Improving The Lives Of Those Affected By Brain Tumors

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Get InformedBrain Tumor FactsClinical TrialsNewsVideosSmarter ResearchWhat We FundHow We FundWho We FundScientific GatheringsGet InvolvedWays To GiveJoin An EventPersonal FundraisingAbout UsOur StoryOur TeamOur PartnersTHROUGH OUR EYES Improving The Lives Of Those Affected By Brain Tumors By Guest Blogger: Ashley Varner, Oncology Social Worker Article | February 20, 2013

Recently ABC2 was generous enough to offer to post a blurb about a study I’m working on on their Facebook page.? You might have seen it – I am Ashley Varner, a social work doctoral study studying the lived experience of family members living with and caring for someone with a primary malignant brain tumor.

Between 4 pm on a Tuesday and 4 am on a Wednesday morning more than 100 individuals responded to this request!?

This remarkable show of interest moved me to tears. ?Clearly this research matters. Many of your emails were pages long, generously sharing your experience.? About 80% of the emails I received in those first 12 hours were from individuals whose loved ones had died, yet you are still dedicated to improving the lives of those affected by brain tumors.

For this initial study, my research question is, “What is the lived experience of adult family members who live with an individual diagnosed with a primary malignant brain tumor?”? This is a pilot, qualitative study using grounded theory.? Thanks to your generosity, I have completed data collection and am now transcribing the interviews. ?I look forward to sharing the results.? (If you responded and have not heard from me, please know I am responding to each email – it’s just taking a little time to work my way through the dozens and dozens of responses I received!)

But wait!? There’s more to come!

If you are still interested in a year or so, my dissertation will also focus on those who have cared or are caring for someone with a primary malignant brain tumor.? I am fortunate enough to have received a grant from the American Cancer Society to pursue this research.? If you’d like to be put on a list of people to be contacted when I begin this research study please email me at 39varner@cardinalmail.cua.edu.

Why This Topic of Research?

Some of you asked in your emails what made me pick this topic.? I came to it honestly, but not through family experience.? I’ve been an oncology social worker for more than 15 years.? (For those of you who have never heard of an oncology social worker, we are a growing profession who? focus on the emotional and social well-being of those affected by cancer, both those who are diagnosed and those who care about someone with a cancer diagnosis.)? I have had the incredible privilege throughout my career of working with many people affected by malignant brain tumors.? As most of you know, it is a different experience from other kinds of cancer.? I believe there is a tremendous need to understand the experience of those caring for someone with a brain tumor in order to develop programs and interventions that will improve the experience for both those who are diagnosed and those who care about them.? Of course we need to find a cure, but until we find a cure, we also need to find ways to improve quality of life for those living the experience.

A Shameless Plug

If you are in the Washington, D.C. area and affected by a brain tumor, please join our ABC2 sponsored support group on the 1st Thursday of every month at George Washington University’s Medical Faculty Associates.? For more information contact me at 39varner@cardinalmail.cua.edu

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Main Image Credit:?Ashley VarnerNewsletter Issue:?February 2013 Share| More News April 2, 2013 10:00 AM White House Announces BRAIN Initiative The BRAIN Initiative Challenges Researchers to Unlock Mysteries of Human Mind. February 1, 2013 06:12 PM Low Grade Glioma Research Workshop In partnership with UCSF and MD Anderson, ABC2 brought together researchers from leading medical centers and biotech companies to strategize new therapeutic paths to treat Low Grade Gliomas. January 31, 2013 08:48 PM ABC2-Funded Research Featured in Scientific American The collaboration between academic and industry researchers aims to develop a test to detect genetic brain tumor mutations in cerebral spinal fluid and blood.??? Join us in our fight for a cure! This form needs Javascript to display, which your browser doesn't support. Sign up here insteadTo sign up to receive our emails, fill in the following fields and hit submit. Thanks, and welcome!first namelast name* email* required ? Links HomeDonateGet InformedSmarter ResearchGet InvolvedAbout us Get Involved DonateWays to GiveJoin an EventPersonal Fundraising Twitter Connect With Us Contact UsGet in touch with usFacebookMeet new friends and join the discussion in FacebookTwitterTweet and follow us. News, press & infoRSS Feeds Subscribe to News Copyright 2011 ABC2 All Rights Reserved.Privacy Policy

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A BRCA Gene Mutation in the Family Does Not Increase Cancer Risk for Those Without the Mutation

For women who do not have a BRCA1 or BRCA2 gene mutation, having a close relative with one of these mutations does not increase breast cancer risk. These results were published in the Journal of Clinical Oncology.?

Inherited mutations in two genes—BRCA1 and BRCA2—have been found to greatly increase the lifetime risk of developing breast and ovarian cancer. Mutations in these genes can be passed down through either the mother’s or the father’s side of the family.????

Women who test negative for a BRCA gene mutation—but who have family members with a mutation—are generally thought to have a risk of breast cancer that’s similar to that of women in the general population. A study published in 2007, however, raised concerns that relatives of BRCA mutation carriers may have a substantially increased risk of breast cancer even if they test negative for their family’s mutation.[1]?

To further explore cancer risk among close relatives of people with BRCA mutations, researchers conducted a study among more than 3,000 families with at least one case of breast cancer; 160 families had a BRCA1 mutation and 132 families had a BRCA2 mutation.[2]?

For women without a BRCA mutation, breast cancer risk was similar whether or not the woman’s family had a BRCA mutation. These results suggest that coming from a family with a BRCA1 or BRCA2 gene mutation does not increase cancer risk for those who test negative for the mutation.?????

Although this is reassuring news, women who test negative for their family’s gene mutation should continue to follow cancer screening guidelines. These women do not have the very elevated cancer risk that their affected relatives have, but they can still get cancer.???

References:?

Posted November 9, 2011

[1] Smith A, Moran A, Boyd MC et al. Phenocopies in BRCA1 and BRCA2 families: evidence for modifier genes and implications for screening. Journal of Medical Genetics. 2007;44:10-15.?

[2] Kurian AW, Gong GD, John EM et al. Breast cancer risk for noncarriers of family-specific BRCA1 and BRCA2 mutations: findings from the Breast Cancer Family Study. Journal of Clinical Oncology. Early online publication October 31, 2011.?

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