Cancer Genetic Counseling
Resources
Cancer
http://www.facingourrisk.org/
FORCE (Facing our Risk of Cancer Empowered) is a nonprofit support organization for women whose family history and genetic status put them at high risk for ovarian and/or breast cancer. This web site allows individuals and families facing the unique issues and concerns associated with BRCA1/2 mutations to discuss their feelings with others in similar situations. Information discussed on this web site should not be interpreted as medical advice. Please read the disclaimer carefully. FORCE also has a toll-free, confidential, national helpline (1-866-824-RISK (7475)) Volunteers staff the line from noon-2pm (EST) on Mondays, and 10am-noon and 7-9pm (EST) Tuesday -Friday but callers may also leave a message to receive a call back. Volunteers will match callers to a peer counselor with similar experiences and/or provide referrals to additional resources but they will not offer medical advice.http://www.intelihealth.com/IH/ihtIH/WSIHW000/32193/32193.html
Aetna sponsors this website but its information content is provided by Harvard Medical School. It includes basic information on genetics, the human genome project, and genetic testing. The ‘Decision Guide: Breast and Ovarian Cancer’ section includes information about breast and ovarian cancer, BRCA1 and BRCA2, the genetic counseling and testing process, possible test results, and the available screening and prevention options.
http://www.cancer.gov/cancertopics/breast-cancer-surgery-choices/allpages
This booklet produced by the National Cancer Institute outlines the available surgical choices for women with early-stage breast cancer. It provides a thorough but simple overview of surgical options including a side-by-side comparison in table form. It also outlines steps to follow and things to think about in making a surgical decision. However, please keep in mind that this brochure is written for the average woman with early-stage breast cancer and does not address some important factors (including family history and BRCA mutation status) that should be considered when making a surgical decision.http://www.honorthejourney.com
Susan Wood Reider, artist and breast cancer survivor, showcases her series of mixed-media collage artwork entitled “Strange Gifts: Honoring the Journey” on this website. She describes her art as “one artist’s response to the reality of cancer’s wake up call” and a “thank you to life through art”. The pieces are rich, beautiful, colorful images and a selection is available as a gift-boxed set of blank cards. The cards are $20 for a set of 8 and a minimum of 25 % of the proceeds is donated to organizations benefiting cancer survivors.http://www.hmc.psu.edu/womens/showme/index.htm
http://www.susanlovemd.org/breastcancer/content.asp?L2=7&L3=5&SID=235
These websites have sample stories and photographs from the book, “Show Me: A Photo Collection of Breast Cancer Survivors’ Lumpectomies, Mastectomies, Breast Reconstructions, and Thoughts on Body Image- Second Edition” published by the Penn State Milton S. Hershey Medical Center in 2001. As the title suggests, this book and the accompanying websites feature breast cancer survivors’ experiences with surgical treatment and reconstruction. They include color photographs of the results of various surgical and reconstruction options and comments from patients and their partners about their experiences. The book is available from the Penn State Milton S. Hershey Medical Center website (http://www.hmc.psu.edu/womens/showme/index.htm) for $25 (plus shipping and handling).http://www.sharsheret.org
This is the website of a national non-profit organization which provides one-on-one telephone support for young Jewish women with breast cancer or at high risk of developing breast cancer. Sharsheret (which is Hebrew for “chain”) links women in their twenties and thirties who have recently been diagnosed with breast cancer to survivors who have volunteered to share their experiences. Callers are matched to volunteers based on their specific concerns and experiences. This website also has a list of links to other relevant organizations, support services, and research articles.http://www.youngsurvival.org/
The Young Survival Coalition is a resource dedicated to the special needs of women diagnosed with breast cancer at a young age. This website offers women an opportunity to volunteer for activities aimed at increasing funding for breast cancer research, technology, education, and outreach. It provides an exciting forum for discussion between women diagnosed with breast cancer at an early age..http://www.abanet.org/women/breastcancer.html
This website discusses the “Breast Cancer Legal Advocacy Initiative” established by a branch of the American Bar Association known as the Commission on Women in the Profession. Accordingly, this site outlines patient rights, summarizes breast cancer legislation by state, and provides contact information for groups offering a variety of educational materials, counseling, and legal assistance to those affected by breast cancer. This is an exciting resource for those interested in learning more about their legal rights as a patient with breast cancer.http://envirocancer.cornell.edu/FactSheet/FactSheet.cfm
This website is run by the Cornell University Program on Breast Cancer and Environmental Risk Factors in New York State. It provides numerous fact sheets on a variety of topics relating to breast cancer in general as well as environmental factors (pesticides, diet, and lifestyle). Sample topics include breast cancer in men, estrogen and breast cancer risk, hormones in food and breast cancer risk, and exercise and breast cancer risk.http://www.fda.gov/cder/news/tamoxifen/
This website provides information about the use of the medication tamoxifen for breast cancer risk reduction.http://www.breastcancer.org
This comprehensive site provides information on a wide range of topics related to breast cancer including risks, diagnosis, treatment, reconstruction, menopause, support and research. This site is committed to informing and empowering women with breast cancer and has easy to read text and numerous helpful pictures.www.myselftogetheragain.org/process.htm
The Myself: Together Again project was started as a resource for young women diagnosed with breast cancer who have chosen to have breast reconstruction after mastectomy. This website includes black and white photographs taken by a professional photographer which documents one woman’s decision to have breast reconstruction using implants and provides a photo-narrative of the reconstruction process.www.breastcenter.com
This is a website for the Center for Restorative Breast Surgery in New Orleans, Louisiana. This site features a photo album of actual patients who have agreed to allow their ‘before’ and ‘after’ photographs to be used as a resource for other women contemplating breast reconstruction. Various methods of breast reconstruction are featured on this site. These images are graphic and may not be suitable for everyone.*Please also see BRCA1/BRCA2 Resources above
http://www.CCAlliance.org/
The Colon Cancer Alliance provides a venue for the voices of colon cancer survivors to be heard. This site provides the latest updates in colon cancer research, the option for those dealing with colon cancer to talk with someone who has had a similar experience, as well as links to the best colon cancer sites on the internet. This site is an amazing resource for colon cancer survivors.http://www.hopkins-gi.org/
This website is run by Johns Hopkins Medical Institutions and it provides a great overview of hereditary colon cancer including information about colon cancer, different hereditary forms of colon cancer, and the diagnosis and treatment of colon cancer. This information is located under the heading “Digestive Disease Library”.
http://www.breastcancercare.org.uk/content.php?page_id=509
This well-written guide discusses ways to talk your children about a breast cancer diagnosis. This site includes information about when and how to tell your children about your diagnosis and provides suggestions for speaking to children under the age of 5 as well as older children.The American Cancer Society (ACS) website includes information about speaking to a child about a cancer diagnosis. This specific link provides information to help children cope with a cancer diagnosis in a close relative and includes tips from actual cancer survivors. Additional reading material is also available on this topic through local ACS chapters.
http://www.cancer.gov/cancertopics/when-someone-in-your-family
Specifically geared to adolescents, this site produced by the National Cancer Institute (NCI) provides information about cancer in easy to understand terms. This site also discusses how a cancer diagnosis in a sibling or parent may change day-to-day life and provides information about feelings that a child may experience after a family member is diagnosed with cancer.http://www.survivorshipguidelines.org
This site will lead you to The Children’s Oncology Group “Long-Term Follow-Up Guidelines for Survivors of Childhood, Adolescent, and Young Adult Cancers”. These detailed guidelines were developed as recommendations for screening and management of the late effects that may arise as a result of treatment for cancers diagnosed in childhood or early adulthood. These guidelines are targeted to healthcare professionals and it is recommended that you review the information in conjunction with a doctor familiar with long-term follow-up for childhood cancer survivors.http://www.cancer.gov/cancertopics/thinking-about-CAM
This website entitled “Thinking about Complementary and Alternative Medicine” is sponsored by the National Cancer Institute and focuses on cancer-related medicines and treatments. The site provides definitions and an overview of several treatments, including Tai Chi, Reiki and Reflexology. You can order a free copy by calling 1-800-4-CANCER (1-800-442-6237). The more general site is http://www.nccam.nih.gov. If you are looking for more specific, evidence-based information, try http://www.naturalstandard.com/.http://www.kidskonnected.org
Kids Konnected is a non-profit organization whose mission is to provide education and support for children who have a parent with cancer or have lost a parent to cancer. The group offers online support from other children, resources for different age groups by mail, and in-person meetings throughout the country. Check out kidskonnected.org to learn more about resources near you.http://www.nccn.org/patients/patient_gls/_english/_distress/contents.asp
Individuals often experience increased levels of distress with their own or a family member’s diagnosis of cancer. For this reason, The National Comprehensive Cancer Network and the American Cancer Society have developed this guideline to help provide patients with information to recognize, measure, and treat varying levels of distress. This report aims to explain the range of distress and to offer advice for handling feelings and receiving treatment if necessary.http://www.thelifeinstitute.org
Click on this website to download a free copy of, 'Conversations from the Heart: Resources for Talking with Children about a Parent's Serious Illness' (or e-mail jperloff@umail.albany.edu for a free bound copy). This comprehensive booklet provides brief reviews of books and videotapes for children whose parents have serious illnesses, including cancer. Some resources are aimed at children, others for parents and professionals. There is a helpful index of books sorted by parents' illness and the age of children targeted.http://www.smokefree.gov
Quitting smoking is one way of significantly reducing one’s risks for a number of cancers and diseases. This website was created by the National Cancer Institute (NCI) to provide resources to help individuals quit smoking including an interactive online guide to quitting, information about national and local telephone support lines (national 1-877-44U-QUIT; CT 1-866-END-HABIT), access to instant messaging support, and additional publications and brochures about quitting.http://www.mautnerproject.org
This organization based in Washington D.C. sponsors various programs for lesbians with cancer, their partners, and families. Although many of the programs are held in the D.C. area, some services are available nationally including a Peer Support Network that provides one-on-one phone support for lesbians with cancer. The Mautner Project can also be reached via phone at 202-332-5536 or 1-866-MAUTNER.http://www.plwc.org
This new website called “People Living With Cancer” is produced by the American Society of Clinical Oncology (ASCO). It presents detailed medical information conveyed in clear, concise language and reviewed by ASCO members. There are many different resources including information about specific types of cancer, listings of upcoming events, information about clinical trials, a medical dictionary, and a database with information about various medications. There are also discussion groups on specific types of cancer and more general topics (i.e. emotional issues, practical issues, spirituality, and family and friends).http://www.cancer.gov/clinical_trials/understanding/
This website hosted by the NCI contains the text of the brochure entitled “Taking Part in Clinical Trials: Cancer Prevention Studies. What Patients Need to Know. A detailed description of what every patient should know about clinical trials before participating.” A copy of this booklet can also be ordered by calling the National Cancer Institute (NCI) at 1-800-4- CANCER.http://www.cancersource.com
This website features the latest comprehensive cancer information for patients and providers, including breaking news updates, chats with oncology experts, and the latest information in the field of cancer.http://www.canceradvocacy.org
This is the website of the National Coalition for Cancer Survivorship, a national advocacy group formed in 1986. It provides links to online cancer resources on a variety of different topics including support groups, pain management, information about specific types of cancer, and clinical trials. They also offer an audio program that is designed to help individuals who have been recently diagnosed with cancer deal with their diagnosis and treatment decisions.http://www.cancercare.org
This is the website for Cancer Care, a nonprofit organization that provides free professional help for people with cancer. Their website offers many educational and support resources. Support groups and individual counseling by a network of social workers are available online, by telephone, or onsite (NY, NJ, and CT locations). A wide variety of articles and lists of resources on different types of cancer, and issues in cancer management are also available. Sample topics include bereavement and grief, sexuality and breast cancer, caregiver resources, pain management, and finding financial assistance.http://www.cancer.org/
This is the website for the American Cancer Society (ACS). It provides a wealth of information about cancer and about upcoming events sponsored by the ACS.http://www.cancer.gov
This is the main menu page of the National Cancer Institute webpage. It allows you to access a broad range of information including cancer treatment, research and clinical trials, support services, and publications.http://www.fertilehope.org
This website provides information about the effects of cancer treatments on fertility and the various options for preserving fertility. It provides information for men, women, and adolescents including a list of questions that patients can ask their doctors when discussing cancer treatment and fertility. This nonprofit organization also provides a network for patients to speak to other individuals who are dealing with the same questions and concerns.http://www.cancerquest.org
This website produced by the Emory University Department of Biology provides a thorough overview of cancer biology including normal cell biology and changes in the cell that lead to cancer. Detailed information about cancer diagnosis and treatment, new areas of research, and clinical trials is also included. Although all technical terms are defined in a glossary and excellent illustrations accompany the text, some readers may find the text difficult to understand due to the level of detail and the use of technical terms.http://www.cdc.gov/DES
Diethylstilbestrol (DES) is a medication that was prescribed to pregnant women from 1938-1971, primarily to prevent miscarriages. This website from the Centers for Disease Control and Prevention (CDC) provides current information representing over 30 years of research on the health risks associated with DES exposure. It has separate sections for women who took DES during pregnancy and for men and women who were exposed to DES before birth (in the womb).
http://www.ovariancancer.org/
This is the website of the Ovarian Cancer National Alliance and it provides information and support for patients with ovarian cancer and their families.
*Please also see BRCA1/BRCA2 Resources above
http://www.hhs.gov/familyhistory
In November 2004, several offices and agencies within the U.S. Department of Health and Human Services launched a new national program called “The U. S. Surgeon General’s Family History Initiative”. The purpose of this initiative is to raise awareness about the importance of obtaining, recording, and maintaining an accurate family health history. This website provides information and a tool called “My Family Health Portrait” to help individuals organize, create, and print their family health history. This tool is available as web-based or downloadable software in English and Spanish.http://www.nsgc.org/consumer/familytree/index.cfm
This page provided by the National Society of Genetic Counselors gives tips for collecting and recording your family history. If you are interested in obtaining more information about researching your family history, please see “Researching your family history” on our website (www.yalecancercenter.org/genetics/resources/index.html) as well.
http://www.CyndisList.com
This site is an indexed directory of over 100,000 genealogy sites in over 150 categories. Some categories of interest include a beginner’s section, supplies (including forms), “how to”, census related sites, search engines, and software and computers.http://www.USgenweb.org
This site is run by a volunteer organization whose mission is to make census records and other genealogical resources available on the Internet. It includes a section called “help for researchers” which has helpful advice and links to other sites for beginners. It also contains searchable databases of transcribed public domain records including census records, wills, and public documents.http://genealogy.about.com
If you can get beyond the distracting advertisements, this site offers a variety of helpful "how to" articles and an indexed directory to numerous genealogy sites including a “beginner's corner” section. One particularly useful article gives hints for using general search engines for genealogical research. This article can be found at genealogy.about.com/library/weekly/aa041700d.htmhttp://www.familysearch.org
This site, run by the Church of Jesus Christ of Latter-Day Saints, allows you to search many of the records in their vast database including vital records, census records, and the social security death index. You can also order additional genealogy research materials that are not currently available in their online database.
http://www.ancestry.com
Downloadable forms are available for free through the “family trees” tab on this site (in the “charts and forms” box). The site also has databases and message boards but some services require a subscription fee for access.
Genealogy-Specific Search Engines
http://familytreemaker.genealogy.com/all-search.html
This site includes a search engine called the “internet family finder” which allows you to search an index of websites, family archives, and online data for your family surnames.http://www.genealogytoolbox.com
This site includes a search engine that lets you search genealogy specific websites and it also has an indexed directory that includes alphabetical listings of sites related to specific surnames.
http://www.cdc.gov/nchs/howto/w2w/w2welcom.htm
This site provides instructions, addresses, phone numbers, and prices for obtaining copies of vital records from each state and territory.http://www.health.state.pa.us/hpa/obd.htm
This site, run by the Pennsylvania Department of Public Health, contains websites and addresses for obtaining vital records from each state.
General Genetics and Cancer Genetics
http://www.fhcrc.org/phs/cgn/under.htm
This website is hosted by the Northwest Cancer Genetics Network and it provides links to other cancer genetics resources.http://www.sickkids.ca/childphysiology/cpwp/Genetics/geneticsintro.htm
Medical illustrators at The Hospital for Sick Children in Toronto, Canada developed this illustrative website that covers the basics of genetics, as well as the brain, heart, lungs & airway and skeleton. This site is a must-see for children and adults who want a well organized, innovative and beautifully designed guide to genetics and these organ systems. Genes, chromosomes and inheritance are completed and the genetics & health section is being developed. What a great resource for any student working on a school project or any adult who wants to understand the ins and outs of genetics!http://www.dnalc.org/home.html
Fascinating animated multimedia exhibits captivate viewers as they are guided through segments on the basics of heredity, genetic disorders, eugenics, DNA sequencing, and cancer and plant genetics. Hosted by the Dolan DNA Learning Center at Cold Spring Harbor Laboratory, this site is dedicated to informing students, teachers, and families about the concepts of genetics. The Learning Center also offers public workshops, exhibitions, presentations, field trips, summer day camps, and teacher training.http://www.genetics.com.au/factsheet/index.html
This site for the Australian Centre for Genetics Education contains numerous fact sheets on a variety of topics in general human genetics, genetic technology, and clinical genetics. Available topics include genes and chromosomes, genetic counseling, genes and cancer, hereditary breast and ovarian cancer, hereditary colon cancer, forensics, gene therapy, and cloning. The fact sheets are very detailed but easy to understand due to the use of simple language and plenty of pictures.http://gslc.genetics.utah.edu/
The Genetic Science Learning Center is an excellent resource that provides innovative and effective genetic science learning programs for teachers, students, and the public. This site should not be missed by anyone with an interest in better understanding the field of genetics.http://www.genome.gov/glossary.cfm
This is a glossary of genetic terminology, which is run by the National Human Genome Research Institute.http://www.geneticalliance.org/
This is the website of the Genetic Alliance, which is a coalition of genetic support groups. It has information about different genetic diseases, issues related to genetic diseases (i.e. ethics, discrimination, etc.), and a searchable database of genetic support groups.http://www.genetics.gsk.com/kids/index_kids.htm
This website provides a fun, interactive introduction to basic genetics for children. It includes simple text descriptions, interactive pictures, video clips, and games. Some of the text and videos are more complex and may be more appropriate for older children and adults. Topics covered include DNA, genes, heredity, and the role of genetics in diseases.http://www.intelihealth.com/IH/ihtIH/WSIHW000/32193/32193.html
Aetna sponsors this website but its information content is provided by Harvard Medical School. It includes basic information on genetics, the human genome project, and genetic testing. The 'Decision Guide: Breast and Ovarian Cancer' section includes information about breast and ovarian cancer, BRCA1 and BRCA2, the genetic counseling and testing process, possible test results, and the available screening and prevention options.http://www.kumc.edu/gec/
This is the Genetics Education Center website of the University of Kansas Medical Center and it is an amazing resource for educators and individuals interested in learning more about genetics. It provides access to hundreds of resources including books, videos, lesson plans, activities, and glossaries on a variety of subjects related to basic genetics, genetic diseases, and the Human Genome Project.http://ghr.nlm.nih.gov
The “Guide to Understanding Genetic Conditions” is produced by the U.S. National Library of Medicine. It currently contains information about over 200 genetic conditions with plans to continually expand the list of conditions. It also includes a glossary of genetic terms, an introduction to basic genetics, and resources for more information on a variety of topics for patients and families, educators, and individuals interested in genetics.http://www.eurekascience.com/ICanDoThat/
A fun, simple introduction to genetics for children (and adults) using drawings and characters, this website introduces the basics of cell structures and DNA as well as explaining new technologies (i.e. cloning and genetic engineering). There are also many links to other sites for science-related information.
Genetic Counselors, where to find one in your area
http://www.nsgc.org/resourcelink.cfm
This directory is presented by the National Society of Genetic Counselors and it allows you to search for a genetic counselor by location, area of specialization, institution and name.http://www.cancer.gov/search/genetics_services
This is a directory presented by the National Cancer Institute and it is specifically for finding cancer genetic counseling services.
Insurance Legislation/Genetic Discrimination
http://www.nsgc.org/consumer/genetic_discrimination_resource.cfm
The National Society of Genetic Counselors, Inc. (NSGC) and Facing Our Risk of Cancer Empowered (FORCE) created this brochure entitled “Genetic Information, Privacy, & Discrimination…What you need to know” in order to address some misconceptions about genetic discrimination. This brochure provides answers to common questions including “Is genetic discrimination a problem?” and “Who is at risk?” and also offers resources for additional information, support, and advocacy. It is available on both the NSGC website listed above and the FORCE website (http://www.facingourrisk.org).http://www.genelaw.info
This is a very thorough and well-researched source of information about legal issues in human genetics presented by “The Genetics and The Law Project” from the Council for Responsible Genetics. It includes summary reports, a database of court cases and legislation, and summaries of all state legislation and pending federal bills. The information is divided into categories that include health insurance, privacy and confidentiality, employment, and medical malpractice.http://www.genome.gov/PolicyEthics
This website provides a good overview of the current federal legislation as well as the various bills that have been proposed and recommendations that have been made for future legislation. It also has a policy and legislation database that is searchable by content type (i.e. type of law), topic of interest, and source (i.e. state or country).http://www.nationalpartnership.org
This website is run by the National Partnership for Women and Families. It has a lot of background information on genetic discrimination and good reviews of the current federal legislation. It also includes a report called “Faces of Discrimination: How Genetic Discrimination Affects Real People” prepared by the Coalition for Genetic Fairness to encourage the House of Representatives to pass the Genetics Nondiscrimination Act. This report highlights individuals' experiences with genetic discrimination or fear of genetic discrimination. However, this website tends to cite some compelling but anecdotal reports that have not been supported by the available data so please keep this in mind. This website also provides information about how you can get involved and influence future legislation by making your opinions about genetic discrimination heard.
Sexual Functioning after Cancer or Surgery
www.aasect.org
This website of the American Association of Sex Counselors, Educators, and Therapists offers a ‘Locate a Professional’ link to find a sex educator, counselor, or therapist in your area.www.cancer.gov/cancertopics/pdq/supportivecare/sexuality/patient
This section of the National Cancer Institute (NCI) website focuses on sexuality and reproductive issues. It provides a good overview of the sexual side effects from cancer treatment and offers suggestions for addressing these side effects.http://www.cancer.org/docroot/MIT/MIT_7_1x_SexualityforWomenandTheirPartners.asp This portion of the American Cancer Society website focuses on “Sexuality for Women and their Partners”. It provides a very complete and easy-to-read overview of the answers to common questions about sexuality, the effects of cancer treatment on sexual functioning, and ways of dealing with changes in sexual functioning after cancer treatment. It also includes a special section for single woman with cancer.
http://www.livestrong.org
This Lance Armstrong Foundation website has separate pages for men and women that provide detailed outlines of the physical changes that can occur after cancer, the cancer treatments that may be responsible, the changes in sexual functioning that may result, and suggestions for coping with these changes.
Yale Cancer Genetic Counseling Blog