Hello everyone and welcome to my BRCA website for previvors and survivors. I’m hoping that together we can create a BRCA home where we can form a sisterhood and help each other. I’m going to try my hardest to get us the most factual and current information that is out there, where we can all stay informed, and make the best decisions about our health, and try to deliver it in a simple and easy to understand way. I welcome all feedback and any recommendations! IF YOU HAVE ANY TROUBLE NAVIGATING THE SITE…JUST EMAIL ME. LOST PASSWORD? EMAIL ME! If you are a previvor  or survivor, please feel free to tell your story in the forum, start a discussion, ask a question, or send me an email. If you have an event that you would like to publish, just let me know!

Please register and introduce yourself in your home state whether or not you are a previvor or survivor. If you belong to a support group–please list it for new members -also in your home state. I would like a woman or her family to be able to find support in her own community. It’s easy, just register (bottom right-under META) then after you get your password, go to the forum, click on your home state and hit-add a new topic.

Please show your support for all the women in your life - your mothers, sisters, daughters and friends.

We are international & domestic now!

We have raised lots of money for our cause & helped many people. I hope to continue to grow with your help. If any of you would like to see a special forum, just let me know. Let me know how you are doing as well!

The best part of this site is that you may remain anonymous! All you have to do is let me know you’d like to participate & I will post anonymously for you. I believe that is why this site has become so popular so fast. You don’t have to join to participate, although if I have your email address I can send you regular private updates.

The website is basically running by itself now. As new info becomes available, it will be posted. If you readers hear of anything important to share—please do!

This coming year my goal is to continue helping women & their families. When you hear of a family needing help, be there to shop, carpool, donate meals, get  gift certificates for salons, entertainment, dining, etc.  Let’s stay educated about nutrition, yoga, exercise…you think of it—let’s make it happen!

I would also like to have our BRCA awareness day in October to coincide with Breast/Ovarian Cancer awareness.  We need to involve our communities. Educate & make people aware & sensitive to our cause.

Be well you all.
Wishing you all continued good health. Thanks for your support!
x0×0
Tobey

My name is Sharlene Hesse‐Biber and I am a Sociologist and Professor at Boston College. I am conducting a study on women who have tested positive for the BRCA 1 and 2 genes and have stage IV breast cancer. I hope to address the issue of why women seek this genetic testing and how they respond to a positive result, as well as the roles that other people in their lives play throughout the pre‐ and post‐ testing process. I would like to set up a time to explore your experiences with genetic testing for the BRCA 1 and 2 genes. Such an

interview would take about a half hour. Your participation in this research is completely voluntary, and if you choose to participate, you may withdraw from the study at any point throughout the project. I can interview you over the phone or if you are in commuting distance I can interview you in person.

I would also like to take a moment to tell you a little more about the study. I aim to address a current lack of research on women’s experiences with genetic testing for the genes linked to breast cancer and their responses to a positive result. Some of the questions we will explore are:

• How do women seek genetic testing for breast cancer?

• What is the lived experience of women who have received a positive result? How is this affected if they have a family history of breast cancer?

• What decisions, if any, do they make once they have a positive result? Is there a difference between their immediate and long‐term decisions?

• What role do their immediate family network, close friends, and co‐workers play in their decision to get tested and in their post‐testing experience?

If you are interested in participating in this study, please email me at hesse@bc.edu. I am also happy to answer any questions or concerns you may have.

Thank you for your time and I look forward to hearing from you soon.

Sincerely,

Sharlene Hesse‐Biber

Professor, Department of Sociology, Boston College

Director, Women’s and Gender Studies Program, Boston College

BRCA NEWSWORTHY

ASCO Update: Emerging agents to change the landscape of ovarian cancer treatment

June 8, 2010 Analysis by: Jason Tse

ASCO or the American Society of Clinical Oncology has recently come out & said that they have had “encouraging” results with parp inhibitor drugs when combined with chemotherapy in the fight against breast & ovarian cancer. These drugs are Avastin, olaparib, AMG386, farletuzumab & voreloxin. Avastin is the frontrunner in these drugs & hopefully will be approved in 2011 to fight Ovarian Cancer.

Follow this link for this very interesting, promising news!

http://www.glgroup.com/News/ASCO-Update–Emerging-agents-to-change-the-landscape-of-ovarian-cancer-treatment-48853.html

BRCA NEWSWORTHY

Melbourne Trial of Breast Regrowth Surgery Neopec

11/11/09 reported by: Grant McArthurfrom perthnow

There’s a STEM CELL BREAKTHRU STUDY going on in Australia to help breast

Cancer patients, BRCA patients GROW BACK THEIR OWN BREAST TISSUE.

If this study is successful it could replace implants & breast reconstructions going on today.

The procedure uses the stem cells of our own fat to regenerate the growth of new breast tissue.

Follow this link for the entire story & video: http://www.news.com.au/perthnow/story/0,21598,26338552-5017320,00.html

BRCA NEWSWORTHY

10/27/09 news release: from St. Mary’s Hospital -NJ

DVS (developed by Sicel Technologies, Inc.) stands for dose verification system & it is being used only at St. Mary’s Hospital in Passaic, NJ. It is an implantable device & approved by the FDA. It lets the doctor know how much radiation is being absorbed instead of just guessing, therefore giving the patient a more exact dose of radiation therapy to their tumor.

Please follow this link for more information:

http://medicalphysicsweb.org/cws/article/newsfeed/40831

BRCA NEWSWORTHY

New Blood Test for Detecting Breast Cancer Comes Soon

reported by Cindie Leonard from Naturalnews.com

Please follow this link: http://www.naturalnews.com/z027324_cancer_brst_blood.html

Doctors & researchers are studying the risk of early breast x’ray vigilance for BRCA positive people & the risk of it causing radiation- induced breast cancer in this high risk group. Right now mammography is the standard tool that doctors use to screen for breast cancer lesions. A new blood test called BC-SERAPRO (it measures certain proteins in blood) is being developed to replace the mammography!

BRCA NEWSWORTHY

Anticancer Power of Supermarket Mushrooms by Ralph W. Moss, Ph.D

Please follow this link: http://www.cancerdecisions.com/content/view/280/2/lang,english/

According to: Dr. Shiuan Chen, director of the Division of Tumor Cell Biology at the Beckman Research Institute of the City of Hope in Duarte, California eating 100 grams or even less of mushrooms per day could prevent new breast cancers. Apparently mushroom extracts are aromatase inhibitors. Aromatase is an enzyme in our bodies that help us make estrogen. Estrogen feeds breast tumors so women with estrogen positive tumors take aromatase inhibiting drugs after their breast cancer diagnosis. It would be wonderful to see women eating mushrooms to inhibit aromatase production instead of taking anastrazole or Arimidex.

COME ON RESEARCHERS—-THIS LOOKS AWESOME!

BRCA NEWSWORTHY

Go to our forum.  Click on reader recommended links. Click on awesome breast cancer breaking news & follow the link for the story & the video. Canadian reasearchers decode breast cancer tumor DNA. This story was brought to my attention through: CTV.CA News.

The researchers decoded the patient’s metastic breast cancer & found all the mutations. If they can understand the mutations that cause cancer…they can cure it!

Another article also can be found in our same forum: More news out of Canada.

This article is titled: Tiny Chip Can Measure Estrogen in Breast Tissue. This story was brought to my attention by news.yahoo.com & the writer is: Julie Steenhuyser.

It’s a microchip device that can screen or see if breast cancer treatments are working by measuring estrogen levels. This research is still in experimental stages…but it gives us all a lot of hope.

BRCA NEWSWORTHY

Aberrant luminal progenitors as the candidate target population for basal tumor development in BRCA1 mutation carriers. By the following:

Lim E, Vaillant F, Wu D, Forrest NC, Pal B, Hart AH, Asselin-Labat ML, Gyorki DE, Ward T, Partanen A, Feleppa F, Huschtscha LI, Thorne HJ; kConFab, Fox SB, Yan M, French JD, Brown MA, Smyth GK, Visvader JE, Lindeman GJ.

The Walter and Eliza Hall Institute of Medical Research, Parkville, Victoria, Australia.

Nat Med. 2009 Aug;15(8):907-13. Epub 2009 Aug 2. PMID: 19648928 [PubMed - in process]

Follow this link please: http://www.ncbi.nlm.nih.gov/pubmed/19648928

Researchers have found that breast tissue from BRCA1 positive women have large “luminal progenitor cells.” Originally it was thought that basal like breast cancers in BRCA1 positive women originated from the mammary stem cell, now it is being suggested that these cancers are from abnormal luminal progenitor cells.

When researchers find the reasons for cell changes causing breast cancer they will be able to target therapy cures to them.

BRCA NEWSWORTHY

New Cancer Vigilance reported by: Marilynne Marchione from The Associated Press. Follow this link: http://news.yahoo.com/s/ap/20090812/ap_on_he_me/us_med_breast_

cancer_lymph_nodes

It is being suggested that Breast Cancer patients with any lymph node involvement/early stage breast cancer – stray-microscopic cells may have a higher incidence of recurrent disease & may need more treatment than just surgery. Not all women are given estrogen blocking drugs & or chemo treatment. Some women have less aggressive breast cancer treatments—this is what is in question—should it be more aggressive?