BRCA-patient survey
http://preview.tinyurl.com/BRCA-Pt-survey
Lets get our feelings out there! Please participate in my 5 minute online survey!
pass it on!
THANK YOU Sewanhaka H.S. Cosmetology-A JOB WELL DONE!
YOU & YOUR STUDENTS ARE THE BEST….THANK YOU THANK YOU THANK YOU…We are so grateful!
You put alot of time and effort into this ♥ and we all had a good time.
Most of all…
WE THANK YOU ALL FOR YOUR MOST GENEROUS DONATIONS
#BRCA #BREAST CANCER #OVARIAN CANCER #PREVIVORS #SURVIVORS
BRCA PREVIVORS AND SURVIVORS—-check this out!
I just finished reading a book from one of our BRCA previvors and survivors members and I wanted to recommend it to anyone facing the preemptive decision of having a bilateral prophylactic mastectomy and or oophorectomy.
The book is: BEYOND THE PINK MOON by Nicki Boscia Durlester. You can follow our link for all information. If you would like an autographed copy of the book, you can e-mail her directly at: nicki@beyondthepinkmoon.com. Shipping will also be free.
Please order her book, as it is a very inspiring account and honest look at the issues we face. Nicki, has also offered to give back to our previvor and survivor community, by donating 25% of the books sales if you mention previvorsandsurvivors.com.
It is her personal memoir of legacy, loss and survival. I found the story to be unbelievably riveting. No matter how many stories I hear from our members, it always moves me to hear someone’s journey and what brought them to our site. We, who are diagnosed positive with the BRCA gene mutation, all have the same fears for ourselves and our families, and somehow having this sisterhood here, brings us all together.
As always,
Be well you all…..
Tobey
MEN ARE WELCOME TOO!
Request for interview with women ages 18-39 who have tested positive for the BRCA 1 and 2 genes
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. 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 MUTATION & INFERTLITY
BRCA NEWSWORTHY
Found this article: BRCA1 AND DEPLETION OF OOCYTE RESERVE
This seems to be where the info came from: American Society for Reproductive Medicine (ASRM) 65th Annual Meeting: Abstract O-103. Presented October 21, 2009.
http://cancerology.blogspot.com/2009/10/brca1-and-depletion-of-oocyte-reserve.html
Apparently researchers are studying the fact that BRCA positive women have lowered oocyte reserves & infertility issues.
These findings were presented by Dr. Oktay from the Dept. of OBGYN at the Westchester Medical Center-NY Medical College in Valhalla.
Dr. Keefe Chair of the Dept. of OBGYN at the NYU Langone Medical Center in NYC says that based on this info women who are BRCA+ should be advised that they may lose their eggs earlier than women not affected with the BRCA gene mutation.
Please place any comments here: http://previvorsandsurvivors.com/forum/general-discussion/brca-mutation-infertility/page-1/post-215/#p215
Breast Reconstruction Study Out of Toronto
10/18/09 submitted by: Toni Zhong M.D. FRCS(C)
BRCA NEWSWORTHY
If you are living in Canada and need to have a mastectomy in the near
future, you need to know about this new breast reconstruction study out of
Toronto. This study is especially suited to BRCA carriers. We have just
opened enrolment at University Health Network and Women’s College for an
exciting randomized controlled trial comparing outcomes following one-stage
direct to permanent implant using Alloderm compared to the traditional
two-stage TE/implant reconstruction at the same time as skin-sparing
mastectomy or nipple sparing mastectomy. This is a fully funded study that
is supported by the American Society of Plastic Surgeons and we have full
ethics approval at our four participating sites (Mount Sinai, Women’s
college, Princess Margaret, and Toronto General Hospital). Currently in
Canada, only very limited hospitals have the authority to use Alloderm
because of its high price, but it is approved by Health Canada and has been
used in the US for many years with an excellent track record. The
bottomline is that Alloderm has the potential to convert the traditional
practice of 2-stage implant recon to only one stage with better safety and
aesthetics than without this material. If you join this study, you will
have a 50:50 chance of receiving the Alloderm implant reconstruction. But
even more importantly, there are many benefits to being in a high-quality
clinical trial including being treated by the most experienced implant
breast reconstruction surgeons in Canada. In summary, this study will give
high level evidence that can have important implication on QOL of breast
recon patients and potentially influence our current surgical practice.
Please visit our website at http://www.torontoalloderm.ca or call our
research coordinator Mrs. kate Butler at 416-340-4800 ext 2343 or email:
kbutler@uhnres.utoronto.ca.
OUR FIRST BRCA AWARENESS DAY 10/4/09!
BRCA NEWSWORTHY
We have declared 10/4/09 our first BRCA AWARENESS DAY!
We have decided to educate people about BRCA PREVIVORS! Help us spread the “previvor” word! The more we educate, the more we take the stigma away…the more lives we save!
PLEASE MAKE A CHARITABLE DONATION TO A BREAST CANCER ORGANIZATION IN HONOR OF PREVIVORS&SURVIVORS!
Please show your support for all the women in your life – your mothers, sisters, daughters and friends!
DO IT NOW…DO IT TODAY!
Olaparib a new drug for genetic breast cancer article from The Times Online 6/1/09
BRCA NEWSWORTHY
New drug olaparib offers hope to women with genetic breast cancer by David Rose
Follow this link: http://www.timesonline.co.uk/tol/life_and_style/health/article6400852.ece
Olaparib is made by AstraZeneca & is being used in clinical trials to treat & or prevent cancer in high risk or BRCA families. They feel this drug is very promising in blocking the protein that makes cancer cells –causing only the cancer cell to either die or shrink. (BRCA patients have the mutated gene that is supposed to repair or fix damaged DNA—therefore when the repair doesn’t work properly mistakes in the DNA accumulate, do not repair & cancer develops.)
Experimental Cancer Drug article from USA Today 5/27/09
BRCA NEWSWORTHY
Experimental cancer drugs cut tumors off from repair tools by Liz Szabo
Follow this link: http://www.usatoday.com/news/health/2009-05-27-asco-cancer-drugs_N.htm
These new experimental cancer drugs are called PARP inhibitors & they are being used in women whose tumors don’t respond well to hormones or Herceptin. These drugs are being studied in BRCA positive patients as well as cancer patients. BRCA patients have the mutated gene that is supposed to repair or fix damaged DNA—therefore when the repair doesn’t work properly mistakes in the DNA accumulate, do not repair & cancer develops. Apparently these PARP inhibitors are a repair enzyme that clean up & repair these damaged cells.