Knowledge is Power: Breast Cancer Prevention With Nancy Gade M.D.
30 Oct 2019 · 29 min
Dr. Nancy Gade discovered she carried the BRCA1 mutation after her 80-year-old mother was tested. She explains screening schedules for BRCA carriers (mammogram, ultrasound, and MRI every six months), why she chose preventive surgery, and how genetic counseling and patient support groups help families make informed decisions.
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I thought it was a little crazy. I kind of yelled at her when she told me. I said, what are you doing? You're 80 years old. Why are you getting tested for genetic diseases? What are you going to do at your age? And she was perfectly healthy. She never had any cancers. Really, I think an accurate family history would probably have produced the same result. You know, I guess I should have asked.
From Mind Body Space, it's The Chill Pill for Moms, a show about stories of resilience, antidotes to stress that actually work, and the right dose of science-backed prevention to to keep you and your family well. Hey, it's October and the kids are back at school. We pause to take a deep sigh of relief and then we see the pink ribbons. It's Breast Cancer Awareness Month, a great cause. It reminds me of my beautiful, intelligent, and creative genius friend who I miss dearly. Claire and I met at the fun age of 16, and after decades of really special friendship, she was diagnosed with breast cancer in her 30s. She was too young for the mammogram, and when she felt that lump, cancer wasn't even on her radar. I remember this call so vividly, a cheery voice telling me not to worry. I went with her as the doctor friend who would take notes on her first appointment at Sloan Kettering so she wouldn't have to remember everything. Dr. Badat, an amazing physician with an incredibly reassuring but realistic bedside manner, told us that they really needed to throw the kitchen sink at this. She had stage 4 metastatic breast cancer, and after a courageous battle, we lost her. So the pink ribbons remind us of loved ones, and for some of us, we feel that knot in our stomach, that dread of making a doctor's appointment for ourselves. After all, nothing makes us moms more stressed than medical issues, right? I'm Dr. Juna Bobby MD, and on today's show, how Dr. Nancy Gade, an internal medicine specialist, navigated a surprise discovery about her own family's medical history. Her message to you is that knowledge is power. Listen to how she mustered up the courage to ask questions and to do what it takes to stay healthy and prevent disease for herself and her kids. Dr. Gade is a board-certified graduate of NYU School of Medicine, and she completed her specialty training at Columbia University Medical Center.
I usually recommend a baseline mammogram anywhere between 35 and 40 years old, and then an annual mammogram Following that, there are some societies that say possibly you can go every 2 years in your 40s and then annually starting 50, but I usually like to do an annual starting at age 40.
So you like to actually get a baseline at 35?
Somewhere between 35 and 40.
Dr.
Gade also recommends seeking out a radiologist who has specialty training with a fellowship in women's imaging or breast imaging. These doctors are super specialized in interpreting these mammograms and associated studies. I know that you had quite a journey.
Yes, interesting.
At one point you found out that you were positive for the BRCA gene.
BRCA is one of many hereditary conditions, a mutation you could say, that you inherit that makes you more predisposed to certain cancers. In BRCA1, which I tested positive for, I am more prone to breast and ovarian cancer. And there's also BRCA2 and a number of other mutations for breast cancer that have been discovered since I was diagnosed.
Really BRCA, right?
Right, BRCA1, which is a specific deletion of this gene, which basically makes you not have as much of a defense in fighting cancers.
I know that some people test for it if they have a family history, but you actually didn't have— did you have a family history of breast cancer?
Well, the funny thing is I'm a doctor, so you would think I would know my family history in detail, but I guess I didn't, or my mother never even told me. I really was only aware of a cousin that had ovarian cancer My mom answered some questions that led them to suggest to her that she should have genetic testing.
You were a little bit surprised that they had tested her.
Right. My mom was about 80 years old, so— so I thought it was a little crazy. I kind of yelled at her when she told me. I said, "What are you doing? You're 80 years old. Why are you getting tested for genetic diseases? What are you going to do at your age?" And she was perfectly healthy. She never had any cancers.
Your mom was 80 and never had any cancer?
No breast cancer? Nothing, nothing.
Very nothing. So now if you had a patient who is 80 years old, would you recommend getting tested?
No, no, I wouldn't unless there was a reason, you know, for her to see about. Sometimes you do test older people just to see if they carry a gene, so if their children have to be concerned about it.
I see.
Okay, so this came as a huge surprise then.
Right, she had told me there were other family members who had breast cancer, unbeknownst to me, that did come out later, so I do understand why they tested her. But anyway, I was surprised and obviously I was even shocked that she came back positive. So it was very much a shock.
What was running through your mind when your mom calls you and says, "Nancy, I tested positive for the BRCA gene." Right.
Well, I knew right away I had to get tested. I knew I had to get tested.
And why is that?
Because it is a gene that can be passed on. To your children, 50/50 chance if your parent has it that you'll have it as well and that you can pass it on to your children. You have to do really a statistical analysis, you could say, and, you know, the risk is a lot different, you know, if you're 30 than if you're 70.
So if you're 30 and you test positive for the BRCA gene, your risk is much higher?
More years left to be at risk.
Then you have many more years to develop a cancer.
Right.
Okay. You find out and you're in shock and you're yelling at your mother.
Right.
What are you yelling at her?
I yelled at her, you know, "Why did you get tested? You're 80 years old." And obviously I was angry because now I had to deal with this, with this gene, you know, and had to figure out whether I had it or not. You know, it was a little denial there, you could say.
So you almost felt like, "If I hadn't known, I would just go about my life." Right, right.
Sometimes you just don't want to know. But now I had to know. I mean, I guess there are some people who don't want to know and wouldn't care and still wouldn't get tested, and I do have patients like that who don't want to know, but I'm not one of those people.
Being a mom and a physician, right, you felt like, first of all, you had no time to deal with this, right? So that's why you were angry. And second of all, you felt obligated to get tested, not only for yourself because you want to be healthy and prevent yourself from getting sick, but also because you wanted to make sure that you couldn't pass it on to your daughter.
I mean, that's a big part of it. I wanted to know if I had to deal with this with my children.
And how would it affect your son?
Men, uh, do have an increased risk of prostate cancer and breast cancer also, but of course the risk is a lot less than with, with in women, but they do have increased risk of these cancers.
Initial reaction is, why, why did you get tested? And then you kind of settle into it and you decide you have to get tested. So where did you go from there? Where, who did you go to?
I went to a genetic counselor at NYU Hospital.
Okay.
And they're very good. I think I do recommend people go to one rather than just, you know, do the testing themselves because They do explain to you the risks of being tested, you know, and the ramifications, what it means, and also how it could affect things like life insurance and health insurance. So these are things a lot of people don't think about, but once the information is out there, you don't know who really, you know, can get a hold of it. So you have to just— you have to be aware of legal ramifications also.
Wow, that's interesting. I never even thought about that.
Yeah, I have some patients who won't get tested for that reason.
So basically you want to protect your genetic information, right? So like a lot of people are actually sending away for those kits these days.
Right, you can do anonymous. Some people do anonymous, but then of course insurance won't cover it. But a lot of these kits are cheap nowadays, so that's why a lot of people do it that way.
That's a great point. So how long was it between the time that your mom told you and then you went and saw the genetic counselor?
Probably within weeks, I think. I went, I went pretty soon. Then it was a good 6 weeks wait, 4 to 6 weeks you have to wait for these results.
Wow.
Yeah, that's not fun.
Wait, so is it a blood test?
It can be, but I did a saliva test. You can do either.
A lot of people do both. Are they both accurate?
Mm-hmm. Yeah, they're both just as accurate.
And then did she do it right there or did you have to come back?
No, I did it, we did it right there. You have to swish around a solution in your mouth and then spit it into a cup. Or I know the home test ones also you can use saliva, you can just like spit into a cup, so it's pretty easy.
After that though, you have to wait 6 weeks.
Right.
What are the circumstances where you would say don't, you don't have to do it?
Yeah, I think if somebody was elderly, if they found out their elderly sister was, say, BRCA positive, and then it wouldn't affect anybody below her, you know, it would just affect the point patient, say, and if she had no children, then I would say she doesn't have to get tested. You don't always have to test every single person in the family, but obviously you want to test the person, you know, below them, uh-huh, to get tested. So, you know, say I was negative, then I don't have to test my children. I think I kind of mostly expected it, just because, not that it's scientific, but I always felt like I took after my mother, so I just figured You just had a feeling? Right, I just had a feeling that—
But you had 50/50 scientifically.
Right, right, scientifically it's 50/50, but I guess I wasn't surprised when she called me and told me I was positive.
Wow.
Yeah.
What was going through your mind when you got that news?
I don't remember, um, I don't remember crying. I don't think I did.
But you also knew that you had made it through, uh, your younger years.
Right, I was lucky. I was actually I mean, I think I'm a fortunate BRCA1-positive person because I had already had children. I knew whatever decisions I made weren't going to affect having a family. It's very sad and much more difficult when somebody who's, say, 30 gets diagnosed. They have to make major life decisions. There is a very high risk of ovarian cancer, so a lot of women elect to get their ovaries out, an oophorectomy.
Basically what you're saying is once you find out that you're positive, you have to make a decision as to whether you want to do prophylactic prevention.
I mean, there's two routes basically, or three routes, I guess you could say.
Okay.
The first route is to just do nothing and go about your regular life.
Okay.
And screening.
Okay.
But that's not very responsible.
And what do you mean by not responsible?
Well, I mean health-wise. Health-wise, to ignore it. If you're not going to do regular screenings, Basically, what do they have for ovarian?
It's hard to screen for ovarian cancer. Right.
There's really no recommendations for ovarian. But I mean, but I mean, not being responsible, just not addressing it. I mean, I think any woman who's diagnosed should see an oncologist who specializes in patients who are BRCA positive because there are specific recommendations depending on your age. And there's different choices you could make. The number one treatment is oophorectomy, or to have your ovaries removed. And obviously that's more than a major decision.
Yeah, and especially if you are, you haven't had your kids yet, or, but now they can freeze your eggs, right? So that's an option.
Yeah, you mean you're talking about freezing eggs, taking out your ovaries?
Just as a tangent to that, I heard that a lot of companies are offering women.
Right.
Did you hear about that?
Yeah. A lot of companies are offering younger women to encourage them to put off having children. They're offering to pay to have their eggs frozen.
Well, that's a whole nother episode. But, but obviously—
That's incredible.
But obviously now it's, it's pretty common.
If you're positive for the BRCA gene or at high risk for breast cancer, Dr.
Gade now describes the ways that you can screen for it?
There is definitely more screening options available and proven for breast cancer. So you can have screening mammograms and ultrasounds along with breast MRI that is recommended for patients who are BRCA positive. Usually people alternate every 6 months, they'll do a mammogram and an ultrasound, and then 6 months later they'll do a breast MRI. It's a lot of testing.
Uh-huh.
It means every 6 months having your breasts undergo these procedures. And then especially with breast MRIs, there are false positives, meaning they see something that's not cancer, but at the time you don't know it's not cancer. They just say they see a little abnormality, and then you have to undergo a breast biopsy.
So as a mammographer, ex-mammographer, I do know that if you are at a higher risk, you're probably at a higher risk of being biopsied for things, right?
Right.
Uh, because they're going to have they're gonna want to biopsy things on you that they might not want to biopsy on other people.
Right, if they see BRCA1 in your, in your history, then they're gonna look closer.
Let's go back to your story. So what happened? What did you decide?
First thing I decided was about the ovaries. I think that was more of a no-brainer because, like I said, I had had my children. I was already under, in menopause. Well, that's another aspect we didn't talk about is that having your ovaries out throws you into instant menopause, which has its own, you know, clinical problems.
And the clinical problems are like heart disease, things like that?
Right, premature osteoporosis, premature heart disease, possible cognitive dysfunction. There's really— there's quite a list that I don't think you can discount. Of course, Ovarian cancer is one of the worst cancers you can get. Ovaries and fallopian tubes, that's pretty much the standard procedure. Although now, actually, I'll just say as an aside, for younger women, there is some more evidence of just getting your fallopian tubes out because they believe that it starts— all the cancer starts in the fallopian tubes. So interesting, there is some research and actually a lot of studies of women just doing the tubes, uh-huh, so they can still have a pregnancy, and then taking the ovaries out later.
So the tubes are what connects the ovary to the uterus, right? For those, right, who don't know the anatomy there.
But I had everything, and there was no reason for me to keep anything, so I had everything.
So that was a no-brainer. How was the recovery?
That was really no problem.
Okay, what do you mean by no problem? You're a pretty stoic person.
It was laparoscopic, so that's—
laparoscopic meaning they put They put a camera in.
They do it through your belly button, you could say, and a couple of other short, small incisions. So I was, you know, about a week I was out of commission, but it wasn't physically—
And then you went right back to work?
Yeah.
How about your breasts? What happened with, what did you decide with that?
That was a more difficult decision.
Because you knew that you had options to screen and maybe prevent cancer.
Right, right. I knew, I talked to a lot of women who were BRCA positive. I think, you know, through friends, through organizations, I met a lot of women and asked them their story. I think that's the best thing, to just gather as much information as you can. I looked online.
Can you tell us some of the better places to look online?
I don't know if I really looked at great places. I mean, to be honest, I'm in the— which I think is helpful, but you have to be careful— I am a member of a lot of Facebook groups, BRCA Sisters.
So even as a physician, you talk to real people who were also diagnosed with—
You know, I did go to help groups, support groups, so at my local hospital.
How many surgeons do you think you interviewed before you chose?
I guess 3 or 4. And then when you see the surgeon, then definitely you want to ask them the questions about how many they've done and their complications.
Oh, so some people might be very, um, you know, shy, right, when they go to a physician. So you actually asked the surgeon, how many of these surgeries do you do and how much— what are the complications you've had? Yeah, you actually said that?
Yeah.
And did they— were they friendly about telling you?
Yeah, they are.
Okay.
Yeah, I know it is something I always tell my patients, you know, ask how many they've done. You don't want someone who, you know, does 10 a year. You want—
and do you ask them like, how many do you do a year? Or like, do you do Yeah, a year.
Yeah, you want to know how many they've done in a year.
What would be the minimum for you and what would be like ideal?
I think he does 100 a year.
Okay, so that was good for you, right?
Okay, right. I mean, some, you know, surgeons just don't have the volume and you want to make sure that's all they do, you know. You don't— you want to make sure like it's not just, you know, part of their repertoire and, you know, they're doing noses and you know, another day, and eyes another day. You know, this is a pretty serious surgery. I'm always interested in where they went to medical school, where they did their training. To me, that's very important.
And what would be a no-no for you?
I guess I'm always suspicious if I don't recognize their school. Also, I guess as physicians, we know where the good training institutions are, so if it's a less-than-stellar place I'm not excited about that.
You can Google top residencies for surgeons, right?
For example, that's true. You want to make sure— I mean, this guy, I was astounded, really. I think I was there for an hour and a half.
Wow. So he spent an hour and a half, and I didn't—
wasn't even signing on. I mean, he really believes in what he does.
So you were cleared for breast cancer though before you went in for your mastectomy? You trusted this surgeon, and you really liked him a lot.
Yeah, I really did. He's Dr. Greenspun at Greenwich Hospital.
Okay, so he was amazing.
Yeah.
And you went through the procedure with him, and how was, how was that for you emotionally?
And knowing that you didn't have cancer, knowing that you were doing this all as a preventative measure, my thinking was that I'd rather go through any surgery then get cancer, have chemotherapy, and then have to worry the rest of my life, is that cancer coming back?
Yeah, because it's a big deal.
Yeah, it's no joke. The surgery is major, and the recovery, you know, took a good month. I mean, mastectomy with implants is much easier. I would say that's about a 2-week recovery. What I did is definitely at least a 4-week on-the-couch recovery.
On the couch?
Well, I was, although I had a patient who did it and and she was up and going much sooner than I was, a couple of weeks.
Was there something different about her lifestyle that you can—
She's a vegan.
She is? She is. Oh wow, for how long?
Oh, for a long, long time.
And is there like a percentage of time where you might get all of these surgeries and you can still end up with cancer?
Oh yeah, I can still get cancer.
Because they can't take out every tiny little dot.
I mean, right, it's not my But it's very low, right?
So very low, almost like less than the general public.
Oh, definitely, yeah.
So you actually have a risk lower than the general public now. Dr. Gede's older sister also decided to get tested, and for her, the results were very surprising.
Well, she also got tested about the same time I did, and she was positive as well. And she also decided to go ahead and have her ovaries out. She went to Memorial Sloan Kettering for her testing, but her pathology actually came back abnormal. Wow. Yeah, I mean, it was right before Thanksgiving, and she told me they called her and said there might be some abnormal cells. So as a physician, I knew that wasn't good. They told her they found cancer cells in the fallopian tube and a few on the ovary. Basically, she had very early stage ovarian cancer. All right, I'm back. No, it's just an emotional thing because it was upsetting, you know. So after she was diagnosed, she had to undergo a full stage— what they call staging operation. Wow. They had to go back in, take out her uterus, all her lymph nodes. So luckily everything was negative except what they had originally found.
And it was literally like just a few hundred cells, right?
Yeah, it was just, you know, microscopic. Nothing that was seen on the scans because she had scans. CA125 was normal, right? If my mom never did the test and we never had the test and we never did the preventative surgery, she probably would have died of ovarian cancer or been diagnosed, you know, stage 3 or 4 like most people are. Yeah.
And so even though you were mad at your mom when she got the test, then we said she saved her life.
Yeah, we forgave her. We forgave her.
So do you think that people should be recommending BRCA testing for 80-year-olds then? Or do you think this is just—
I think people need— I think people, because I think what went wrong in my case, why it turned out to be the fluke, was because my mom really never— I never— maybe I never asked or she never shared all the people in the family that had breast cancer. Because after the fact, she said, "Oh yeah, you know, Aunt This and Aunt That and Grandma, you know, whatever, had breast cancer." And I'm like, "Why?" I was mad also. "Why didn't you ever tell me this?" She never told me. All I heard about was that her cousin had ovarian cancer. That's all she had ever talked about. So an accurate family history would probably have produced the same result. You know, I guess I should have asked. You have to get a history. Your family history is very important.
Anything else you can leave us with?
Just that don't be afraid to get tested. I have patients who refuse to get tested. I think it's a mistake. I mean, I do encourage it, but I can't force them. You know, knowledge is power, I think, at least even if you don't want to go through what I did and go through all that crazy surgery, and people do think I'm crazy.
So you think you went a little over the top as compared to other people, or are you average for somebody who finds out they are BRCA positive?
I don't know what the stats are. I definitely have patients who choose screening.
I don't—
I don't— haven't met too— a lot of people who've done what I've done, but I know they exist because I am part of these groups.
All your surgeons, were they on board with you, or did they say you're going overboard, you don't need this?
Well, that's hard to say because surgeons do what they do.
Okay. They like to operate.
I think you have to get as much data. You know, they recommended the ovaries come out, they all recommended that. As far as breasts, then I think they leave that up to you as far as you could do vigilant screening or you could have surgery.
Okay, and now you get screening for anything or no?
Nothing.
So you don't do anything?
Now there's nothing to screen, there's nothing left to— oh no, actually I have to say you're supposed to get a CA125. I do do a CA125 every year, which, you know, I don't think anybody really knows if that does anything or not, but I do it.
And now your sister, we want to say that she's awesome and well, right? She's totally—
Yes, she did have to undergo chemo. She had to undergo chemo therapy.
Even for those few cells they found.
Right, because they couldn't be certain a few cells didn't escape into her abdominal cavity. So she had to do 6 months of chemo, which was horrible. But she's great, and she goes every 6 months now. She does still see her oncologist, and she gets scans.
Oh, she does?
She does. She gets scans. CA.
What kind of scans?
She gets an abdominal, pelvic, and CAT scan.
CAT scan.
I think they're slowing down though because, you know, the radiation exposure. They used to do it every 6 months, but now I think she's down to once a year or maybe even less.
So in the beginning, after they treated her with surgery and chemo, they wanted to just follow her every 6 months or so, but because CAT scans have radiation themselves and can pose a risk, Now she's down to maybe once a year.
Right, right.
And will she have to do that for the rest of her life?
Um, well, she definitely will, you know, have to be followed for the rest of her life because there is always a chance of recurrence.
Mm-hmm.
So she'll have to be followed, but maybe with just the blood test, you know, every 6 months.
And for now, all we have is the CA125.
Right.
First, you have to have the knowledge, which will give you the power to choose what you want for yourself and your family. And then you have to be courageous enough to choose that road. See, everybody has that kind of procrastination anxiety around medical tests.
You know, every year there's new treatments coming out, new prevention strategies. There may be even gene therapy to correct the deleterious gene in the future. Wow. So you never know. So it's better to know than not know, in my opinion.
Totally happy, 100%, no regrets?
Totally, totally. I don't have any regrets.
No. Okay, thank you so much for sharing your story.
You're welcome.
Amazing.
It's great to be here with you today.
And we're gonna be hearing more from Dr. Gayed in future episodes.
Stay tuned.
That was Dr. Nancy Gade. You can find her at her medical practice in Wilton, Connecticut, where she is a concierge physician who focuses on her passion for personalized whole patient care and even makes house calls. Dr. Gade stayed well by continuing all of her exercise routines, weightlifting and aerobics at the gym, ballet in the studio—yes, you heard right, adult ballet—right up until the surgery. She ate healthy home-cooked meals and used positive expectations, psyching herself up with the mantra that "all will be fine." Dr. Gade feels that her positive expectations and attitude were really important and that the trust that she had in her doctors were key in improving her outcome. For her, the recovery was the most challenging part because she had pain which triggered worries about healing. She took pain medications when necessary, but she thinks that meditation would have been very helpful in addition to the medication. She's been meditating regularly now with her two favorite apps, Insight Timer and Simple Habit. You can also find meditations on our website, chillpillformoms.com.
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