>> now from abc7, "beyond the headlines" with cheryl jennings. >> thanks so much for joining us. do you know whether or not you're at risk of getting cancer because of a genetic mutation? it's not something that a lot of us think about until we have a family member or a loved one who is diagnosed with cancer. the brca genetic mutation, also called the "braca" genetic mutation, can lead to breast or ovarian cancer, or perhaps other cancers. it is so dangerous that some people will take drastic surgical measures to prevent it. well, there is a major effort under way to get researchers to focus on brca genetic mutations and encourage people to get tested to find out who has the mutation in the family. and leading that effort is our first guest -- evan goldberg, a silicon valley tech leader, a father, and the founder of the brca foundation, which was recently launched. and it was launched with a whole bunch of money thanks to a successful career, so

congratulations on that. >> thank you. >> you have an incredible story about how you even began to think about this, so tell us about that. >> yeah, well, i was adopted, and when i was 35 -- so 15, 16 years ago -- i was contacted by my biological parents, who actually had stayed married. and one of the reasons that they contacted me was to give me this medical information. my mother had had breast cancer twice, and she found out that it was caused by the brca mutation, which meant that i had a 50% chance of inheriting that mutation. >> wow. and so when you heard that, what did you think? what did you do? >> well, you know, i knew that it most seriously affected women, and i had a daughter who was two, and that it would be something that potentially she would have to deal with later in life, but i assumed -- like silicon valley people, i was very optimistic. i figured they'd have this bug fixed in the version of humanity 25 years from now, so i didn't

really think that much of it at first. but later it became more significant. >> and then you decided to take some really drastic action yourself -- not surgically, but financially. >> right. so, i didn't even get tested for another 10 years, and then i found out i was positive. my daughter was older. i had a second daughter and a son, and i realized that this could really have a significant effect on my family, so it was personal, and as i thought about how i wanted to take some of the success i've had and use it philanthropically, this was sort of an obvious choice. >> and you and your wife both have cancer on both sides of the family? >> yeah, even in my adopted family and my wife's family, so we were already involved in cancer research. but to take some of the focus of my energies really towards hereditary cancers and brca cancers was a big decision. >> so, setting up the foundation -- that's a huge start-up venture, which you were skilled at, but it's not easy. and so you have a mission. you have several missions that you want to accomplish. >> right.

>> tell us about that. >> well, it's true that it's actually easy to give money away, but i had a partner -- someone that lived in town with me who was also brca-positive and had a family that was affected -- and he encouraged me that we should really build a community and collaborate with other people and other foundations and other researchers. and so that's what encouraged us to go to the next step and create the foundation, you know, the vision of which is eliminating the threat of brca cancers from individuals and families. >> but you have sort of a call to action. you have several things that you want to see happen. you want silicon valley to get involved. >> yeah, for sure, and that's one of the most exciting things about starting this foundation in the tech world. we're in an era where we have great tools to analyze big data. it's happening all the time. and as the landscape of cancer has changed, we're getting so much data that we can analyze. and so certainly looking at brca individuals and finding out how

they may differ and what their risks of cancer are by doing statistical analysis of large data sets is something that we're super excited about helping with, and silicon valley can really help. there's obviously a lot of expertise. >> okay, so that's a call to action right now. >> yeah, definitely. you know, if you're interested in looking at cancer from a data-analytics perspective, please come and talk to us, 'cause we can connect you with the researchers that need the help. >> you aren't just giving the money away. you're demanding accountability, so you've made donations to several prominent facilities. >> mm-hmm. yeah, we started with giving donations to harvard, stanford, and ucsf. and one of the things that was most important is to foster collaboration, and it's actually been great. i mean, these institutions are somewhat siloed, and we've been able to break through some of that. the researchers meet twice a year, and they are making sure that sort of all their ships are sailing in the same direction, they're not duplicating work, and they're using the successes from each institution to help really make sort of one plus one plus one equal five.

>> are you asking for other people to get tested? >> absolutely. you know, this is sort of one of the things that i care about when i look at the bigger picture, is how many people have not been tested and how many of them do have hereditary cancer mutation. and so we, as a foundation, have funded a family testing program in conjunction with color genomics where that test, which is already -- you know, it's been great that they've gotten the price down to $250 -- but if you're a first-degree relative of a person with a hereditary mutation, which case you typically have a 50% chance of having it, you can get the test for $50. >> which is so much cheaper than it was just a couple years ago -- in the thousands of dollars. >> yeah, it's two orders. i'm actually at 100 times cheaper than the tests were when i first learned that i might have the brca mutation. >> you have three kids... >> i do. >> ...and you haven't had them tested. >> no, kids should be able to be kids, and they assume they'll live forever, and that's how it should be.

and there's nothing really that you change in raising your kids. you try to raise them healthy. women, at age 25, will typically start to have different medical care if they're brca-positive, and so that, so to me, seems the right time that they have to start thinking about it. but not until then. >> okay, all right. let them have a happy childhood. >> exactly. >> all right, thank you so much for what you're doing. appreciate it. and, unfortunately, we are out of time for now. all right. stay right here. we're going to take a short break. when we come back, we're going to hear from a patient who took drastic measures when she learned her diagnosis. we'll be right back. ♪

>> welcome back to "beyond the headlines." we're continuing our discussion on the brca genetic mutation that can lead to cancer. here with me in the studio right now is a woman who learned she has the brca1 genetic defect or mutation. raleigh zwerin is a wife, a mother of two children, and a teacher. she took drastic measures to

head off cancer. raleigh, thank you for being here. your story is unbelievable... >> thank you for having me. >> ...because you have a sister, also, who is involved in this journey, so take me back to the beginning. >> so, my sister and i were -- we found out about this brca mutation completely by chance. >> there's a little joke that you have going with this, right? >> we do. we were both very healthy, and my sister was given a free genetic test by a friend, and she didn't really pay much attention to the results of that test until five years after she had taken the test when she went to have her dog dna-tested to find out what kind of dog she had. and it was when she looked at her dog's results that she was reminded of her own test and looked at the results then again, more thoroughly, of her own test and saw brca1 for the very first time. >> so she's saying that the dog made her do it, right? >> she said, "the dog saved us," right. >> the dog saved you. oh, my gosh. so when you learned that you both had the mutation, what did

you do? >> we didn't know about what brca was, other than really what we had heard from angelina jolie when she shared her story back in 2013. so it was when we first discovered this mutation that we really threw ourselves into research, and i read everything i could on the internet, we spoke to doctors, and it became clear very quickly that there were two options -- we could be screened closely, or we could have preventative surgeries to reduce our risk of cancer. >> and you were over 40, so after -- and you had children. >> so, we both have children. both of us have two children. we learned about this mutation when we were in our 40s. >> uh-huh. >> and i knew that the doctor said we have a 40% risk of getting ovarian cancer, a 76% or more risk over a lifetime of

getting breast cancer, and the screenings weren't necessarily going to be very effective. >> so all of that helped you make your decision. >> there was no -- we knew that there was no other option but to have surgery. the choice was very clear. >> and so we call it prophylactic surgery. >> correct. >> so, with the mastectomy and also ovaries... >> correct. >> ...and fallopian tubes removed, which means early menopause, that the women don't know how difficult that is. >> right. >> how was your family during all this? >> they were part of the reason that made this decision, i wouldn't say an easy one to make, but made the decision so clear, because they were incredible support. we both have amazing spouses and children and families who were all in favor of us going through this drastic surgery to take care of our health. >> and i know that you timed it so that each of you could take care of each other... >> right. >> ...which is so loving. >> we had four surgeries

altogether -- two each -- and we staggered them so that we could be there to take care of each other and our families could be there to take care of us, as well. >> wow. what a journey for both of you. and then, so that was just in, what, 2015, right? >> that was in -- our last surgery was in 2016 in march. >> in march. and then, you're doing okay, but something happened to your sister. >> one of the remarkable parts about this journey was going through these procedures with my sister, and we were in lockstep all the way through until this past february. she took a ca 125 test, which is a tumor-marker test that my doctor recommended that i take. and so i gave her that information, and so she took that test because of my doctor. and it was when she took that test that they found elevation in her tumor-marker numbers.

she had a ct scan, and they found several masses in her abdomen, and she's currently undergoing chemotherapy. she's doing really well. >> that's good to hear. >> yeah. >> so, you thought in your heart that you did everything right, and when you look back on it, you made the right decisions. >> there is no question we made the right decision. i know that this surgery helped extend my life, and i know that if my sister hadn't have been proactive about her own health, that her cancer might have been too advanced to treat. >> wow. and as far as having your kids tested and her children tested, what are your thoughts about that? >> we've been told by numerous doctors to wait and to let the children grow up and not until maybe my daughter was in her mid-20s and my son was maybe mid-30s or 40 before they're tested. >> well, i wish you and your family all the best. >> thank you so much. >> thank you for sharing your story with us today. >> thank you. >> all right, and we do have to

take a break. coming up next, meet an oncologist who tested positive for the brca gene mutation. her story, and find out who is most at risk of having the brca gene mutation and their options for treatment. stay with us. we'll be right back. ♪

♪ on the only bed that adjusts on both sides to ultiyour ideal comfortweek your sleep number setting. and snoring? does your bed do that? it's the final days of ultimate sleep number week. save 50% on the ultimate limited edition bed with adjustable comfort on both sides. ends monday. visit sleepnumber.com for a store near you. >> welcome back. we're talking about the brca, or "braca," gene mutation. with me right now in the studio is dr. pamela munster. she is the co-leader of the ucsf

helen diller comprehensive cancer center's center for brca research, and she's a practicing oncologist. you're also a mom, and you developed cancer. >> i developed an early form of cancer, and i didn't have a family history. and i don't come from a background where one would necessarily think of brca, but my cancer -- my ductal carcinoma in situ -- looked so unusual that i thought, "this looks more like a brca-related cancer," so i got myself tested. and, you know, i can really speak to the challenges and difficulties that people have to get tested and how much work we have to do to undo this. >> did you take any other measures when you learned? anything else that you had to do? >> yeah, i had what a lot of women with brca mutations go through -- i had bilateral mastectomies because of my diagnosis, and then i had prophylactic refractomy. however -- >> which means? explain that for the layperson, please. >> so, i had to take my ovaries

out at a time where i was still premenopausal with having ovaries that were actually functioning, which was not quite as easy as, like, a -- as i learned, you know, it's a lot easier to prescribe medical treatments than having them. >> of course. now, you mentioned that you weren't in the high-risk category, so who is at risk for having the gene mutations? >> you know, historically, we always thought the gene mutation is limited to a certain population, and the most commonly associated population would be the ashkenazi jewish families. but more and more we learn that that's actually not true, because there's many other folks have a brca mutation, and probably at very similar penetrations. so i think the testing needs to go way beyond a certain population, and i think pretty much anyone could be at risk. >> anyone can be at risk. >> anyone could be at risk. i had no family history. >> now, your center has a very specific mission, and it was -- you got a generous donation from evan goldberg's foundation, as

well as other people. what is the focus of the center, and how do you help people who think that they might be at risk? >> so, i like to look at brca as a problem in three segments. like, my father has pancreatic cancer, who needs treatment for metastatic brca-related cancer, so we know these treatments are very specific and very different -- probably more effective. my father's four years into his metastatic pancreatic cancer, which i'm very happy about, right? then for people at my level, we hope that we can do with prophylactic surgery. risk-reducing surgery can remove ovaries, the breast. we can do good screenings, solid screening -- say, for men, we can look at their prostate, their risk for pancreatic cancer. so we're hoping we can prevent cancer from happening. but my bigger hope is that i can tell my children if they test positive that they don't have to worry about brca-related cancer, that we can either prevent the mutation from being passed on

altogether, or that they don't have to do drastic surgeries. it is my pledge that my daughter will not have to do a bilateral mastectomy to not have a cancer. >> now, you did talk about this with your daughter. she can't help but hearing you, or going through with you what you went through. >> she is aware that probably before women are 30 or 35, they probably don't have to do anything. i really would like women to get through childbearing and young adolescence before doing drastic procedures. i think it's okay to know, but as i said, my pledge is -- and with the generous support of many of our supporters, including evan and the brca foundation -- that we really can eliminate this mutation from the gene pool and cancers associated with it. it's a tall order, i know. >> it is a tall order. do you have a time frame on that? i mean, it's -- >> my daughter's 13, so yes, i'm kind of like in a time pressure. >> right. clock is ticking for you. >> clock's ticking. >> for people who are worried, though, that this is just

hanging over their heads, what would you recommend? >> i think a lot of effort we are doing in the brca center's also, like, why is it that some people have a brca mutation and they don't have cancer? what is it that they do differently or have differently? so i think tapping into more of, like, are there environmental factors that are crucial? or we need to look at vaccination, exercise, diets, vaccination? there's so many things we can actually start researching on. and that's where we need all the support we can get, and that the support of the brca foundation and other foundations been like invaluable for us. >> well, i hope that we can also be a resource for you. thank you, doctor, for being here and for what you're doing. >> you're welcome, and i really want to put the word out -- this is not a disease of limited population. this can happen to anyone. >> thank you, doctor. >> thank you. >> all right, we will be back in just a moment. we will be back with an organization that has partnered with the brca foundation to offer brca gene testing at a very low cost. find out how it works.

>> welcome back. we're talking about the brca --

or "braca" -- genetic mutation and whether or not people should get tested for it. joining me right now is lauren ryan. she's a genetics counselor for color genomics. lauren, thank you for being here. >> thanks for having me. >> we have all kinds of fun things to look at here. this is the color test kit. and i'm gonna show the inside of that in just a moment. but what does this test do and what does it cost? >> the color test is a 30-gene test -- including brca1 and brca2 -- to help women and men understand their risk of developing hereditary cancer. and the cost of the test is $249, which is significantly lower than the cost of testing even just a few years ago. >> and i remember hearing it -- sometimes that ran into multiple thousands of dollars. >> that's correct. >> so, how are you able to make it so affordable? >> the color test combines a lot of software efficiencies. and by marrying 21st-century software with expertise in data science and medical genetics and design, we're able to offer the testing at a much lower cost.

>> and i know that the evans foundation is also partnering with you... >> that's right. >> ...to bring that cost down even significantly lower. >> exactly. we're so lucky to partner with the brca foundation to be able to offer testing to the people who are really at the highest risk -- people who have an immediate family member with a mutation already identified in one of these genes. they likely have a 50% chance of testing positive for that mutation. and so, with our partnership with the brca foundation, we're able to lower the cost even further, to only $50. >> at $50, that's probably within a lot of folks' reach. and then i just read something recently that perhaps several insurance companies will also consider paying for the cost. >> that's right. that's exactly right. so, we'll be partnering with insurance companies to help cover the cost of testing for other individuals or who may not even be able to afford $50. >> okay, so, i would like to take the test. >> great! >> and i'm gonna take the test. i'm not gonna -- it requires spitting. i'm not gonna do that on tv. but show me the -- all the tools here we've got. it's pretty easy, right?

>> absolutely. and it only takes a few minutes. so, inside the test is a small, plastic box that has a saliva tube inside. and it's got a funnel on the top. so, it looks like a large tube, but it's actually a very small amount of saliva. there's a false bottom in there. so, it's only one milliliter. and so, you wait 30 minutes after eating or drinking anything, even water, and then you just provide the saliva through the funnel up to the line where it says "fill." >> that's a lot of saliva. >> it's a very small amount, actually. if you look, it's just one milliliter. it's very small. and then you'll close the top, you'll hear a click, and some preservative fluid will fall through and mix with your saliva to keep it stable in transit. >> then you put it in a little bag. >> exactly. you put it in a little bag, pop it back inside the box. you can throw everything else away. and there's already a return-shipping label on the back of the box, so you just put it in your mailbox and it comes back to the lab. >> so, the scary thing would be -- for people who learn that they might text positive for a genetic mutation, how do you deliver that news, and what services do you offer to help them get through this? >> yeah. it's true that genetics testing is a very personal decision, and it often involves a lot of

emotional factors. and it's important to be responsible with the genetic information. so, included in the cost of the color test is a consultation with a genetic counselor -- myself or someone else on our team -- to help you understand the results of the testing and answer your questions, and also direct you towards resources in your local area to make sure that you know what your next steps are. >> is it a doctor or a genetics counselor? >> genetic counselor. >> and now, what -- is there such a thing as a false positive? >> the chances of a false positive are very small. it's industry standard to -- actually, if we find a positive result -- to send your dna for secondary confirmation using another type of genetic-testing technology to make sure that we've actually double-tested your sample and found the same result. and that really helps bring the risk of a false-positive result to a very low level. >> people sometimes feel that they're helpless in this situation, right? >> it's true. >> so, you can help them get through that. >> yeah, i think there's something about what we find in

our dna feels -- it's really not in our control any more than the color of our eyes or the color of our hair. but i actually see this information as very empowering. if you can learn your risk of developing cancer in the future, you can take action now to try to reduce those risks and increase the chances of early detection. and it can even be life-saving. >> lauren, thank you so much for all this help and information. i appreciate it. >> thank you. >> all right, and that's gonna do it for us. now, if you decide to get tested, please let us know. we have so much information to share with you. and, by the way, i'm gonna post my results on my facebook page. so, go to our website -- abc7news.com/community. we're also on facebook at abc7communityaffairs, as well as cheryljenningsabc7. and follow me on twitter @cherylabc7. thanks so much for joining us. have a great week. we'll see you next time. ♪ ♪

live where you live, this is abc7 news. a gusty, gray and soggy sunday. >> some areas could even see a thunderstorm. by the way, you'll find all this out when you take to the road today. >> we are on storm watch tonight, anticipating a second wave of wet weather to blow into the bay area. >> this was the drive on highway 101 in san rafael. the rain started this morning in the north bay.