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Kara DioGuardi: How My Cancer Gene Led Me to Surrogacy

04/30/2013 at 04:00 PM ET

When hit songwriter and former American Idol judge Kara DioGuardi and husband Mike McCuddy welcomed son Greyson James Carroll via gestational surrogate in January, it was a dream come true for the couple following five years of heartbreaking fertility issues.

But that’s only part of her story.

Two years ago, the music publisher learned she was a carrier for the BRCA2 gene mutation, which is linked to hereditary breast and ovarian cancer.

Then last December, after consulting with her doctor and “mentally preparing myself for the worst-case scenario,” explains DioGuardi, she underwent surgery to remove her uterus, ovaries and fallopian tubes — a move medical experts say greatly reduces her chances of developing these cancers in the future.

Now, in hopes of educating others, DioGuardi, 42, is opening up exclusively to PEOPLE about her BRCA2 diagnosis, why she chose surgery — and life as a mom to 3-month-old Greyson.

Kara DioGuardi BRCA2 Cancer Gene Surrogacy
Stephen J. Finfer

PEOPLE: What’s been happening with your health?

Kara: In December 2011 I found out I had a BRCA2 gene mutation, which my doctor said meant my chances of developing breast cancer over my lifetime were as high as 80 percent, and up to 30 percent for ovarian cancer. My grandmother had breast cancer, and my mother [passed away after she] was diagnosed with ovarian cancer at 50.

PEOPLE: How did you find out you were a carrier?

Kara: It was by chance. I was in New York doing Chicago [on Broadway] and I was staying at my aunt’s, puttering around, getting ready for the show. I never watch daytime television on a weekend, but for some reason, I turned on the TV and there was this journalist, Stacey Sager [at WABC-TV New York], talking about how people in her family had breast and ovarian cancer, how she’d had breast cancer, and had a genetic test. And then I started paying attention.

I’d never heard of the BRCA gene or anything you could do to reduce your chances of getting cancer. Once I started listening, I thought, “This is something I definitely need to learn more about.” So I called my doctor and when I got back to L.A., I had the test.

PEOPLE: What happened when you got the results?

Kara: The first thing that went through my mind was, “I bet you my mother had this.” And then I thought, “Wow. If she had known, it could have been a different story for her.” Then I thought about how lucky I was to have the knowledge, and that led me to “What can I do to diminish my chances?”

It completely changed my life because it made me have to think about my mortality a lot earlier. It stopped me dead in my tracks and made me prioritize my health. I had to think about it in conjunction with the fact that I was trying to have a baby. I knew I was at an increased risk for cancer, and it’s bringing me back to seeing what my mother went through and how hard that was on me at a young age, and how I don’t want to put my child in the same predicament if there’s some way I can stop that from happening. It made me approach it like it was something I had to deal with right away so I could figure out what my options were.

PEOPLE: So what did you do next?

Kara: Because I’d been in this high-profile position with Idol, organizations had reached out to me when they found out my mom had ovarian cancer, like the David Barton Gym, which does an event every September to raise money for ovarian cancer research (Barton’s sister died of the disease). And my best friend Suzie had a friend who had ovarian cancer; they later put me in touch with The Clearity Foundation.

I’d done the Run For Her race that raised money for the Women’s Cancer Program at Cedars-Sinai, where my doctor Beth Karlan is. There was all this synchronicity. Because I was involved in some of these charitable endeavors, when the time came that I needed experts — The Basser Research Center for BRCA at the University of Pennsylvania is also great — I could ask them for information and resources. I was very lucky.

PEOPLE: When you got your BRCA2 gene diagnosis, you were also undergoing fertility treatments. How did that affect you?

Kara: I started trying to get pregnant at 38. I did a lot of things: I had surgery for endometriosis. I had polyps removed. When I was on Idol I actually got pregnant, then miscarried. We tried IVF.

My doctor told me [prophylactic surgery] could reduce my chances of getting cancer by a significant amount. (Note: According to medical experts, most BRCA1 and BRCA2 carriers are strongly urged to consider ovary and fallopian tube removal before or around age 40 as a way to decrease breast and ovarian cancer risk.)

When I found out I had the BRCA2 mutation, a timeline came into play: At first I thought, “Well, I’m not going to do the surgery right now. I’m going to do one more round and see if I get pregnant.” And I didn’t. Then I realized that I could go through this, keep doing it and doing it, and pushing my luck. But now I know I have the BRCA2 gene. I’m putting chemicals in my body. I am prolonging it. I’m getting older. And I didn’t know if I could even have a baby at the end of it. So I took a calculated risk.

PEOPLE: What about your hopes to have a baby?

Kara: We’d hired an adoption attorney, we had the pictures, the book, had it all ready to go. Then … I knew this woman, a friend, and on a whim I asked somebody to bring [gestational surrogacy] up and get her thoughts on it and she seemed open to it. She came over with her husband, talked it through, and we negotiated it together.

Over the course of three years, [my husband and I] had done seven embryo transfers into me. The eighth was transferred into our surrogate and it took! When I had the surgery, it was helpful to know that this amazing woman was carrying our child and I was taking care of things to ensure I’d be around to see our son grow up.

PEOPLE: What happens with your health from here?

Kara: I’ll have to be evaluated every six months. I still have my natural breasts but I would consider having a prophylactic mastectomy [if my doctor recommends it].

PEOPLE: How do you feel now? Any regrets?

Kara: I feel that if this had to happen to anyone, I’m glad it happened to me because I had the resources. I was very lucky — I made a lot of money doing what I love.

I have absolutely no regrets because now I feel empowered in my body. I feel like I took back some of the fear, took back control of my life and hopefully enabled my child not to have to go through watching his mother in a chair hooked up to chemotherapy. I think that when it comes to your health, you have to look at it like, “Not only does this affect me, it affects everyone around me — my kid, my husband, my friends.” And if there’s a way to possibility reduce it, it’s kind of a no-brainer.

I felt it was my obligation to do something about it, kind of to honor my mother in that way. What would a mother want for her daughter? To take the test and take it seriously. And live — live the life she couldn’t live.

PEOPLE: How do you feel post-surgery?

Kara: My brother asked me, “Does removing your uterus and ovaries make you feel weird about being a woman?” And it did make me sad — the finality of knowing I’d never be able to feel a life inside of me. But I came to terms with it by looking at all the things I did have, and being thankful for those. Listen, everybody in life has things that don’t work out for them. But look at all of the wonderful things that did work out for me — I concentrate on that.

PEOPLE: How did your health and fertility struggles affect your marriage to Mike, 38, a teacher-turned-contractor?

Kara: It definitely made us stronger. His first concern was always me. I couldn’t have asked for a better husband. And I wouldn’t trade it happening any other way because I got to experience my dream. My 20s were about taking care of my mother. My 30s were about me, my career and becoming a successful songwriter and publisher and making money that has enabled me now to have an incredible life where I got to marry the guy that I wanted to marry. Unfortunately that timeline put me at risk for fertility issues because I was older. But I wouldn’t change it because I wouldn’t have my husband.

That journalist on the news that day in New York, Stacey Sager, may have saved my life by telling her story. If I can talk about this and there are even just five people out there who read it and get tested, it’s worth it. For me, if I can help somebody else, it makes having the gene a lot easier to deal with.

PEOPLE: When you’re holding your son now, what do you think about?

Kara: I always think about the amazing surrogate, how she gave me this precious gift. It’s kind of overwhelming sometimes, that someone would do that for me. And I think how I would go through it all again — the five years of infertility, the shots, the operations, the whole drama — just for him. He is perfect.

PEOPLE: Tell us about Greyson! What’s he like?

Kara: He’s a chunky monkey! He’s 17 pounds now. He’ll sleep for about six hours a stretch at night. He’s a really good baby — very happy except when he’s hungry or has gas, which is when I have an insight into his vocal pipes, which are extraordinary. Otherwise, he’s calm and is a total sweetheart. Sometimes he’ll scream because he doesn’t like his car seat, but when I turn pop radio on, as soon as he hears the bass, he stops. He is so my baby!

PEOPLE: How’s life in Maine?

Kara: I love it. There’s this great group of women here — the mommies of Maine! Because of my husband being from here, I get this other side of life. The music industry is a tough industry; you can lose a bit of your sensitivity. But I feel that I gained a lot of my sensitivity back through my relationship with him. I really believe I’ll be a better mother because of him.

Mike has a [16-year-old] daughter, Elora, and she has a great mom. I understand that Mike had this life before me, so we decided to base ourselves in Maine. It’s important — a daughter needs her dad. Actually my stepdaughter, husband and I did Greyson’s nursery together. At first I said I wasn’t going to do all the cheesy baby stuff. Yeah, right! That went right out the window. I got these animal decals and Elora says, “You sit down, I’ll handle this.” She’s been a big help.

PEOPLE: How are you adjusting to motherhood and balancing it with your music career?

Kara: I just came back from Nashville, where I was working with Jana Kramer and Raelynn, who was on The Voice. That was my first trip away from him and that was pretty hard. When you have a kid at home, you really knock out work in a way where you don’t waste time. I was all work, no play; but the sessions were still really fun.

Next I’m taking him to Washington, D.C., which will be the 15th state he’s been in — we drove across the country [from L.A. to Maine] in a minivan after he was born. His favorite rocking chair is the car. But I’ve never been one of those parents who’s like, “He won’t sleep — I’ll put him in the car!” If I were to drive in the middle of the night, I’d crash the car — I’m so tired. I’m barely awake!

PEOPLE: What’s your favorite time of day with him?

Kara: The morning for sure. It’s the best. He wakes up in a great mood, smiling. We have a routine before my husband goes to work: baby massage, we do a book, some tummy time, then depending on how ripe he is, we do a bath. We just spend that time together.

PEOPLE: Is he growing into his name?

Kara: It’s funny — the name Greyson is very gentile, erudite, restrained. He isn’t reserved at all. He’s so big, sometimes he tips over, it’s unbelievable, you can’t keep him down. He’s constantly belching. I feel like sometimes I’m living with a college kid in a fraternity!

Part of why we named our baby before he was born was so the surrogate and I could refer to him as somebody, so we named him, talked about him as Greyson. But sometimes you have to see their face to know, “Okay, that’s the name.” After Chunky Monkey, we’ll probably call him Grey.

I think we gave him some options: There’s his full name — Greyson James Carroll McCuddy — which works if he’s a writer or author. And if he’s a rock star, he can be Grey James. Right now he’s a rocker: He’s loving the music, moving around, he’s not graceful, he wants to raise some hell. And he loves hip hop, so maybe his name should be Grey-J!

For more on DioGuardi’s health journey and her life as a mom, pick up the current issue of PEOPLE, on newsstands now.

– Marisa Laudadio

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Showing 64 comments

ok on

I had forgotten about the cancer and the new baby.

I love this picture so reflective of new parenthood exhausted but happy.

Congrats and wishing them a happy and healthy future.

Marie on

Awe nice story. Cute baby!

Marie on

Nice story and cute baby!

lou on

I loved Kara on Idol!!

I’m so glad she was able to have her son, her health and happiness.

She seems like such a down to Earth Mom!

All the best to you and your family!!

TRaceyT on

On one hand I am happy for her. On the other, why pass your crappy genes, for your child to have to come to terms with some day too? I found out I have a condition after I had my first child. She will be my only and I hope she will not suffer the way I have.

Linda on

She seems incredibly down to earth and relatable. I’m sure there are so many women who will benefit from the knowledge and outlook she has.

Bette on

Really happy for Kara, very nice post.

Judy on

For woman with a history of breast or ovarian cancer, please visit http://www.facingourrisk.org for support and information.

Anonymous on

Love this story! Very strong woman! I’m 33 years old, lost my mother last year to ovarian cancer also. Through my mother’s diagnosis, I was able to find out that I also am BRCA2 positive. I’ve had my ovaries and fallopian tubes removed as well as a double mastectomy! Best decision of my life…

Shelby on

I commend her for doing making the hard choice to do this. What a great story. I have been told numerous times by my doctors to have the test done due to my family history, but unfortunately mine, as well as many other insurance policies do not cover the test and it is expensive. Hopefully, with the help of more celebrities like Kara, the message can get out there and more avenues for an affordable way to get the test can be offered. Think of how many lives can be potentially saved.

Anonymous on

Inspirational! I wish I could talk to her about this. I’m not trying to have a baby, but I am going thru the process of getting my genes tested. I too lost my mother and took care of her in my 20′s, I also my grandmother to this vicious disease.
Much love from Cleveland, Ohio! <3

hbm on

@TRaceyT why are you being a debby downer I’m sorry to here you have a bad gene. But kara is trying to enpower women and that’s not creepy plus she had a son so he will not have what she has.

Meena on

Sounds like a wonderfully grounded person living a good life. Congratulations!

Meena on

I really appreciate that she seems to understand the importance of embracing her stepdaughter as well.

Pam on

It’s a boy, they don’t have ovaries and they most likely won’t get breast cancer.

Pam on

What a nice lady. I’m so glad she got her baby.

kira on

to those who say why pass on your genes – because medical advances in the future far outweigh the heartache of never becoming a mother in the first place. my only wish would have been for her to have carried her own child. kudos to you both – i hope maybe there’s another embryo waiting, if not – god bless and enjoy greyson and your extended family.

Diana on

Apparently your ‘condition’ is bitchiness. We are all glad you won’t be passing on any more of YOUR crappy genes.

Tee Tee on

Wow, what an interesting interview to read!

Megan on

What great things she said about her stepdaughter and the stepdaughter’s mother. It is great to finally see a family be mature (at least in the press), as opposed to LeAnne Rimes and that wacky bunch.

Tania on

Congrats to her on her beautiful family and may she have continued good health!

Milky on

Men can still get breast cancer as they have a little breast tissue although its rare, plus he could be a carrier and put his own children at risk. I wonder if they did any genetic testing on the embryo to rule it out before implanting?

Cip on

beautiful

Anonymous on

I think she’s lucky the baby wasn’t a girl, because the horrible legacy won’t go forward. Phew!

By the way, people often say “He’s such a good baby!” but that implies that there are “bad babies,” which seems sad to me. A baby who cries a lot and doesn’t sleep well doesn’t mean to be an “ungood” baby. ;-(

Alissa on

Lovely article. My only question is about her concern for possibly passing the gene on to her child. She didn’t mention it and did have her genetic offspring via a surrogate instead of adopting or using another embryo. She was so open about everything else, I would’ve liked to have heard her thoughts on and the data surrounding this concern. Congrats to them all and I hope she has a lifetime filled with happiness and enjoyment.

Jill B on

I would love to know why she chose a hysterectomy/oophorectomy when there was only a 30% chance of ovarian cancer over mastectomy when there is an 80% chance of breast cancer. Doesn’t seem like the odds are correct or something….

Tina Edwards on

I had a prophylactic mastectomy and hysterectomy to reduce my odds of getting cancer. Best decision I ever made! Congratulations on your baby!!

TRaceyT on

Diana, do you think you come off pleasant? LOL POT MEET KETTLE! Empathy towards suffering, is not bitchyness, hon.

Colleen on

I understand the pros and cons but a rush to judgment and you could possibly miss out on lifes surprises.. I had a precancerous (progressive) since i was 13 and never knew it til after my 3 children were born …my point is..If I had known, I dont want to think about whether I “would have or wouldn’t have.” I am glad I waited..I did have the necessary surgery uterus and ovaries when i was 29 caught it just in time! Thank god… To each his or her own i guess.

sky on

I did not buy into the genetic testing. maybe you will develop something, maybe not. why live your life in fear when other things will probably cause your death.

Marge on

I used to dislike her but after reading this article I really respect and like her. What an amazing store. God bless her and her family!

Anonymous on

Brca2 can lead to breast cancer in men. The test for both brca1 and brca2 is now covered under Obamacare in certain conditions (I believe if close relatives have had cancer). You can look up the press release in early March by Myriad (the company who does the testing).

Mimi on

As someone who had stage 4 cancer at the age of 11 (and lived to tell the tale) I find it a bit offensive when someone acts like having a genetic predisposition to cancer means they have or will definitely have cancer. Until you’re bald, puking your guts up from chemo and have had two organs removed, it’s not critical.

Vee on

Great article. Sending my best to Kara and her family. :)

Anonymous on

sky- Didn’t you read the article? She had relatives that had breast cancer (her grandmother) and ovarian cancer (her mother), so she probably would have worried about contracting those diseases even if she hadn’t found out about the gene and taken the test.

And thanks to the preventative measures she took, she does not have to live in fear! :)

All of that being said, I don’t believe in testing for everything under the sun, especially diseases and conditions that there is virtually no way to prevent (such as Alzhemier’s Disease).

But I DO believe in genetic testing for cancer and other things you can take to prevent (if you have a family history of the disease or another valid reason to take the test, of course!)!

Marly on

Wonderful that another someone with a high public profile, like Christina Applegate who is BRCA1+, is bringing forward this important awareness about hereditary breast and ovarian cancer. I’m BRCA2+ as well. The reason it’s a good idea to have the ovaries removed despite the lowered risk is because most female carriers are hormone receptor positive, meaning the origin of their cancer is via hormones in the ovaries, as was my case. Although I had breast cancer (15 years ago, now) most of familial cancers were ovarian, including a paternal grandmother passed at 34 from it and an aunt who was diagnosed at 36. Prevention is a great part of the treatment and along with prophylactic surgery, nutrition and exercise are key. A great BRCA support network exists, as previously mentioned by another postee, at http://www.facingourrisk.org.

Alissa on

After reading some of these comments, I have been enlightened. I was in no way saying she was wrong to have her child, I just wanted to hear her specific reasons since I felt she probably had some good points. Also I was unaware of the extent of all the testing and prevention that is possible when it comes to cancer. Thankfully I don’t have any family members who have had cancer, but I don’t want to be ignorant about it even though it hasn’t directly touched my life. Thanks to everyone who shared their experiences here and I hope you all have long, healthy lives.

CherylS on

So glad this article was written. I just was offered to take this test last week because ovarian cancer is in my family. I took the test and now am waiting. I don’t have the results yet but it’s nice to see and hear of this story to comfort the things that are going through my head if this is positive. So happy to hear of the outcome and how you moved on after surgery and still continued to pursue being a mom and make it work. Happy for you! Thanks for sharing your story.

H on

Actually hbm, men have a risk of male breast , prostrate and pancreas cancer.

Julie on

I think it is great of Kara to share her story and the actions she is taking to protect herself.

As someone who learned I am a BRAC1 carrier after my younger sister was diagnosed with breast cancer at age 31 (she passed away at age 33), I chose to have a hysterectomy as well. Though the odds are lower of getting ovarian cancer, it is harder to detect, thus it is a higher likelihood of it being caught at an advanced stage. I get a mammogram and MRI every year (6 months apart), but I will consider a prophylactic mastectomy as well. You just have to do what you have to do to stay around as long as possible…..

The best to Kara and her family.

lisa on

Unfortunately the children have a 50% chance of the mutation Diana :-(

lisa on

I am also BRCA2. BSO in 2 weeks!!!! Mom had Bso and double mastectomy after discovering breast cancer, cousin BSO discovered PFTC has had 2 rounds chemo…..But we are all so blessed we knew!!!!

lisa on

It is a law now that passed on 3/6/13, Shelby. They have to pay it. All you need is a letter of medical necessity!!!! ( actually you shouldn’t need it but it helps)

lisa on

Unfortunately the BRCA2 gene mutation also has high risks in males. Pancreatic, prostate, melanoma, breast cancer. But monitoring is key!!!!

lisa on

Jill – With this gene mutation, the bso can stop the hormones that can offset the repair of cancer causing cells in the breast. Not documented but many reports.

Holly on

Many years of health to you Kara!

Your family is just gorgeous.

lisa on

Sooo sorry to hear your misfortune Mimi. My cousin also genetically predispositioned has an oopherectomy and the did find cancer. If she had not had the surgery she would not be here. She is bald and is puking, but it was early enough that she will also live to tell the tale.

Jazzicat on

So brave. So strong. Thanks for being willing to share a very personal story. I wish you joy with your child and husband, and a really peaceful life.

Elle on

Not sure why anyone thinks she is passing on “bad genes.” We are all diseased, genetic cesspools to a degree. If everyone worries about passing on bad genes, there’d be no children at all!!

Anonymous on

I saw a comment from someone who said how dare her pass on her crappy genes to her child. We all pass on something to our child, not all of it good. Should we all NOT have children?

kitty62862 on

Bravo, Kara!

The infertility is often the anonymous early warning (see Gilda Radner)

You had the surgery, you used a surrogate, good for you.

Sharon Osbourne, Angelina Jolie, and now Kara, leading the way.

We have to be able to make our own decisions.

CABL on

First and foremost, I am very happy for those who have come forward and beat the odds or have decided to be proactive with treatment. That being said, I knew there would be significant backlash from the majority when a few others DARE suggest that maybe having children when you are at high risk for passing on a genetic defect is not the best idea. I will not be ugly in return but, like it or not, having children in general is not a selfless act, it is an extremely selfish one. There is a significant overpopulation problem in this world and I don’t think a little selective breeding would hurt. I do not have children because both sides of my family are riddled with cancer AND mental illness. It was not worth passing those risk factors on for my own selfish wants. Sometimes what people want, is not what is best for them or society as a whole. Just something to think about….flame away, I have thick skin.

Lili on

Was it from donors egg/sperm or theirs? If it was from another then there should not be a great worry for the child.

Observer on

What a happy story. Thanks to the media this family will hopefully have a long and happy life. Ahhh. Beautiful boy.

Carrow on

I am glad she and Angelina are sharing their private medical news hopefully this will spark the interest of more women and they’ll get tested to so they can be proactive in their health future and make the best choice for them before they get cancer and then are stuck with being reactive.

Karen on

Thanks so much for sharing this story. You’ve changed a lot of people’s lives.

Robyn on

Maybe somebody could explain to her that Washington, D.C. is not a state.

Flipper on

from what ive read though theres a strong possibility the positive readings are not true, i hope thats changed

kimmylouwho on

I know the intense desire to have your own child, but why did she use her own embryo? Now her son has the chance to have the same BRCA2 gene which he can pass on and puts him at higher risks of breast cancer, pancreatic cancer & prostate cancer. As a parent, I don’t think I would have chanced it. I think I would have gone the adoption route. I hope for the best future for all of them.

Barb on

She should not miss out on motherhood for fear of passing down her genes – who knows what medical advances will be made in the next 30 or 60 years for her child/grandchildren? I’m sure she does not wish she had not been born because she has her mother’s genes. And look at how medical advances have changed Kara’s future vs. her grandmother and mother. And even if medical science for these cancers did not change and she has a daughter via surragate one day, I really doubt her daught will say “I wish you never had me because I have to get my ovaries out”. I’m sure she would be greatful to be alive and to have the chance at a long and happy life by choosing to proactiving remove some organs.

zoot on

Ok so she passed the gene to her son

cc on

I understand all the pros and cons that she speaks about and just as stated she wanted to be around for her son. With breast and ovarian cancer in her family she did what she thought was best at the time. I am sure she will have the other surgery done with further talks with her doctors. Every case is different you have to remember that and no second guessing the person for the choices they make.

HomeHappy on

I wonder if any one out there might have an answer for this. I know research has shown that women that breast feed reduce their risk of breast cancer, by a pretty nice percentage. I wonder if this would be the case in Kara’s condition. Does any one know of studies that say that breast feeding reduces the risk of breast cancer in BRCA2 positive women?

Also, I understand what people are saying about not wanting to pass on “bad” genes, but do we really know (or care) what his exact genetic make-up is? If BRCA2 is dominate all she had to do was receive the gene from her mother. However, Kara’s father’s family may have no history of it and she would have one of his X genes (if it is carried on the X gene). This means her son has the chance of having a carrier free gene. Genetics is too complex to think cut and dry about it. A lot of people have a family history or heart disease and high blood pressure, they know they have it, they know it is genetic, yet they still choose to have kids. Her family now has the knowledge to know that, should her son have daughters, they should be screened.

Anonymous on

Males can be carriers of the gene also and pass it on to their offspring.

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