January 30th, 2017
A recent article titled,"What I wish I'd known before surgery: BRCA carriers' perspectives after bilateral salipingo-oophorectomy," surveyed a group of women who were positive for a BRCA1 or BRCA 2 gene mutation and were undergoing risk reducing surgery to remove their ovaries, fallopian tubes and uterus. The survey asked women about their experience going through surgical menopause and things they wish they would have known before they had is preventative surgery. Below is a list of topics the participants wish they would have known before having the surgery:
1 59% said they would have like to know the impact of this surgery on their sex life,
2. 57% felt it would have helpful to know about the availability of sex counseling
3. 57% said they would have wanted to know more about the risk of coronary heart disease.
To read the article's full abstract please click here: http://link.springer.com/article/10.1007%2Fs10689-010-9384-z
Have you had a risk reducing bilateral salpingo-oophectomy and hysterectomy (TAH/BSO)? Is there something that you wish your doctor would have told you about before the surgery? Please share below to help us better educate providers and doctors about the topics and guidance needed from women undergoing a TAH/BSO.
December 9th, 2016
According to a study recently presented at the 2016 San Antonio Breast Symposium, BRCA1 and BRCA2 genetic status does not predict survival rates in young women with breast cancer. “There is no significant difference in survival between BRCA gene carriers and non-carriers amongst all young breast cancer patients,” reported Diana Eccles, MD, of the University of Southampton, United Kingdom. The study did find a difference in survival rates between women who have a triple negative breast tumor with and without a BRCA 1 or BRCA2 gene mutation. Women who have a triple negative breast tumor and a BRCA gene mutation had a better survival rate (11%) than those women who had a triple negative breast tumor and no BRCA gene mutation. The average age for the women in the study were 36 years old.
To learn more about the study please click on this link. http://bit.ly/2gmaMSc
December 9th, 2016
What the study is about: A large research study is currently recruiting females who carry a mutation in their PALB2 gene. Those with a mutation in their PALB2 gene have an increased risk for developing pancreas and breast cancer in their lifetime. The researcher's mission is to determine the best treatment for women with a PALB2 mutation and breast cancer. Through a better understanding, we can personalize breast cancer treatment to increase survival, and determine how to best manage at risk family members to detect cancer early or prevent it.
Who is eligible: Women with a PALB2 mutation who have been diagnosed with breast cancer.
Learn more: To learn more about the study and how to participate please click on the link below.
September 29th, 2016
After nearly 30 years at UCSF, nurse coordinator Debby Hamolsky is leaving us for her next adventure. Please join the UCSF Carol Franc Buck Breast Care Center in honoring her legacy with a day exploring food, science, and breast health.
In the spirit of Debby’s decades of commitment to emotional and educational support for women with breast cancer, our panel topics will focus on personalized screening and treatment and living well during and after cancer. Between panels, join us for science demonstrations, healthy food tastings, and updates on trials and programs available through the Breast Care Center. This educational event is free and open to all.”
September 22nd, 2016
The National Comprehensive Cancer Network (NCCN) releases guidelines for physicians and providers to refer to with diagnosis and treating cancer. They also have section dedicated to hereditary cancer syndromes. Recently, NCCN released it's newest version of NCCN Guidelines which included breast and ovarian cancer management based on a person's genetic test results. Below you will find a number of genes associated with breast and ovarian cancer and the NCCN's recommendations for when and how to screen for and prevent breast and ovarian cancers.
September 14th, 2016
There are a percentage of individuals in the San Francisco Bay Area who may be carrying disease-causing mutations in their genes that increase their risk of developing breast, ovarian, pancreatic, prostate or skin cancers. The UCSF Center for BRCA Research believes that these individuals are being missed by the national and insurance-set guidelines created to identify those in need for hereditary cancer screening. Population-based testing will allow us to identify and better serve individuals and their family members who are at risk for hereditary cancer.
By participating in the UCSF Population Health and Cancer Testing (PHACT) study you will be provided with a free saliva collection kit donated by Color Genomics, a genetic laboratory. Thirty genes will be analyzed, including BRCA1 and BRCA2, to identify mutations that increase the chance of cancer in both men and women and genetic counseling support will be available with every test.
If you are interested in participating in this study please email email@example.com
*Participants must also have a working email address
August 9th, 2016
A recent study found that mutations mismatch repair gene, MSH3, have been found to cause colon polyps and colon cancer. Researchers found that if someone inherits 2 mutations in their MSH3 gene they will have an increased risk for developing 10's-100's colon polyps, colorectal cancer, gastric cancer, and an early-onset astrocytoma. More research needs to be done to better understand this new hereditary polyposis/cancer syndrome.
Why are we sharing this with you? We know that some of you on Kintalk may not have a specific hereditary cancer syndrome diagnosis but are looking for information. This new gene may help identify individuals who have had unexplainable colorectal polyposis and cancer diagnoses. This new hereditary polyp and cancer syndrome is autosomal recessive. This means that you may not see a family history of cancer. Or you may only see a group of siblings that all have the same colon polyps and GI cancers. If you have a personal or family history of multiple colon polyps (the adenomatous type) and GI cancers and have tested negative for Lynch syndrome or FAP then you may want to talk with your genetic counselor about this new recessive hereditary polyposis/ cancer syndrome.
August 3rd, 2016
As we know, women who are diagnosed with Hereditary Breast and Ovarian Cancer (HBOC) Syndrome have an increased risk
of breast and ovarian cancer. In order to reduce the risk of these cancers surgical recommendations are often made. While these surgeries dramatically reduce a women's risk of breast and ovarian cancer, a recent study found that many women with BRCA gene mutations are not fully educated on how these surgeries will impact their sexuality and other aspects of their lives. The study found that women who underwent the surgeries with little education on the impact of these surgeries suffered on a personal level.
Why are we sharing this? We know that these risk reducing surgeries can save the lives of women with HBOC Syndrome. However, it is important to understand how these surgeries will impact ones life. Counseling and education on topics like surgical menopause should be sought. Discussing the impact of these surgeries on sexuality and life style should be discussed with ones providers as well as those who have already undergone the surgeries. It can also be helpful if a husband/partner participates in these educational discussions so that they can be on the same page and help support a women through these big life and body changes. Education and discussion with ones providers will help in preparing for these surgeries.
To read the article click on this link:
To learn more about surgical menopause due to a risk reducing salpingo oppherectomy:
May 3rd, 2016
Do you or your family members have an inherited risk for cancer because of a BRCA1 or BRCA2 mutation, Lynch Syndrome or a mutation in ATM, CHEK2, or another gene? We know that you have a variety of medical and personal concerns related to your hereditary cancer risk. For example, what does this mutation mean for you? For your family members? Where do you go to find the specialists you need? How can you learn about the latest research?
We are excited to announce a new UCSF program focused on hereditary cancer including BRCA1 and BRCA2 mutations, Lynch Syndrome, and other inherited cancer conditions. The Center for BRCA Research brings together research, education, and coordinated expert clinical care. The clinical work is based in the Hereditary Cancer Clinic, located at the Mt. Zion campus at 1600 Divisadero Street in San Francisco. The goal of the clinic is to provide one place where patients can come for information and education, support, and coordinated clinical care.
Hereditary Cancer Clinic services include:
The Hereditary Cancer Clinic is now open and taking appointments for patients who have mutations or want to learn more about the mutation in their family. We are located at the Helen Diller Family Comprehensive Cancer Center, 1600 Divisadero Street, H Building, 4th Floor (Mt. Zion Campus)
To make an appointment with our providers, please call (415) 353-9797 and our practice assistant will assist with scheduling and information or visit The Center for BRCA Reseacher's website: http://brca.ucsf.edu
The Hereditary Cancer Clinic team:
Director: Dr. Pamela Munster
Fellow: Dr. Mallika Dhawan
Nurse Practitioner: Kelly Williams
Genetic Counselors: Niki Lovick; Julie Mak
Clinical Research Coordinator: Kerry Inokuchi
Program Manager: Pagan Morris
Practice Manager: Jessica Davis
Practice Assistant: Meron Abbay
April 5th, 2016
With so much new information on hereditary cancer it is important to be up to date on the most current research and recommendations. What better way to do that than attending a conference where you can not only learn about a hereditary cancer syndrome, like HBOC, while also connecting with others who have hereditary cancer. Below is a summary of different educational conferences for those with different types of hereditary cancer.
Do you know of a hereditary cancer conference not listed? Let us know so we can share it with our Kintalk members!
and their families
For: Individuals and their family members with Hereditary Breast and Ovarian Cancer (due to BRCA1, BRCA2 and other genes that cause HBOC).
When: Wednesday, May 11, 2016
Where: Centre Mont-Royal, Montréal, Québec, Canada
Overview: The purpose of this event is to provide interested members of the general public who are affected by the BRCA1/2 genes, with practical up-to-date information about hereditary breast and ovarian cancer, as well as an opportunity to network with others living with BRCA.
We expect an audience of over 100 gene carriers, at-risk individuals and family members from across Canada to take advantage of the opportunity to hear leading experts in the field of BRCA from around the world. They will learn about:
* Cancer risks, surveillance, and risk reduction options for BRCA1 and BRCA2 carriers;
* The latest in HBOC research;
* Surgical approaches to mastectomy & breast reconstruction;
* Body image and sexuality after risk reducing surgery or cancer;
* Genetics of HBOC: BRCA and beyond;
* The experiences of others living with BRCA, including patient testimonials.
The 2016 International Li Fraumeni Syndrome Conference and The 3rd Annual LiFE Consortium and LFS Association Conference
When: June 1-3
Where: Columbus, Ohio
Overview: We can confirm that 30 of the world’s foremost physicians and scientists in the fields of cancer genetics and LFS research will present at this conference. We anticipate more than 250 physicians, scientists, specialists, and family members affected by LFS from across the globe will participate.
Joining FORCEs Against Hereditary Cancer®
When: October 6-8, 2016
Where: Hyatt Regency Grand Cypress in Orlando, FL
Overview: The conference will present a wide range of topics and the latest research on these cancers. Attendees include people concerned about hereditary cancer: survivors, previvors, people with a BRCA mutation or family history of cancer, patient advocates, researchers, and health care providers who treat high-risk patients.