Hello everyone and welcome to our BRCA website for previvors and survivors. On May 23, 2008 previvorsandsurvivors.com was born and October 2010 previvorsandsurvivors.com, Inc. a Not for Profit group was created.
We are a 501 (c) (3) ALL VOLUNTEER GROUP where no one here gets paid or gets compensated in any way for their services.
The mission of our group is to provide the support, skills and resources to all people in relation to the BRCA gene and hereditary breast and ovarian cancer. It’s a place where ordinary people help ordinary people. The difference between our project and the many others out there is that we are supporting people who have to come to terms with a very unique agonizing decision, do I have a double mastectomy and oophorectomy without a definitive cancer diagnosis?
“The term “PREVIVOR” was coined by FORCE in 2000, and they have consented to the use of “PREVIVOR” on this website.” Previvor as we use it, refers to a person who does not have cancer, but who has tested positive for the BRCA gene mutation- which puts them at an incredibly high risk of developing breast and/or ovarian cancer. This means they have up to an 87% chance of developing breast cancer in their lifetime and a 44% chance of developing ovarian cancer. Some people have found out that they have the BRCA gene mutation only after they have already developed breast/ovarian cancer-therefore a SURVIVOR. We now have to worry about issues involving passing down this mutation to our families.
We are an International support group and provide a site for men and women who are involved with hereditary breast and ovarian cancer, whether they are current fighters, survivors, or previvors. The site is set up to help these people get information and hear other people’s stories that have been affected by this.
Our amended mission (6/7/13) is to raise funds for other 501 (c) (3) tax exempt organizations involved in scientific research related to breast or ovarian cancer or the BRCA gene.
We have some money left to help women and their families here in our community. See our “services” page. Since we are a small group, at this time we can only help our neighbors here on Long Island with our “services.” We provide hairdressers to women post mastectomy as well as cooked meals and carpools to doctor’s appointments to help ease the burden and stress for the patients and their families at this difficult time.
What can you do? Participate in the forum, shop for a family, carpool children, donate meals, get gift certificates for salons, entertainment, dining, etc.. These little things mean a lot to a family going through a difficult time. Let’s stay educated about nutrition, yoga, exercise…you think of it—let’s make it happen.
We need to involve our communities… educate and make people aware and sensitive to our cause. Please show your support for all the women in your life – your mothers, sisters, daughters and friends and donate today.
If any of you would like to see a special forum, or if you hear of anything important to share, just let us know. This site is for YOU. We will continue to get you 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. We welcome all feedback and any recommendations. IF YOU HAVE ANY TROUBLE NAVIGATING THE SITE…JUST EMAIL US. LOST PASSWORD? EMAIL US. 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 an email. If you have an event that you would like to publish, just let us know. If you belong to a support group–please list it for new members -also in your home state. We would like a woman or her family to be able to find support in her own community. It’s easy, just register then after you get your password, go to the forum, click on your home state and hit-add a new topic
The best part of this site is that you may remain anonymous. All you have to do is let us know you’d like to participate and we will post anonymously for you. We believe that is why this site has become so popular so fast. You don’t have to join to participate, although if we have your email address we can send you regular private updates.
Be well you all.
Wishing you all continued good health. Thanks for your support.
GUEST BLOG POST- – - www.pinkandbluemovie.com
YOUR HELP IS NEEDED PLEASE…
I started First Prize Productions in Los Angeles, Ca in 2004 after relocating from Connecticut. I have produced and directed many different shows from the Emmy nominated documentary, America’s Deadliest Season, which launched THE DEADLIEST CATCH for the Discovery Channel, and two number one network shows for FOX and NBC.
Producing reality is one thing, but living it is another. There is nothing more real then cancer. Simply put, Pink and Blue will save lives.
I lost my grandmother to breast cancer two weeks before I was born, my aunt to ovarian, and then my sister died three years ago from triple negative breast cancer and testing positive for the BRCA2 gene.
During the time my sister Sammy was going through treatment, my girlfriend Stephanie’s breast cancer returned, and my other sister Lisa had a prophylactic double mastectomy after she too tested positive for BRCA2. Three years and ten days later, my wild sister Sammy with a great soul, vivid imagination, incredible sense of humor and endless amounts of energy and spirit, was gone. My perspective on quality of life was changed forever.
During my sister’s courageous BATTLE, my other sister, Lisa (from the East Coast), also tested positive for the same BRCA2 gene mutation. After a year of research and multiple doctor consultations, she decided to have her ovaries removed as the first step in proactively trying to stay ahead of cancer. Lisa decided she no longer wanted to feel like a ticking time bomb and made the brave decision to have a prophylactic double mastectomy. In doing so, she reduced her odds of getting breast and/or ovarian cancer from 80-90% to a 2% chance. As challenging as it was, she has never looked back.
My girlfriend Stephanie had breast cancer back in 2006? Well, wouldn’t you know that during my sister Sammy’s fight, Stephanie’s breast cancer returned. I traveled between coasts doing the best I could to help support the people that I loved. I never realized just how prevalent breast cancer was in so many lives
Watching Sammy battle the disease head on until she drew her last breath, I knew it was time for PINK AND BLUE. Especially after testing positive for BRCA 2 myself.
The PINK AND BLUE documentary, which I am producing and directing takes a profound look into the BRCA world examining what, it is and how this mutation puts both women and men at a higher risk of developing numerous cancers. There is a higher percentage of men dying from breast cancer then women. Men won’t go get checked, or doctors say don’t worry about that little growth until it is too late.
The film spotlights key elements that need to change in order for more men to get the help they need without shame and embarrassment. Men won’t get checked for breast cancer because they think it is only a female disease.
Male breast patients have some of the most ridiculous and uncomfortable situations they must endure. Why do men with breast cancer have to feel shame and embarrassment based on societal, “norms?” It is tough enough being diagnosed with male breast cancer in such a pink world, that any emotional layers outside of the treatment just add undue anxiety, stress and fear.
Most organizations in the breast cancer realm have the word women on the Why can’t this change? Why don’t the questionnaires for new oncology patients have both? What about leaving the gender off of the informational pamphlets altogether. Do men really have to answer questions about their menstrual cycle and dryness? Why is there only a diagram of a female breast on these basic forms? Why do male oncology patients have to wear pink robes? What about twenty blue robes? It is these little gestures of respect for male patients that will tear down the wall of insecurity about this disease,
I have attached world-renowned specialists from Cedars-Sinai, Johns Hopkins, the Mayo Clinic, and the Pink Lotus Breast Center to weigh in with the latest information on BRCA mutations, breast cancer and the various changes that can be addressed for male patients. These experts and this film will help the Blue step out from the shadows of the pink. This documentary is not about one color or the other. It is meant to make the pink pinker, and the blue, bluer
PINK AND BLUE will not only educate people about male breast cancer but it will spotlight key elements that caregivers can change for men to get the help they need without shame and embarrassment. Breast cancer is not just a female disease. Awareness to this disease is paramount in saving lives. These experts and this documentary will finally help the Blue step out from the shadows of the pink.
Producing reality is one thing, but living it is another. There is nothing more real then cancer. Simply put, Pink and Blue will save lives.
We need help. We would appreciate your support in educating people not only about BRCA, but also to help stop male breast cancer.
HBOC Week and National Previvor Day 2013
H.Res.1522 – Expressing support for designation of the last week of September as National Hereditary Breast and Ovarian Cancer Week and the last Wednesday of September as National Previvor Day.111th Congress (2009-2010) http://beta.congress.gov/bill/111th/house-resolution/1522
RESOLUTION can be read at: http://www.gpo.gov/fdsys/pkg/BILLS-111hres1522ih/pdf/BILLS-111hres1522ih.pdf#page=1&zoom=auto,0,800
This year previvorsandsurvivors.com is celebrating HBOC (hereditary breast and ovarian cancer) by supporting Dr. Tuohy and the Cleveland Clinic and the incredible development of a breast cancer vaccine.
We hope you will join us in this endeavor and help us spread the word so that the breast cancer vaccine will get it’s well earned FDA approval quickly. http://health.clevelandclinic.org/2013/09/a-step-closer-to-a-breast-cancer-vaccine/
You can donate and read about it all here: http://previvorsandsurvivors.com/events/
Be well you.
READY. SET. RIDE!
The Ovarian Cycle Cleveland Ready. Set. Ride! is an indoor cycling event dedicated to raising funds to support much-needed ovarian cancer research.
OCTOBER 12, 2013
10:30 am to 12:30 pm
24945 Detroit Avenue
Westlake, Ohio 44145
We BELIEVE the time has come for Dr. Tuohy and the Cleveland Clinic.
First Preventive Breast Cancer Vaccine Awaits Funding.
Dr. Tuohy’s vaccine is 100% effective in mice and now just needs funding to begin the costly clinical trials in humans.
We are starting our “WE BELIEVE” campaign to raise funds for Dr. Tuohy and the Cleveland clinic to move forward with this great work and finally find the VACCINE TO END BREAST CANCER!
Please join us… SPREAD THE WORD… DONATE…100% of your donation will go to Dr. Tuohy and his vaccine to end breast cancer. You can find further information about Dr. Tuohy by visiting
Watch these great videos:
First Steps Towards Breast Cancer Vaccine (YouTube) - Credit to Cleveland Clinic
Maureen’s Medical Moment (YouTube) – Credit to WNDU, an NBC Affiliate.
Breast Cancer Researchers Plead for More Funding (Youtube) – Credit to VOA Video.
Stay tuned for our fundraisers.
Researchers at the National Institutes of Health and the Johns Hopkins University are seeking previvors and their partners to participate in a study. We want to learn more about how couples cope and adapt when a woman has a BRCA1/2 mutation. The study consists of a survey that both members of the couple are asked to complete on their own. Each survey takes approximately 15-30 minutes.
I’m a freelance journalist working on a pitch around the Supreme Court’s recent decision that declared genes can’t be patented. I’d like to focus on how this decision will affect women who carry the mutated BRCA gene. Specifically, I’m looking to speak to women who: (1) carry this mutation and have already sought proactive treatment or (2) carry this mutation and have chosen not to seek treatment currently for any reason (for example: lack of insurance coverage, financial concerns, other health issues, etc.)
The long-term implications of the court’s decision are important, particularly for younger women who will benefit from the expanded competition in the marketplace which will drive down costs and open up new research opportunities in the medical community.
Supreme Court unanimously ruled today that human genes cannot be patented.
What this means for us…
Scientists can now research the BRCA genes without the fear of getting sued by Myriad Genetics who holds the patent on the BRCA genes. Hopefully this research will open up the doors for a cure for all.
Now that Angelina Jolie and Brad Pitt have become the new spokespersons for the BRCA gene, I would imagine there are many more unanswered questions than ever before. I do not have breast cancer nor the BRCA gene, but I am writing because I am involved with an amazing group of women who do have this gene and felt with their collective experiences and unending research, would start a group (now 5 years) to answer your questions. previvorsandsurvivors.com was started by one of my closest friends, Tobey, who wanted nothing more than to help women who have had to make the biggest decisions of their lives.
Angelina has done wonders by “coming out” with her decision to surgically remove her breasts. But, many women will say that money was no object, she is already beautiful, she has children, she is married. All true and not such an easy decision for most women coping with this scary decision. Suppose you are in your 20′s or 30′s, 40′ and unmarried? Suppose you haven’t had children? How will this affect your body image for you and your partner or someone new in your life? How do you go immediately into menopause?
There are so many questions and I have seen my friend & her group answer every question with kindness and knowledge. It is wonderful that there is a group available for women to go to and not to feel embarrassed by these questions.
You can see from this how much help I have seen previvorsandsurvivors.com give from their hearts. I have nothing but respect for them and what they are doing . If you or someone you know needs help with making this decision or after making this decision, please contact Tobey & previvorsandsurvivors.com They are amazing!!