Some facts and updates from studies

March 2010 European Breast Cancer Organization - two studies report finding, seefull article below:

Excerpt: "As yet we have found no benefits with respect to disease-free and overall survival."

January 2009

Early Mammograms May Have Net Harm in Some BRCA Mutation Carriers (Brief Communication, JNCI January 27, 2009, Advance Access titled: "Estimated Risk of Radiation-Induced Breast Cancer From Mammographic Screening for Young BRCA Mutation Carriers"

The risk of radiation-induced breast cancer may outweigh the benefits of mammography in women under the age of 30 who carry a mutation in BRCA1 or BRCA2, according to a mathematical modeling study.

The general recommendation for women who carry a mutation in BRCA1/2 is to start getting annual mammograms as early as 25 to 30 years of age. However, it is not clear whether the risk of radiation-induced breast cancer would limit the benefit of early mammography.

To estimate the impact of early mammograms on overall breast cancer risk, Amy Berrington de Gonzalez, D.Phil., of the Johns Hopkins Bloomberg School of Public Health in Baltimore, and colleagues modeled excess breast cancer mortality following five annual mammograms starting at various ages.

The model indicated that women who underwent five mammograms between the ages of 24 and 29 would have an additional 26 breast cancers per 10,000 women due to the radiation. Between the ages of 30 and 34 they would have an excess of 20 additional cancers, and between 35 and 39 an additional 13 cancers. To outweigh these risks, mammography screening would have to reduce breast cancer mortality by 51 percent for women between the ages of 24 and 29, by 12 percent for those between 30 and 34, and by 4 percent for those between 30 and 34. The investigators conclude that if their assumptions are correct and mammograms reduce breast cancer mortality by 15-25 percent, which is consistent with empirical data, then there there would be no benefit for mammograms in women under the age of 30 and a marginal benefit for women between the ages of 30 and 34.

"In the absence of direct empiric data, our estimates can be used by those involved in the decision-making process for BRCA mutation carriers to assess whether the benefits from early mammographic screening are likely to outweigh the radiation risks," the authors conclude. Amy Berrington de Gonzalez, first author.

12/07 Tumor suppressor gene BRCA1 mutations may be twice as common among young African-American breast cancer patients as among those with high-risk Jewish ancestry overall (17.6% versus 8.2%).

The same was true in comparison with young white patients (7.2%), although prevalence was lower among black than white patients overall (1.3% versus 2.2%), according to an analysis of the population-based Breast Cancer Family Registry in the Dec. 26 issue of the Journal of the American Medical Association. Thanks to

July 2006 Consumer alert, At-Home Genetic Tests: A Healthy Dose of Skepticism May Be the Best Prescription.

The consumer alert emphasizes that "genetic tests should be performed in a specialized laboratory, and the results should be interpreted by a doctor or trained counselor who understands the value of genetic testing for a particular situation."

It also states that "in most cases, genetic testing makes the most sense when it is part of a physical exam that includes a patient's family background and medical history." Additionally, it cautions consumers to "be wary of claims about the benefits these products supposedly offer."

In February 2006, the Secretary's Advisory Committee on Genetics, Health, and Society (SACGHS) recommended that FTC and FDA issue a joint statement about genetic tests marketed directly to consumers to help raise public awareness about the issues associated with genetic testing and the importance of careful assessment of such advertisements.

Copies of the consumer alert, FTC press release, and SACGHS letter can be found at the following websites: FTC consumer alert: At-Home Genetic Tests: A Healthy Dose of Skepticism May Be the Best Prescription

A study by Jennifer S. Lee of the Howard Hughes Medical Institute in Bethesda, MD and a multi-center team studied a group of Ashkenazi Jewish women. Up to 2% of women with this ethnicity can carry BRCA 1 or BRCA 2. This study looked at survival.

The information about women with these defective genes has changed over time since its discovery. This study looked at survival for relatives who had been diagnosed in previous years. These family members had either breast or ovarian cancer.

The study tested 5300 women for threse specific mutations and then interivewed them. Of the 50 women who carried the mutations, 58 of their first degree relatives-meaning mother or sisters, had been diagnosed with breast cancer. An additional 10 women had ovarian cancer.

Median survival for those with breast cancer was 16 yeras among the relatives of the carriers of the genes and 18 years among the relatives of the noncarriers. This is not statistically significant in difference. Survival with ovarian cancer did not appear to be affected by BRCA 2.

This study was published in the February 3, 1999 issue of the Journal of the National Cancer Institute.

UPDATE: 12/03 A new hotline

The helpline--1-866-824-RISK (7475)--is a joint project of the Abramson Cancer Center of the University of Pennsylvania and FORCE, an organization that raises awareness about hereditary cancer risks and provides support to high-risk women.

All of the volunteers are women with a family history of hereditary breast and ovarian cancer.

The volunteers who answer the helpline are not medical experts and will not offer medical advice. Instead, volunteers will refer callers to sources of medical information. They can also provide information on resources, such as genetic testing.

Family connections

Mother and Father's family history needed

Importance of Paternal Family History
Cancer Risk For Males w/BRCA1/2
Breast-feeding & Risk Reduction BRCA1/BRCA2

JNCI, 7/04

Breast Imaging Study for Those w/Genetic Risk

Washington, DC, VA, MD areas posted 2/29/04

Increased Sensitivity in Testing

A new laboratory method improves accuracy 2/00

Earlier Screening Beneficial
MRI of Value
Hereditary Ovarian Cancer & Survival

Longer survival for women with inherited genetic mutations JAMA 2000;283:2260-2265

Improved Survival with BRCA mutations
Prophylactic Bilateral Salpingo-Oophorectomy
Prophylactic Surgery to Reduce Risk of GYN Lynch Syndrome

NEJM, 1/06

Ovary Removal Value Varies with Gene Mutations
CaPrvntin Surgery Differs Between BRCA1& BRCA2 Mutations
Study:  Lumpectomies Work Well

No differences because of hereditary disease

Risk of Contralateral Bca

Study from the British Journal of Cancer 7/00

Bca Risk in Women with Primary Ovarian Ca
Ovarian Cancer Risk for Breast Cancer 'Survivors'
Exercise May Delay Onset of Cancer

Study, 10/00 indicates differences pre-1940 and post 1940 (ENVIRONMENTAL????)

Family History & Preventive Health Behaviors:BCa
Oral Contraceptives &  Bca/Ovca

Journal of the American Medical Association 10/00

Oral Contraceptives Do Not Reduce Ovarian Ca Risk
Pill Hormone & Lower Ovarian Risk
Progesterone and cell death
Oral Contraceptibes Not Linked to Breast Cancer
Contraceptive/Repro History & Ova Ca Risk
Excerpts:Intl Conf Adj Breast Therapy

February 2001, Switzerland International Conference

Non Profit Org for Those Affected by Hereditary Br/OVA Ca

Collaboration w/Moffit Ctr, Tampa, FL plus LINK, 7/04

Lifetime Risks Bca:Ashkenazi Jewish Carriers

Cancer Epidemiology, Biomarkers & Prevention, May 2001

Ashkenazi: Risk Increases if Born After 1940
Gilda Radner Familial Ova Ca Registry

Link for those with two family members w/ovarian ca

Prophylactic Bilateral Mastectomy

New England J of Medicine, 7/01

Risk Perception w/Prophylactic Mastmy
Pre-Malignant Lesions in Prophylactically Removed Breasts
New Ideas About Prophylactic Mastectomy
Overestimates of Risk Reductions:Prophylactic Surgery
Reoperations On Implants After Prophylactic Surgery
Prophylactic Surgical Mgment:Breast-Ovarian Ca Syndrome
Psychological Impact of Loss of Breasts
Prophylactic Mastectomy Gain of 3.34-4.65 Years
Bilat Prophylact Mastectomy: Complications/Procedures
New studies on surgical options in inherited breast cancer show that drastic treatment is not always best [European Cancer Organization]
Familial Risk Raised by Alcohol (Bca)

Reuters Health, 7/01

Resveratrol Increases BRCA1/2 mRNA Expression
Survival Rates

Intl J Cancer, 2001

Family History DOES NOT Impact Survival
Survival & Familial Bca/Oophorectomy
Tumor Size/Lymph Nodes Different w/ BRCA1
Survival/Recurrence Similar Outcomes to Non Carriers
BCa Prognosis & Family History
Most w/Family History Do Not Get Cancer

Lancet, 2001

Familial Bca-Collaborative Reanalysis
PrecursorPathology with BRCA1/2 Mutations-
Familial Risks, Early-Onset Bca
BCa Risk in BRCA Negative Women
BRCA 1 Does More in Ovarian Ca

JNCI, 1/02

BRCA Mutations & Improved Ova CA Survival

J Clin Oncol, 3/02

Genetic Alliance Organization

LINK to Int'l site for education, support, advocacy for people with genetic issues

New Guidelines: Testing  Hereditary Colorecal Ca/Other Ca Risks

Press Release, NCI, 2/04 JNCI

Nat'l Soc of Genetic Counselors

LINK for publications and locations for services

New Breast Cancer Gene Found-CHEK2

Institute of Cancer Research, UK 4/02

Risk of BCA: w/ Malignant Melanoma

Euro J Cancer Prevent, 6/03

ATM Mutations in Bca/Oca

Cancer Research, 6/03

Race & Attitudes on Genetic Testing

Cancer Epi Biomarkers & Preven, 3/04

Genetic Mutation/BCA and African Americans
Complementary Medicine & Genetic Testing

ASCO, 2004

Czech View of CAM 'Healers' (i.e. Individual's Choices)
Alternative Remedies & Med Students Personalities
Use of CAM in Pts in Clinical Trials: Israel
Qol Outcomes BCa in Integrative Treat Ctr
Six BCa Pts Used Alt Therapy w/o Conventional: No Success
91% of Cancer Pts Surveyed Use Complementary Thrpy
CAM & Perceived Risk of Recurrence: BCa
Acupuncture for Pts at Risk of Chemo Nausea (emesis) BENEFIT
Influence of Tai Chi & Support Thrpy:Fatigue/QoL
Use of CAM during Chemo BCa Pts
Acupuncture for Nausea: How it Works
Facing Our Risk

LINK to group for those with genetic mutations for breast or ovarian ca

New Method to Prevent/Treat Hereditary BCa -Sweden

April, 2005 Nature article

Non-BRCA Hereditary Breast Ca & New Cancers

Cancer, 3/06

Chest X-rays & Risk of BCa: BRCA1/2 Mutations Carriers

J Clin Oncol, 6/06

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