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My Mom is BRCA1 positive and a FOUR time cancer survivor. My sister and I are BRCA1 positive. We both have had life saving prophylactic mastectomies.
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This is an article my family did for a local newpaper. It shows my mom, sister and I's journey with cancer and the BRCA1 gene.
Family of Fighters: Sisters take big steps to prevent cancer
Sisters Britta Van Vliet and Mallory Iltis knew all the numbers and statistics.
They'd consulted with doctors and counselors. They'd talked with partners and friends.
But when it came to the decision to have preventive double mastectomies this spring to drastically reduce their risk of breast cancer, all the young women needed to do was look to their mother.
"I think watching my mom and knowing her story and then being given this knowledge, it was power," said Turlock resident Van Vliet. "I said if I can block this cancer out, I am going to do it. It just made sense."
Their mother, Turlock resident Sonja Iltis, is a four- time cancer survivor — the first two times from breast cancer and the next two times from ovarian cancer.
She completed her final treatment last week at Emanuel Cancer Center in Turlock.
Now 57, Sonja fought her other battles with cancer at ages 24, 38 and 55. With her most recent diagnosis in February, she was going through chemotherapy and radiation treatment as her daughters were going through preventive surgical treatment.
The sisters join a growing group of women who call themselves "previvors," people who have taken action to fight their genetic predisposition to cancer.
The family shared its story of survival and prevention for the first time at the 15th annual Emanuel Medical Center women's cancer awareness event Tuesday night. E News anchor and breast cancer survivor Giuliana Rancic served as keynote speaker in front of a sold-out crowd of more than 1,000.
For Mallory, 22, and Britta, 28, the choice to have double mastectomies without being diagnosed with breast cancer came from genetic testing and family experience. The sisters tested for the breast cancer-associated gene BRCA1 after their mom tested positive for it in 2010.
The results showed they both had an 87 percent risk of developing breast cancer and a 44 percent chance of ovarian cancer during their lifetimes.
The family discussed the results over the 2010 Christmas holidays, and despite the radical nature of the treatment, both women said they felt certain about undergoing the prophylactic procedure.
"We chose life over vanity and fear," said Mallory, who lives in Santa Barbara. "I had a lot of people ask why in the world I would do this. They don't understand or get it. But who cares? I saved my life."
Genes indicate danger
Breast cancer's hereditary link was made in the early 1990s, when the first gene associated with breast cancer, BRCA1 (short for Breast Cancer Susceptibility Gene 1), was discovered. Shortly after, another gene connected with the disease, BRCA2, was found. Women's chances of developing breast and ovarian cancer at a young age greatly increase if they inherit the gene mutation.
Doctors often recommend that women with family histories of breast and ovarian cancer get screened for the gene. According to the National Cancer Institute, women without the gene have a 12 percent lifetime risk of developing breast cancer, compared to an average 60 percent risk for those with BRCA1 or BRCA2.
In Britta's and Mallory's cases, their tests showed they had an almost 90 percent chance of developing breast cancer. Doctors laid out their options, ranging from intensive screening — having mammograms and MRIs every six months — to double mastectomies. But only the latter would drop their risk of breast cancer to less than 1 percent.
Still, as stark as the statistics were, there were real considerations for both sisters to having their breasts removed. Britta, a hairstylist who soon will open her first salon in Turlock, is married and hopes to have children. Mallory works as a nanny and waitress in Santa Barbara.
But both women said the example set by their mother and father, who have been married for 35 years, helped make the decision easy. Sonja had a mastectomy for each of her bouts of breast cancer and later underwent reconstructive surgery. Her husband, Michael Iltis, is the vice president for professional services at Emanuel Medical Center.
"I look at my dad and see how much he loves my mom," Mallory said. "And I look at my brother-in-law and see how much he loves my sister. It gave me peace to go through with it."
In it together
Just as they received their test results together, the sisters had their surgeries together. After consulting doctors at Emanuel Cancer Center, they had their mastectomies on the same day in the same operating room, one after the other, at Stanford Hospital in May.
It was the first time Stanford doctors had performed the surgeries on the same day, and on sisters. Mallory, at 22, also was their youngest double-mastectomy patient.
The surgeries lasted about five hours each, and the sisters spent three days recovering in the hospital. During their surgeries, they started the reconstructive process. That involves a period of slowly stretching the remaining skin and muscle through a saline expander over several months.
The women have opted to have silicone implants and will have those procedures together in January. Their surgeries will involve reconstructing the nipples and tattooing on areolas.
Sonja said she's proud of her daughters for making the decision, and hopes their courage and strength inspire others to have testing done.
"It's an education every time these girls open their mouths," Sonja said. "We're just a normal family. We just happen to have gone through all these things. So it's a waste if we don't share this story. We want to open minds and help people get the information and knowledge. We did it this way, others can do it another way. But do something."
Down the road, both sisters will have to make decisions about preventive ovarian cancer treatments. Those could range from having their eggs frozen and removing their fallopian tubes to having a hysterectomy, as their mother has done.
Whatever they decide, the sisters said they have their mother to look to for inspiration and support.
"My mom, what a warrior she is," Britta said. "She has beat cancer four times. She's a superwoman. I want people to see what she's done. And see from us that it's not as scary and bad as it seems."
Read more here: http://www.modbee.com/2012/10/16/2416883/family-of-fighters-sisters-take.html#storylink=cpy
Honestly, the hardest part has been dealing with peoples reactions and thoughtless comments. Most people are not educated about the BRCA1 gene. I am so thankful there is so much more in the media so people are able to understand why I made the decisions I made.
I would not change a thing about my journey. I have learned so very much. I have often said...if in the future...if something changes about our knowledge about the BRCA1 gene...if my mastectomy did not have to happen...if there is some magic cure in a couple months...I will NEVER regret my decision. I made it because of the knowledge I had gained, the research I had done. I made it because it was right for that moment. It was right for me.
The second I found out I had a BRCA1 mutation I googled it. FORCE was the first thing to come up. It has helped me research the gene. It has helped to connect me with others and read others stories and journey's. It has been a great support. It has also kept me up to date with what is new and changing. I am forever grateful to the FORCE community. It has been a priceless goal.
To my the BRCA community I say...DO NOT LOSE HOPE! Whatever your battle or journey is DO NOT LOSE HOPE! I encourage women to educate yourself, seek counsel, talk to your loved ones. Chose what is right for you! Do not go down a path because you think it's what everyone would want you to do. If that means heavy screening...do that! If that means a surgical route...do that! If it means sharing our story with others...do that! Do what is right for you!