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The Empowered Patient

Aired October 3, 2010 - 19:00   ET




ELIZABETH COHEN, CNN SENIOR MEDICAL CORRESPONDENT (voice-over): My mother Sheila Schwartz is a firecracker. Mother of four, grandmother of 11, wife, lawyer, and social worker, she's been active and healthy her whole life.

But around the time she turned 60, something changed -- she began feeling achy and dizzy. Her blood pressure went up and she was so tired.

My mom's family doctor told her, "Don't worry about it." And listening to the doctor and not questioning him almost killed her.

Her doctor was wrong, and my mother became deathly ill.

(on camera): So they told you, "Look, lady, if you just stop working so hard, your blood pressure will come down."

SHEILA SCHWARTZ, ELIZABETH'S MOTHER: Don't get excited, don't enjoy life so much, don't be quite so busy.

COHEN: So, they kind of patted you on your head and said, calm down.

SCHWARTZ: Calm down. I was an empowered mother. I was an empowered social worker. I was an empowered student. I was not an empowered patient.

COHEN: Did you just trust the doctor?

SCHWARTZ: Yes, that's what I was always brought up to do. That's what I was brought up to do.

COHEN: A good girl from the '50s.

SCHWARTZ: Absolutely, from the '40s.

COHEN (voice-over): Years ago, if mom's doctor had only ordered a simple blood test instead of blaming her, he would have seen my mom's kidneys were in trouble. Caught early enough, a simple treatment could have fixed it, but now, it's come to this -- she needs a kidney transplant to save her life.

UNIDENTIFIED MALE: Hello. Good morning. SCHWARTZ: Good morning.

UNIDENTIFIED MALE: Do you know why we're here? I do. OK.

COHEN: Our cousin David Canter (ph) is giving her one of his kidneys.

(on camera): You don't look sick enough to need surgery.

SCHWARTZ: I don't feel sick enough to be in surgery. I really don't.

COHEN (voice-over): But it's happening. The transplant surgeon doctor, Seth Karp, is performing my mom's surgery.

(on camera): Is my mom going to be OK?

DR. SETH KARP, BETH ISRAEL DEACONESS MEDICAL CENTER: I think so, you know? We do a lot of transplants and it's pretty routine now.

COHEN: After the surgery, what is the best case scenario for my mom?

KARP: Best case, which is the most likely scenario, is that she goes home in four days.

COHEN: What is the worst case scenario?

KARP: And the worst case scenario is that she wouldn't make it through the operation.

COHEN: Bye, mom.

SCHWARTZ: Thank you.

COHEN (voice-over): When my mom first got sick, I wish I could have introduced her to Evan Handler.

EVAN HANDLER, ACTOR: Thank you very much.

COHEN: No, he's not a doctor. He's actually an actor.


HANDLER: Charlotte York, will you marry me?


COHEN: Evan plays Harry Goldenblatt, Charlotte York's husband on "Sex in the City." But here's what you might not know --

HANDLER: I was 24 years old when I was diagnosed with acute myeloid leukemia, which at the time was considered to be incurable. I know that my chances of survival were greatly enhanced by being as active and involved and demanding as I was, because I don't completely trust anyone, and it makes me difficult to deal with, but it's also saved my neck.

COHEN (voice-over): You really had to argue for them to do the right thing.

HANDLER: You know, you have your little squeezy thing to ring the nurse's station, and I heard exasperated voices saying, "Evan, we're on a dinner break. You know, we can come to you in 20 minutes." And I said, "Well, OK, the drug that's been running into my vein for the last 20 minutes is labeled with another patient's name." And there was a stunned silence, and then someone said, "We'll be right there."

COHEN: So, they considered you a pain in the neck in some ways.

HANDLER: People just wouldn't even follow the rules that were there for hygiene and protection. If I would say, you know, "Aren't you supposed to put this stuff on before touching me," I got the most incredulous responses, "I don't have time to do that before I come into every room. I have 30 patients on the floor I have to take care of."

COHEN: So, when you were dissatisfied, you looked elsewhere.

HANDLER: Oh, yes. Yes.

COHEN: Do you think that saved you?

HANDLER: I think people should be really, really quick to find new doctors.

COHEN (voice-over): My mother came of age in the Marcus Welby era when doctors could do no wrong. So, she didn't challenge things like Evan did, and it cost her her kidneys.

KARP: Everything went fine. Everything went fine.

SCHWARTZ: Hi, guys.

COHEN (on camera): I love you. Can I kiss you? I'm so glad you look so great. You look so great.

SCHWARTZ: This is -- this is miraculous.

Oh, my. Is this amazing?


SCHWARTZ: Is this amazing? Thank you, thank you, thank you, thank you.

COHEN: So, it's been eight months.

SCHWARTZ: Eight months next week.

COHEN: How are you feeling?

SCHWARTZ: Great, really good. Really good.

COHEN (voice-over): I'm so grateful things worked out for my mother, and what I learned from all this is you can trust your doctor too much and you can be too nice.

(on camera): Lesson number one: Don't be a good patient.

Come take this quiz with me. Are you being too nice to your doctor? Do you worry what your doctor thinks of you? Are you too scared to tell your doctor you want a second opinion? Do you stay with a doctor even if you don't like them?

If so, you're being too good, and that's bad.

CROWD (singing): Happy anniversary, mom and dad. Happy anniversary to you.


COHEN (voice-over): Eight months after her kidney transplant, my mom and dad celebrated their 50th anniversary.

(on camera): I remember growing up that you would question doctors who are taking care of us.


COHEN: But you didn't question the doctor who was taking care of you.

SCHWARTZ: As I look back, I realized I was raising four children. I had a household to run. And at some point, I was working quite a bit.

But when they told me that really there was nothing I could do, I just forgot about it.

COHEN: What advice would you give someone who's not feeling well but whose doctor says, "Oh, don't worry about it"?

SCHWARTZ: I would say, think very carefully about what you're hearing. If it doesn't make sense to you, if it doesn't feel right or doesn't sound right, go get a second opinion. Don't take the first answer, and don't take an answer that says there's nothing we can do.


COHEN: Next, a man suffers a massive stroke on a remote mountain. And a hero argues to get him the right care.


KATHY SNYDER, NURSE: Kind of got like this in each other's face.


COHEN: She saved him. What she knew and you need to know, too.


(BEGIN VIDEOTAPE) COHEN (voice-over): Bear Valley, California, is a mountain paradise -- gorgeous skiing and loads of snowmobilers. After skiing down the slopes one morning, Chuck Toeniskoetter stopped in at a local snowmobile center. And while he was inside, all of a sudden, he fell down on top of a snow mobile.

CHUCK TOENISKOETTER, STROKE SURVIVOR: It just all gave away and I fell right across the front of the snowmobile like -- like this one.

You could draw a line down the center of my body and everything was disconnected on the right side. My brain and body are disconnected.

COHEN: Chuck, 55 at the time, in the prime of his life, had just had a massive stroke.

Shop manager Mike Tinakoula (ph) helped Chuck into a chair.

TOENISKOETTER: And I remember the leg being out here, the arm being down here, and just really helpless.

COHEN (on camera): So, here you are. You've collapsed, and you are in the middle of nowhere.

TOENISKOETTER: This is not a good place to have a stroke.

COHEN (voice-over): Bear Valley is remote, high up in the Sierra Mountains. The village is an hour and a half away from the nearest hospital. It's a dangerous place to have a medical emergency.

After Chuck's stroke, he had only three hours to get to the hospital, have all the right tests, and receive the medicine he needed. The time sensitive drug TPA, without it, Chuck could become paralyzed or worse.

That day, there was five feet of snow on the ground. Bear Valley's search and rescue responded to the call for help within minutes. Nurse Kathy Snyder was on the scene.

(on camera): So, you asked him to smile.

KATHY SNYDER, NURSE: Right. He got a big smile and one side was clearly down. And the next thing to do is to check his grips. And I come down and check here and have him squeeze, squeeze really hard, and one side didn't have any grip at all. So, now, I know there's a stroke and it's progressing.

COHEN: So, you knew he was in big trouble.

SNYDER: He needed to go to a hospital. He needed to have a CAT scan, and he needs to go somewhere fast.

COHEN: Your priority at this point was to get Chuck out of here.

SNYDER: And the best way to do that is with a helicopter.

COHEN (voice-over): Medics put Chuck in the back of a sheriff's vehicle to get him to the landing zone as quickly as possible.

TOENISKOETTER: I mean, it was just leaning up against the door, slumped against the door because this again, the right side, was non- supportive. I couldn't support anything.

COHEN (on camera): You must have been scared.

TOENISKOETTER: Well, I was very concerned because I didn't know what was going on. I really did not know what was happening to me. How could this be? How come my hands not work? How come my legs not support me? What makes that happen? I didn't know.

COHEN (voice-over): The emergency team raced Chuck to the edge of town to wait for the helicopter to land.

SNYDER: Chuck was getting worse, the symptoms were progressing.

COHEN (on camera): Are you getting concerned?

SNYDER: I was getting very concerned because every moment, you're looking at disability. You're looking at death -- potential death. They loaded him up and we carry him out to the helicopter.

COHEN: So, Chuck, you're lying here in the helicopter waiting for it to take off.

TOENISKOETTER: I just remember the rotors turning and the snow flying -- and just waiting to go.

COHEN: Time is of the essence, and this helicopter doesn't move.

TOENISKOETTER: When you're sitting here waiting and the rotors are going and the snow is flying, you expect to take off. And when it doesn't take off right away, you're curious what's going on.

COHEN (voice-over): Chuck desperately need to get to the hospital. Why were precious minutes being wasted?

(on camera): Now, at the time that you were lying here like you are now, did you know why it was taking a while to take off?

TOENISKOETTER: No. I didn't know why.

COHEN: And then the helicopter took off.

TOENISKOETTER: Yes. I knew I was in serious trouble. I knew we were going someplace that hopefully could address whatever they could on what I had, but I -- I wasn't giving it a lot of hope. Knowing very little about stroke and stroke care, I just wasn't sure what could be or would be done.

COHEN: With Chuck's life on the line, you'd expect the helicopter to fly south to the closest hospital. That's it down there, but that's not where the helicopter went.

Instead, the helicopter flew north to a hospital that was much further away. The flight took an extra 15 minutes. And those were 15 crucial minutes. By the time the helicopter landed here, at Sutter Roseville Hospital, Chuck had even less time.

TOENISKOETTER: Right off the bat, I didn't know why, but they were rushing me through a whole bunch of tests.

COHEN (on camera): When Chuck came in, the first thing you did was a CT scan.

DR. CHRISTOPHER MARKUS, SUTTER ROSEVILLE MEDICAL CENTER: Right. Automatically, get him to CT scan as fast as possible.

COHEN (voice-over): Dr. Christopher Markus was the emergency room physician on call. He took one look at the scan and knew he had a drug that could reverse the effects of the stroke.

MARKUS: If we don't see a bleeding stroke or a large area of non- bleeding stroke, he was a candidate for the TPA.

COHEN: TPA breaks up the blood clots that cause strokes. It could lead to a complete recover for Chuck. But he had to get it in time.

(on camera): So, look at the time stamped on that CT scan. What time is it?

MARKUS: Five-fifty.

COHEN: So, he had to get that drug within 10 minutes.

MARKUS: We had to get the drug in in the next 10 minutes.

COHEN: Talk about under the wire.

(voice-over): But, first, with time running out, Dr. Markus had to have a talk with Chuck. TPA, while it could save him, it could also kill him.

MARKUS: He could bleed and actually have a worse stroke or even die, but there was also, on the other side of the coin, is the fact that he could have complete resolution of the symptoms. And so, the only person who could make that decision was Chuck. And so, I put it to him about five minutes after the scan was printed.

We were up against the wall.

TOENISKOETTER: We were up against the wall. Absolutely, right, totally against the wall, because I just have to have a decision right now, and there was no decision for me. It was put it in, you know, do it. Let's get it on.

COHEN (voice-over): The clock had run out. Was TPA a miracle drug or a bust?

TOENISKOETTER: I sat in the bed, and I said, well, after about 15 minutes, nobody was there. I said, I'm going to wiggle my toes and see if this works. And I did, and I wiggled them and they worked. COHEN: Chuck called for Dr. Markus. He wanted a do over on that grip test, the one he failed so badly with Kathy Snyder.

MARKUS: I put my fingers out like this and I had him grab my fingers and squeezed.

TOENISKOETTER: And I just went like this, and I grabbed them and I squeezed as hard as I could, because -- especially with the right hand because I wanted to show him this was working and how successful this works.

COHEN: The TPA worked, but Chuck almost didn't get it.

Let's go back to the helicopter on Bear Valley Mountain.

(on camera): So, Kathy, what was the hold up? Why didn't the helicopter take off right away?

SNYDER: Well, the reason they didn't take off right away because we were having a big discussion about where they should take the patient.

COHEN: So, the flight nurse wanted to take Chuck to the nearest hospital, which was a small hospital.

SNYDER: He had a cardiac problem, he had a stroke problem, and who knows what else. He needed to go to a hospital where there were specialists standing by at the door when he came in that could treat all of these problems immediately. I wanted a cardiologist, radiologist, neurologist, neurosurgeon, CAT scan operator.

He could get a CAT scan immediately. Someone could read it. They can give them the TPA.

And these small hospitals don't offer that. They don't have those people available.

COHEN: You argued hard.

SNYDER: I did argue hard. Kind of got like this in each other's face.

COHEN: So, in the end, it worked. The helicopter team listened to you and did the right thing.

SNYDER: Yes, they did.

COHEN (voice-over): Of course, not all of us are lucky enough to have Kathy Snyder by our sides when we have an emergency.

(on camera): Listen two: choose the right hospital. The right hospital can save you. The wrong hospital can kill you.

(voice-over): Some hospitals, for example, are better equipped than others to take care of premature babies or to put a stent in a patient's heart or to give the right medicine to someone who's just had a stroke. (on camera): You can find out about the hospitals where you live so you'll end up in the right place. Let's say you need a certain procedure done. Online, you can find the answers to these important safety questions.

(voice-over): Which hospital does the most of these procedures? Which hospital has the lowest infection rates?

(on camera): You'll find the right places to go on our website.

You must think back and think, what if Kathy hadn't argued with them.

TOENISKOETTER: I am convinced there was a very, very high probability I would have been in a wheelchair.

COHEN: What an incredible thing she did.

TOENISKOETTER: She was the conductor and she put everything in motion to make the right things happen.

COHEN: Can anyone do this? I mean, if you feel like a bad decision is about to be made with your health care, can you put your foot down?

SNYDER: If you have enough education behind you, and you know the right buzz words, you can change hospitals. Everybody has that availability and they should be aware of it.

COHEN: Is the lesson of your experience that matters which hospital you end up in?

TOENISKOETTER: It's huge. If I were going to have some heart work done, I'd be going to a hospital that does one heck a lot of heart operations. If I'd have a hip replacement, I'd go to a fellow that the doctor that's doing them day in and day out.

People really owe it to themselves to find out what resources are available in their area or what they can ask for when something happens to them.

COHEN: Know your hospital.

TOENISKOETTER: Know your hospital, know the specialties, know what you can ask for.


COHEN: Next, a mom and dad fear their daughter is dying. But no one at the hospital will listen.


COHEN: Did you feel like you were bugging these people?

UNIDENTIFIED MALE: We certainly were.

(END VIDEO CLIP) COHEN: They knew the doctor was wrong, but could they convince him in time to save her life.



COHEN (voice-over): One spring evening, Don McCracken was playing ball with his kids in the front yard. He meant to hit a fly ball to his son Matthew, but it had socked his 7-year-old daughter Morgan on the head. She knelt to the ground in pain, and the whole family came running.

DON MCCRACKEN, MORGAN'S FATHER: We were all huddled around her, and, you know, she was crying, and she had a bump on her head.

COHEN (voice-over): Where on the head did it hit her?

D. MCCRACKEN: Got right here.

COHEN: That's a -- that's a hard ball, a real baseball.

D. MCCRACKEN: Yes. That's one that they were playing with.

COHEN (voice-over): Morgan had quite a bump on her head. And a blow like that can be deadly. The very next day, actress Natasha Richardson would die of a similar head injury.

(on camera): So, as soon as it hit her head, what did you do?

D. MCCRACKEN: And we started asking her questions about, you know, is she dizzy? You know, how many fingers am I holding up? What's your name? Where are you at? You know, all those kind of questions and to a point where it actually irritated her. She's answering everything perfectly.

CONNIE MCCRACKEN, MORGAN'S MOTHER: Eventually, the bump went right down and she was fine.

COHEN: So, the first day after she got hit on the head, anything abnormal?

D. MCCRACKEN: Nothing.

C. MCCRACKEN: She had a spelling test. She got 100 percent on it.

D. MCCRACKEN: She always does well on her spelling tests.

COHEN: And the second day?

D. MCCRACKEN: Another day of activities, school, after school activities, dinner, homework.

C. MCCRACKEN: No signs, no symptoms, and I'm, a worried mom, asking here, are you sure you're OK? You're fine? And, "I'm fine, mom, I'm fine. You know, quit asking about my head." COHEN (voice-over): That night, Morgan's mom Connie tucked her into bed.

(on camera): The moment that you laid her down and you kissed her good night, you told her you loved her --


COHEN: -- she seemed OK?

C. MCCRACKEN: Perfectly line, perfectly fine. Had all her animals and everything and she was all set, turned the light out and I walked out. Just a few steps out, that's when she started crying.

COHEN: Tell me what you heard.

C. MCCRACKEN: "Mom, mom," and I came running back, I'm like, "What's the matter?" She said, "My head, it's hurting." She was holding it. "And my head is hurting, my head is hurting." She said, "It's getting worse, it's getting worse, my head."

And I picked her up and I carried her to our room and later down on our bed and we talked and it just got worse and she wanted to go to sleep all of a sudden.

D. MCCRACKEN: When I came in and just to see what was going on, because I could hear, you know, Morgan crying a little bit.

C. MCCRACKEN: And I said, you know, she's complaining of a headache. I think something is wrong. I think it might be related to the -- being hit in the head.

COHEN (voice-over): The McCrackens rushed Morgan to the emergency room. Natasha Richardson's death the day before in the back of their minds.

D. MCCRACKEN: We were barely in the car a few minutes that's when she started vomiting.

C. MCCRACKEN: When she started, you know, with the headache and the vomiting and lethargy it all kind of came back that morning, I had watched the signs and symptoms on TV. So, it just kind of replayed in my mind as we're driving to the hospital that possibly there are some similarities here.

COHEN: Natasha Richardson felt fine after she hit her head while skiing and then she died of a blood clot on her brain. Could this be happening to Morgan?

(on camera): Did Natasha Richardson's story heighten your senses even more?

D. MCCRACKEN: Oh, I definitely think so, yes. It makes you think very strongly that, you know, something needs done here to confirm whether or not there's a problem.

C. MCCRACKEN: We couldn't get to the hospital fast enough.

D. MCCRACKEN: I carried her in. She was too lethargic to walk.

COHEN: When the doctor showed up, what did he say?

D. MCCRACKEN: He didn't seem concerned that it was, you know, a major head injury, as we had feared.

C. MCCRACKEN: I'm sure it's late, she's tired. She probably has a touch of the flu.

COHEN (voice-over): But the McCrackens knew better. They knew this was no flu virus. They pushed the doctor for a CT scan of Morgan's brain.

C. MCCRACKEN: I'm sure that they weren't happy with me because I kept asking.

COHEN (on camera): Did you feel like you were bugging these people?

D. MCCRACKEN: Oh, we certainly were. If we weren't asking, we were -- one of us was probably in the hall way, hoping to be seen, hoping to keep us in their vision so that they knew we were still waiting.


COHEN: Next, Morgan's condition deteriorates. Will the doctor finally pay attention to Don and Connie and give her the CT scan?

And the one question to a doctor that can save your life.


DON LEMON, CNN ANCHOR: Morgan McCracken got socked on the head with a baseball, and a few days later, she had a terrible headache. Her parents, Don and Connie, rushed her to the emergency room where a doctor told them Morgan was fine. She just had a touch of the flu. But Don and Connie had a gut feeling the doctor had Morgan's diagnosis wrong. They begged for a CT scan of her head, but the doctor wouldn't listen.

ELIZABETH COHEN, SENIOR MEDICAL CORRESPONDENT: You're not a doctor. You're not a nurse. Why were you so convinced that you were right?

CONNIE MCCRACKEN, MOTHER: This wasn't our Morgan. She's had the flu before, and this wasn't how she acted. There was something definitely wrong. You could feel it in your gut.

COHEN (voice-over): After two hours, the doctor finally did something.

CONNIE MCCRACKEN: They asked her, "what grade are you in?" She was looking at you and answering totally wrong and not laughing. There is no silliness. She's just serious. You know, I'm in fifth grade and I have (INAUDIBLE) and clearly she was in second great, (INAUDIBLE) not appropriate, not right. COHEN (on camera): When the answers weren't right, what did the doctor say?

CONNIE MCCRACKEN: Let's do the CAT scan. I'll be surprised if we find something.

COHEN: Do you think they did the CAT scan just to sort of make you happy?

CONNIE MCCRACKEN: Absolutely. They were just, you know, appeasing a nervous mom.

COHEN: What did you think the results of that CAT scan was going to be?

DON MCCRACKEN, FATHER: I knew in my heart I thought I knew there was a problem.

CONNIE MCCRACKEN: He came back and said, "I'm surprised." He goes "I'm surprised. There's something there."

DON MCCRACKEN: There was a leakage of blood into her skull.

COHEN: So you were right all along.

DON MCCRACKEN: Yes. Yes. Unfortunately, we were right.

COHEN: Medics rushed Morgan by helicopter to nearby Rainbow Babies and Children Hospital in Cleveland, Ohio, her dad at her side.

DR. ALAN COHEN, RAINBOW BABIES AND CHILDREN'S HOSPITAL: She wouldn't wake up. We had to pinch her and she would move but she wasn't speaking to us.

DR. ALAN COHEN (on camera): Rainbow's chief neurosurgeon Dr. Allan Cohen realized Morgan was slipping into a coma.

(on camera): So while the trauma team was working on Morgan, you stood right here and had a conversation with her dad.

DR. ALAN COHEN: As we wheeled the daughter up to the operating room, she has a blood clot on the brain, it's like what happened to Natasha Richardson. We have to take it out.

COHEN: So what is going through your head at that point?

DON MCCRACKEN: Don't let her die. Save her. I asked him that.

DR. ALAN COHEN: This is what the brain looks like normally. Morgan was hit in the head with a baseball over here. And what did is it took her brain and turned it into this. This is a big blood clot inside the skull, outside the brain, called an epidural hematoma and that hematoma as it expands compresses the brain and causes the neurological problem that she had. That's what we had to remove to take out the blood clot and stop the bleeding.

COHEN (voice-over): Today, Morgan's just fine.

(on camera): In the emergency room, the doctor said she had a virus, and she just needed to get some rest. If you had listened to that advise and brought her home to go to bed and rest, what would have happened?

DON MCCRACKEN: She probably wouldn't have woken up the next morning and we would have lost her.

COHEN: What an odd coincidence that Morgan's accident and Natasha Richardson's were right almost at the exact same time.

CONNIE MCCRACKEN: A lot of people have made a comment that her angel came and saved Morgan's life.

COHEN: Do you think her angel was there?

CONNIE MCCRACKEN: I think so. I really think so.

COHEN: So you had been in so many magazines.


COHEN: What do you think when you see yourself in a magazine?

MORGAN MCCRACKEN: I think like I'm happy because I have been in a magazine and I'm helping people.

COHEN: How do you think you're helping people?

MORGAN MCCRACKEN: It tells them what to do if they have something like that.

COHEN: Do you feel like a lucky girl?


COHEN (voice-over): Lucky because her parents followed their instincts.

(on camera): Lesson number three, trust your gut. Because chances are a misdiagnosis will happen to you. There are no hard numbers but consider this, some studies show one out of 10 diagnoses turn out to be wrong. One simple question could save you from a misdiagnosis. Here it is.

(voice-over): Doctor, what else could this be?

(on camera): Six words that could put your doctor on the path to getting it right. If they listen. If they don't, you have to be relentless.

The McCrackens at the first hospital really had to push for a CT scan. What is the lesson there?

DR. ALAN COHEN: The lesson, I think, is listen to your mother. Nobody knows the patient as well as mom or dad, and if mom or dad says my kid is not right, they are correct more often than not.

COHEN: Your hit off the bat caused this accident.

DON MCCRACKEN: Absolutely.

COHEN: But you saved her, too.

DON MCCRACKEN: Well, I like to think that the doctors did it, but you know, I help to think Connie and I did the right thing to get her the care she needed so it wasn't more tragic.


COHEN: Next, she does her own research, she asks her doctor plenty of questions.

UNIDENTIFIED FEMALE: Is that a clue there was something wrong?

COHEN: Meet a medical detective. She's on the case to change her life and her daughter's too with a test she discovered on her own.


COHEN: When Geralyn Lucas was 27, she found a lump in her breast. It was cancer, and a really vicious type of cancer. Before she had her breast removed, Geralyn put on bright red lipstick. She wanted to show to her surgeons and herself that even without her breast, she was still a hot, sexy woman.

GERALYN LUCAS, BREAST CANCER SURVIVOR: I did not think I was going to live to 30. It was a very fast growing tumor. I just thought, I'm losing so much. I'm having my breast removed. My hair is going to fall out. It was kind of my hope and faith I would wear lipstick again on my own terms.

COHEN: And boy, did she ever. Geralyn lived and pursued her passions. She's a journalist and she wrote a book called "Why I wore Lipstick to My Mastectomy," which has been translated into seven languages.

LUCAS: Write me a note on my web site and I'm going to get you more books. OK. Thank you for coming.

COHEN: Breast cancer survivors line up for her signature and her hugs.

LUCAS: So good to meet you, too. Thanks for coming today.

COHEN: They sent her photos of themselves wearing lipstick to their mastectomies. Lifetime even made a movie about Geralyn. It was pretty accurate except they made her into a blonde. After surviving breast cancer, Geralyn had a great career, a loving husband. She was just missing one thing.

LUCAS: I always wanted to have children. And I just couldn't wait. I had two little brothers growing up. I was like their little mom. COHEN: But Geralyn and her husband, Tyler, hesitated. What if some horrible gene had given her breast cancer at such a young age. What if she would pass that gene on to a daughter?

(on camera): You had genetic testing. What did you find out?

LUCAS: Negative. I was skiing with my husband, skiing on a mountain and I got this call. And it was like we were so happy. Like, I remember he did this kind of stunt. Like, he's a really good skier, like, whew, you know.

COHEN (voice-over): So Geralyn went ahead and got pregnant and gave birth to the daughter she waited so long for, Skye Meredith Lucas.

LUCAS: Have a good day.

COHEN: Today, Geralyn truly has it all. Her daughter, Skye, is now 11. And she has an adorable son, Hayden, who is four. But now there's a new cloud hanging over her family. Her genetic testing 14 years ago was negative, but recently, something strange has been happening. Several of her relatives have been diagnosed with breast cancer.

(on camera): If this is Geralyn -

LUCAS: Right.

COHEN: Who else has breast cancer in your family now?

LUCAS: Lynda has breast cancer.

COHEN: And that's your cousin.

LUCAS: And then Lynda's sister, Wendy, had breast cancer, and now Lynda's daughter, Hallie, has breast cancer and she's 39.

COHEN: So this is one, two, three, four relatives with cancer.

LUCAS: Yes, and here is my little girl. She's like, ah! You know, and she's like looking at all of this like what is going on over there.

COHEN: Your mom and I were chatting and she told me that sometimes you get worried.

SKYE LUCAS, GERALYN'S DAUGHTER: I get scared sometimes because I know a lot of people who had cancer. I worry about myself because sometimes when I'm very upset, I just say, I know I'm going to get this. It's so obvious.

COHEN: What do you mean, you said "it's so obvious." What is so obvious about it to you?

SKYE LUCAS: I should be most likely to get it because my mom had it and my second cousin had it, so.

COHEN (voice-over): And then more reason to worry.

(on camera): 14 years ago, they tell you, you don't have any of the breast cancer genes. But you found out recently -


COHEN: That test wasn't complete.

LUCAS: It wasn't, no. And that was a false reassurance.

COHEN (voice-over): She learned from other breast cancer survivors that a new test is more complete. It's called B.A.R.T..

(on camera): So these other breast cancer survivors said you ought to have B.A.R.T..


COHEN: And you said -

LUCAS: What's B.A.R.T.? That sounds like a guy's name, sounds like a guy I dated. BART, I don't know.

COHEN (voice-over): B.A.R.T. is a test that searches deep into a woman's DNA to look for breast cancer genes, a lot cheaper than the test that Geralyn had had. It's so cutting edge many doctors haven't even heard of it.

(on camera): So were you shocked when you found out, "wow, that test I had, it wasn't complete?"

LUCAS: Yes, I was shocked and disappointed because when I had that test, I felt i had crossed that off my list and I didn't have to worry about Skye. Now it's not hypothetical. Now, this is something that is on her radar.

COHEN (voice-over): Geralyn knows she has to get the B.A.R.T. test. If it reveals she has the bad gene, there's a 50/50 chance she passed it down to Skye.

LUCAS: I feel very guilty that this is part of her vocabulary and this is part of her world but in the same breath, I feel like maybe I'm teaching her a lesson. Knowledge is power, that she has to be informed and proactive about her own health. Every parent wants the best for her child. I want to protect her.

UNIDENTIFIED FEMALE: That's so cute, a great idea.

COHEN: And protect herself. If Geralyn has the bad gene, there's something she can do to try to make sure she doesn't have cancer again.

LUCAS: I can have a preventative mastectomy on my other side, which I absolutely will do and I can have my ovaries removed, which I will absolutely do.

COHEN: It's test day, and Geralyn heads to the doctor.

(on camera): So are you nervous?

LUCAS: I am. I'm sad, I mean, I'm sad I have to do this. I feel like when is this going to end? You also have to have game on, your little clutch, you got your high heels on. You also have to -

COHEN: And of course, your signature lipstick.

LUCAS: You always have to have your lipstick.

Hi, Lynda. Hi, Hallie.

COHEN (voice-over): At the doctor's office, her aunt and cousin, the two who has cancer, are there to greet her.

LUCAS: We always knew we had something weird in the family. Now, we're getting to the bottom. We thought it was problems with men. We don't know.

My got. That's the best needle I have ever had. It's ridiculous. You're such a soft touch.

COHEN: The blood test takes about a minute.


COHEN (on camera): What do you think when you look in that box? There's your blood.

LUCAS: I know. I'm thinking about Skye.

COHEN (voice-over): Geralyn goes home to wait one month until her test results come back.

LUCAS: I love you. I was proud for you today. Brave for you. I love you. You're my girl.

COHEN: Next, her results are in.


COHEN: Geraldine Lucas beat breast cancer but she's terrified it's going to come back. And what freaks her out even more is that her daughter, Skye, can get it one day too. So Geralyn has just taken a cutting edge tests. Is there a gene for breast canner hiding in her DNA? And if so, has Skye inherited it? Geralyn is about to find out.

(on camera): This is Geralyn's blood sample and it will be sent overnight to a specialty genetics lab in Utah. It's going to pass through many hands between here and Salt Lake City. You know, to everyone else this is just a vial of blood but for Geralyn, this is her future and perhaps even more importantly to Geralyn, this is about her daughter. This is about what happens to her daughter.

(voice-over): If this test shows she has a dangerous mutation there's a 50-50 chance she passed it down to Skye. She will have to tell Skye that and plus she'll have to have her own ovaries and her other breast removed so they won't get cancer too. Geralyn waits.

(on camera): It's been a month, a month of tough waiting for Geralyn and her daughter but today the results are in and I've come back to New York to go with her to get them. So when you got sick at 27, your red lipstick got you through it.

LUCAS: Yes. I think that -

COHEN: I noticed you put it on again today.

LUCAS: Oh, yes. I'm wearing red lipstick today. I think when I put on my red lipstick today, it was kind of fortifying myself again and just reminding myself of that earlier courage I found. I didn't feel very courageous this morning. I felt very scared.

COHEN: You have this gene, it means that it wasn't just a fluke.

LUCAS: right.

COHEN: And you might have passed that gene on down to your daughter.

LUCAS: Yes, but the hardest part of today is that if I have it, then I have to say to Skye. I have it. We don't know if you do.

COHEN: So if the results today are that you do have the gene, you need to get ready to have another surgery, right?

LUCAS: Yes. I'll have another mastectomy and my ovaries out. You know, it's sad and it's very scary but again, I'm trying to put a spin on this that this is a lucky thing to have to make these hard choices. You know, I'm making them. I feel like I'm in control.


LUCAS: Thank you.

COHEN (voice-over): Dr. Rachel Werner has the results in her hand.

DR. RACHEL WERNER: So how have you been?

LUCAS: Nervous. I just have a lot of different emotions going through the testing. It's just been a little bit of a loaded time.

COHEN: Geralyn is prepared for this moment. She's ready to tell her daughter her genetic destiny. She's ready to have her other breast removed.

LUCAS: If I do have it, I will schedule my surgery when I leave here this afternoon.

WERNER: No surgery needed. You're negative.

LUCAS: I'm negative. I don't believe it. Are you sure it's right?


LUCAS: You promise.


LUCAS: Oh, my god. So relieved. This is crazy. So I fully expected I was going to have this gene. I was so terrified to tell Skye because I've been so worried about her. This is almost like more for her than for me.

Mommy got her results. It's negative.


COHEN (on camera): How did it feel to tell her just now?

LUCAS: Oh, it felt great. And getting to tell Skye was the hugest thing of that news. That was the best news for me. And I feel I did it for her and then I got to reassure her at this critical point in her life where she got just so scared that that made it all worth it.

COHEN: You just got the big news.

SKYE LUCAS: Yes. I'm really happy for my mom and she just got a big weight off her shoulders and same with me.

COHEN: Are you relieved?

SKYE LUCAS: Yes. A lot.

COHEN (voice-over): This test has made a huge difference in Geralyn's life and Skye's life. And what's really pretty amazing is Geralyn found out about this new cutting-edge test on her own from other survivors.

(on camera): What lessons have you learned from all this?

LUCAS: I have to keep searching. I can't rest on my laurels even though it's been 15 years.

COHEN: I call people like Geralyn medical detectives. From the very beginning, Geralyn's been on the case, following leads, gathering clues, all to save her life.

It's just like in her movie when she was trying to decide whether to have a mastectomy or a lumpectomy.




UNIDENTIFIED MALE: It's what you do. I don't know. It took you three weeks to research our dry cleaner. You are a researcher, do the research. (END VIDEO CLIP)

LUCAS: I remember when I convinced my doctor to give me a mastectomy and not a lumpectomy and he said you made the harder, smarter decision. And he was like, I am so happy that you did all this research.

COHEN: You didn't have to do all these research, you could have just done whatever your doctor told you to do.

LUCAS: Probably would have been easier. I mean I subscribe to the "New England Journal of Medicine." Every step of the way, I kind of investigate it and try to be proactive.

COHEN: You have no medical training at all. How do you read the "New England Journal of Medicine"?

LUCAS: I don't understand like every third word. But then I just try to figure it out. I just like kind of, I don't know - maybe understand like half of what it say.

COHEN: You leaf over them?

LUCAS: Yes. And I get the gist of it.

COHEN: Lesson number four. Do your own research. You can decipher studies in medical journals.

(voice-over): Don't think of it as reading a scientific journal, think of it as reading "Anna Karenina." I call it the Russian novel approach. You know, how with the Russian novel, you just meant to leap out all those long complicated names that you can't understand? Well, do the same thing her. If you don't know what case reports or case series or in situ mean. Leave them out. You'll get reporting success treating deadly disease with super drug.

(on camera): Sounds promising, right? Now you can take that into your doctor and have a discussion and you know what else you can do? You can ask the doctor who wrote the study for advice. Geralyn has done it.

So you go on line and you read studies by doctors you don't know and you just e-mail them and they e-mail back. They do. They e-mail back.

COHEN: Here's what you should say in an e-mail to a doctor.

(voice-over): Stroke the researcher's ego. Tell them you enjoy reading their article. And then get to your point. Briefly ask your question.

By being a relentless medical detective and staying ahead of the curve, Geralyn stayed ahead of breast cancer.

LUCAS: If we can be positive and show our daughters that they can be really smart and informed and aggressive, I think that's the best legacy I can give my daughter.

COHEN: When you do hit an unhealthy bump in the road, remember that you are perfectly equipped to take charge. Don't be a good patient. Choose the right hospital. Trust your gut.

(on camera): And do your own research. Doctors and nurses save lives, but sometimes you'll be the one to save your life or the life of someone you love.

I'm Elizabeth Cohen, thanks for watching.