for patients, awareness and education events, inspiration stories, message boards, and a breast cancer newsroom.
Mothers Supporting Daughters with Breast Cancer (MSDBC)
MSDBC is a non-profit organization whose mission is to provide support to mothers whose daughters are diagnosed with breast cancer by matching them with women who have undergone similar experiences.
Men Against Breast Cancer (MABC)
MABC is the first national non-profit organization designed to provide targeted support services to educate and empower men to be effective caregivers when breast cancer strikes a female loved one; as well as, target and mobilize men to be active participants in the fight to eradicate breast cancer as a life threatening disease.
Bright Pink is a national non-profit organization dedicated to providing education and support to young women who are at high risk for breast and ovarian cancer. Their website provides information for high-risk individuals, a support forum, “Ask the Genetic Counselor,” monthly breast self-exam e-reminders, and a program called Pink Pal which matches individuals with a similar stories/ experiences.
Feel Your Boobies
This website provides reminders to individuals to conduct self-breast exams. This organization believes in the importance of monthly breast self-exams and calls on women to know their bodies and be advocates for their own health.
PA Breast Cancer Coalition
The PA Breast Cancer Coalition (PBCC) represents, supports, and serves breast cancer survivors and their families in Pennsylvania through educational programming, legislative advocacy and breast cancer research grants. The PBCC is a statewide non-profit organization that creates the hope of a brighter tomorrow by providing action and information to women with breast cancer today.
HysterSisters: Woman-to-Woman Hysterectomy Support
HysterSisters offers information to women who are considering or have previously had hysterectomies. The website includes hysterectomy options and alternatives, pre/post-op information, as well as insight on hormones, intimacy, fitness, and cancer.
Ovarian Cancer National Alliance
The Ovarian Cancer National Alliance offers information about ovarian cancer and promotes education, advocacy, and awareness. Also, check out the sections on clinical trials and policies.
National Ovarian Cancer Coalition
The National Ovarian Cancer Coalition provides information about ovarian cancer and includes sections for the newly diagnosed, survivors, and caregivers.
Ovarian Cancer Research Fund
The mission of this organization is to fund research to find a method of early detection and ultimately a cure for ovarian cancer. Their website provides a list of fundraising events and links to support resources. The website Kelly Confidential is a fundraiser for the Ovarian Cancer Research Fund, and is sponsored by Kelly Ripa. For every participant in the online survey, $1 will be donated to the Ovarian Cancer Research Fund.
Right Action for Women
This organization was established by actress Christina Applegate to provide aid for individuals who are at increased risk for breast cancer and do not have insurance or the financial flexibility to cover the high costs associated with breast screenings.
Colon and Rectal Cancer Websites
American Society of Colon and Rectal Surgeons
This website provides patients with a variety of educational materials and information brochures about diseases of the colon, rectum and anus. Patients can learn about the more common colorectal diseases and the appropriate treatments, risk assessment for colorectal cancer, the available screening and prevention methods, and locating a colorectal surgeon.
National Colorectal Cancer Research Alliance
The National Colorectal Cancer Research Alliance was founded with the goals of raising awareness of the seriousness of colorectal cancer and increasing the number of people receiving preventative testing for colorectal cancer. This website provides some basic information about warning signs/symptoms, risk factors, and lowering one’s risk, colonoscopy, and other procedures.
American Gastrological Association
The American Gastrological Association website provides patients with some basic information about various gastrointestinal diseases including information on colorectal cancer.
M.D. Anderson Colorectal Cancer Portal
This website provides information regarding colorectal cancer symptoms, screening, treatments, and clinical research. Patients can also access message boards to ask fellow colorectal cancer patients questions or patients can use the Anderson Network to speak to other colorectal cancer patients to share personal experiences.
STOP Colon and Rectal Cancer Foundation
This foundation promotes public awareness and provides patients with information concerning preventative screening methods and risk factors. The website explains common symptoms of colorectal cancer and encourages healthier lifestyles.
Johns Hopkins Colon Cancer Center
The Johns Hopkins colorectal cancer web site is designed to assist patients, families, and caregivers in learning more about colorectal cancer.
Lynch Syndrome International Group
The mission of this organization is to provide support for individuals afflicted with Lynch syndrome, creating public awareness of the syndrome, educating members of the general public and health care professionals and providing support for Lynch syndrome research endeavors. Their website includes information about Lynch Syndrome, as well as news, events, volunteer opportunities, and links to national and state resources.