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!!
Thank you for what you did today for the BRCA PREVIVOR community. When one is a symbol of beauty inside and out as well as a celebrity telling the world that you are no less a woman it is HUGE. You are an inspiration to the world and certainly people who are facing these difficult decisions. Wishing you and your family a lifetime of joy and happiness together. Be well.
March 6, 2013
BRCA testing is now clarified as a preventive service under the provisions of the Affordable Care Act. This clarification will take effect immediately for all non-grandfathered private insurance plans and will allow for BRACAnalysis® and BART™ testing to be completed as a “preventive service” with no patient cost sharing (including copays, deductibles, and coinsurance) when a patient is determined to be high risk by their healthcare provider because they have a “qualifying” family history.
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“Why would I want to know that I am going to get cancer?” she remembers thinking. Her mother died of the disease when Molenhouse was 22.
Her nurse explained there were benefits to knowing, even if the test came back positive. Molenhouse learned that having the mutation didn’t have to be a death sentence, but could be an empowering piece of knowledge.
“If the results do come back positive then I will have the edge,” Molenhouse said before receiving her results.
Molenhouse is one of more than 40 CNN iReporters who shared their experiences with testing for the BRCA gene mutation and the choices they were faced with as a result.
Thanks to advances in genetic testing, many women are finding out if they are predisposed to breast cancer and making life-altering decisions at young ages. While people with the gene mutation may never get cancer, carriers are at significantly higher risk of developing breast, ovarian and other cancers — and passing on the mutation to future generations.
Mutations in the breast and ovarian cancer susceptibility genes, known as BRCA1 and BRCA2, account for 5% to 10% of all breast cancers and one in seven ovarian cancer cases.
If the results of the BRCA gene test are positive, there are options. Some women will have preventive mastectomies, remove their ovaries, take anti-cancer drugs or change their lifestyles entirely before ever developing the disease. Whatever their choice, genetic testing can have a profound ripple effect throughout families.
A big decision
Testing positive for the BRCA gene wasn’t the hardest thing that Eryn Powell heard from her genetic counselor. It was hearing, “What’s your time line?” The genetic counselor meant her time line for getting married and having kids. This was all before Powell knew whether she had the gene. She says at that moment, it became real.
Women with the BRCA gene are at high risk for having aggressive types of breast and ovarian cancer. In order to prevent ovarian cancer, women are advised to have either a hysterectomy or oophorectomy (removal of the ovaries), both of which will eliminate all chances of having children biologically.
Powell broke down in tears. Here she was, 24 years old, needing to plan her life as it was just getting started.
After reading blogs, medical journals and speaking with doctors, she opted to have a preventive mastectomy to remove both breasts. Her gynecologist was very sympathetic to her situation and advised her to wait on the oophorectomy or hysterectomy because she is young and will most likely want children in her future.
As a 20-something in a serious relationship, one of her biggest concerns before her mastectomy was: Would her new breasts be cosmetically appealing? She didn’t want to look different from other women.
Her family was absolutely supportive of her decision, but some of her friends asked, “Why would you cut off a healthy part of your body?”
The answer was simple. Powell had seen the effects of cancer firsthand, watching her aunt die from the disease.
“If I have to cut off a part of my body so that my future husband and family won’t have to go through that, then I will cut off anything,” she says. “No questions asked.”
“Waking up from my mastectomy/reconstruction surgery, I felt pressure,” Amy Shainman remembers. “It goes from feeling like an elephant, to a rhinoceros, to a lion, to a cheetah, to a large dog. It then feels like you have a heavy log on top of you. Eventually the pressure turns into feeling like there is lap dog on your chest, then a small cat.”
Shainman says it took her about two weeks to feel somewhat normal after her surgery and six weeks for a full recovery.
As an outreach coordinator for the organization FORCE (Facing Our Risk of Cancer Empowered), Shainman provides resources for women who grapple with the tough decisions they are facing after finding out they are BRCA gene carriers.
Having traveled this path, she is very honest in telling women how the surgery will alter their bodies and change their life. She believes education is key among doctors and patients to prevent, treat and conquer cancer in BRCA gene carriers.
“Hereditary cancer needs to not only be on the radar of all women, men and families — but on doctors’ radar, no matter their specialty,” she says. “The medical community as a whole needs the training/education on hereditary cancer so they can look for hereditary cancer signs in their patients, ask their patients the right questions and then advise those patients that fit the criteria to get genetic counseling.
“People make hugely important health decisions based on this one test, so the pre-genetic test counseling and the post-genetic test counseling are essential.”
Shainman has a history of cancer in her family and knew she needed to be tested for the gene. Once the results came back positive, she did a lot of research and used the FORCE organization to help her make the decision.
She chose to have both a hysterectomy and mastectomy to avoid cancer. She believes having surgeries are the only “cure” for BRCA patients.
She says she could not live with the continual anxiety of not knowing what would show on her next mammogram or breast scan. She says having the surgery allows her to feel relieved.
“Every day when I see my children at the breakfast table and am able to make them breakfast and get them off to school … I am thankful and I know I made the right choice.”
A few months after Cara Scharf graduated from college, her dad encouraged her to get tested for the BRCA mutation. Her mother died of breast cancer when she was 3, and her grandmother died of ovarian cancer before she was born.
When she tested positive for the gene, surgery seemed like a drastic move. She was 22. She decided it was best to undergo regular screenings and MRI scans to detect any abnormalities early.
“I think some people don’t realize how serious of a surgery it is,” Scharf says. “It is an amputation. Your body will never look the same and there is a high risk of complications. I wanted to keep my body the way it was and I was convinced that I had time to make my decision.”
Three years later, her scans showed breast cancer.
The doctors were able to catch the disease in the early stages because she had been so vigilant about her screenings. But having breast cancer and undergoing chemotherapy at 25 was rough. Her brother got married that year, and she had to wear a wig to the wedding.
She, too, decided to have a double mastectomy to prevent the cancer from returning. She still lives in fear of a relapse.
“Young breast cancer survivors have a whole set of issues to deal with that are different from breast cancer survivors who are older,” she says. “I’m not saying the following considerations are exclusive to young breast cancer survivors, but they are experienced differently: Fertility, relationships, long-term survivorship, body image, dealing with friends who don’t understand.”
She says she now finds herself asking a lot of existential questions like, “Why am I here?” and “What’s my purpose?”
She doesn’t blame herself for not having surgery when she was younger. She has joined a couple of young breast cancer survivor groups and says they have helped her through the process. Her focus now is how she can live out her dreams.
Lisa Fassnacht watched her sister, Christy, die from breast cancer when her sister was 34 years old. While Christy was fighting for her life, she begged her sister to get tested for the gene mutation and have the necessary surgeries so Lisa’s children wouldn’t have to watch their aunt battle a debilitating disease.
“My family, friends, sister and doctors all wanted me to have the surgeries right away,” Fassnacht said. “I was very reluctant. I suppose I was still in a bit of denial. I was a single parent, working full time as a nurse, and spending my weekends driving four hours to help care for my sister. I didn’t have time to think about me.”
She eventually went for the test, convinced that the results would be negative.
After hearing the results were positive, she remembers feeling shocked. Since then she has undergone a prophylactic bilateral mastectomy and she is scheduled to undergo a hysterectomy later this month.
“It has been very difficult. Not only did I have to lose my breasts that make me look like a woman, but I also will soon lose my ovaries that make me a woman. I remember telling my sister ‘Oh, they are just breasts. The doctors will give you new and improved ones when you are all done.’ Now I know why that was the wrong thing to say,” she says.
At the time of her mastectomy, Lisa was newly engaged (she is now married) and worried that cutting off her breasts and having a hysterectomy would change the dynamic of their relationship emotionally, physically and sexually. She says her husband, Dave Fassnacht, was — and is — absolutely supportive.
“She is my hero for making the very difficult decision to have these surgeries, while 100% healthy, to prevent cancer from taking a wonderful wife and mother from my life and the lives of her children,” her husband says. “We will always be grateful for what she is doing.”
Tobey Young, 54, believes you have to be positive when going through this journey. While there will be hiccups, staying positive is key for speeding along the recovery process, she says — allowing you to be here for your childrens’ weddings, the next birthday and your next anniversary.
It has been five years since Young’s last surgery and she says she feels absolutely fabulous. Young has never had cancer and therefore identifies with the term “previvor.” The term has been adopted by many carriers who have taken preventive measures — surgeries, drugs or vigilant screenings — to dramatically reduce their risks of developing the disease.
In 2007, Young’s physician told her she was positive for the BRCA gene. The first thing she remembers saying was, “Cut off my boobs — what, are you crazy?” She was aware of her family’s history of cancer and was already vigilant in testing for breast cancer through screenings and mammograms.
But, she says, after being in denial for about 20 minutes, she made the decision to have her breasts, ovaries and fallopian tubes removed.
“I was a ticking time bomb with an 87% chance of getting breast cancer and a 44% (chance) of ovarian cancer,” she says. “(I) didn’t like the odds.”
She still gets screenings, although she has been told the chances of her developing cancer are slim. She no longer needs mammograms and describes her breasts as beautiful. She is also no longer in fear of developing cancer and is very involved with the organization she founded after being tested, previvorsandsurvivors.com.
She created the organization to offer support to women who are BRCA gene carriers.
“While I was going through my previvor experience, I was invited to join a group of women breast cancer survivors,” Young said. “I can certainly empathize with the breast cancer community, but those of us who have never heard the words ‘You have breast cancer’ are not the same.”
It is Breast Cancer Awareness month!
previvorsandsurvivors.com wants to support all the breast cancer previvors and survivors out there.
Have you had your annual mammogram? Mammography/Sonogram screening can detect breast cancer before you feel a lump.
- Lump in the breast or armpit area.
- Rash on the breast. Inflammatory breast cancer can show up as a rash.
- Nipple inversion. Nipple discharge. Nipple pain.
- Texture, size, color of breast monthly for any changes.
Please ask your doctor or nurse to show you how to do a monthly breast exam the same time every month so that you are familiar with your body and can recognize any changes.
Be well you all……
This is National HBOC week (hereditary breast & ovarian cancer) & Wednesday, September 26, 2012 is National Previvor Day. Wednesday is also Yom Kippur or the Jewish Day of Atonement the holiest and most solemn day of the year. According to tradition, each person’s fate is sealed for the year on this date. So, I’d like to wish everyone HEALTH, HAPPINESS, PEACE & PROSPERITY for the coming year.
The mission of our group is to provide the support, skills and resources to all women in relation to the BRCA gene and hereditary breast and ovarian cancer. It’s a place where ordinary people help ordinary people.
Having a group dedicated to spreading the word about previvors and what it’s all about and can save a life. There are tests out there to check whether or not you carry the BRCA gene that makes your family so predisposed to breast or ovarian cancer and there are prophylactic measures you can take to avoid cancer. Get your annual breast and gynecological exams. You can read about it at our blog: www.previvorsandsurvivors.com & our forum has plenty of good information too: www.previvorsandsurvivors.com/forum/. That’s what National Previvor Day is all about- getting the word out and saving lives.
Be well everyone… Happy & Healthy New Year wishes… and HAPPY PREVIVOR DAY.
RDH magazine is a trade magazine for Registered Dental Hygienists. This month in their April 2012 (volume-32/ issue 4) issue, an article was written by: Lory Laughter, RDH, BS
Author Lori Laughter titled her article: Life outside of hygiene!
The article can be found by following this link:
The article hightlights a few dental hygienists who have lives “outside” the hygiene world. The article basically makes you think about how people assume and define you by what they see in front of them. We – hygienists think about things other than teeth!
I am honored to have been one of the hygienists RDH Magazine selected to write about and I wanted to share the particular paragraph that was written about me and our group previvorsandsurvivors.com with you all.
I am directly quoting from the article:
“Tobey, RDH, from Oceanside, NY, (who does not use her last name on the website) introduced me to
Reading her experience on the “about” page was a moving and educational experience. Until visiting the site, I had never heard of a previvor. Spending some time here learning about the BRCA gene’s relationship to breast and ovarian cancers will help all women make informed decisions about their own health care regarding prevention and diagnostic testing. Previvors and Survivors is a nonprofit organization that provides support, skills, and resources for women who are dealing with the difficult decisions surrounding BRCA, hereditary breast cancer, and ovarian cancer. The pages are filled with critical information, touching and inspiring stories, and ways each of us can become involved in helping affected women and families. Please do not leave the site without reading Tobey’s story and sharing it with at least one other woman. It is information we cannot afford to overlook.”
Follow the link above to read about the other amazing hygienists and I agree with Lori Laughter – next time you meet someone in business, ask them about their life. You might be pleasantly surprised by what you find out.
Thank you again RDH magazine & Lori Laughter.
The American Medical Association today reported that 100,000 women were followed in a study over 28 years and the conclusion is that having less than one drink a day (even a glass of wine) could increase your risk of breast cancer.
Three to six glasses of alcohol/week increases your risk of breast cancer by 15% and two glasses/day increases your risk to 51%.
It was further reported that 11% of breast cancer is related to alcohol consumption because alcohol increases levels of estrogen which fuels tumor creation and growth.