A Breast Oncologist, Diagnosed With The Disease After a routine mammogram, breast cancer specialist Dr. Marisa Weiss was diagnosed with a breast tumor. The founder of breastcancer.org discusses her diagnosis and treatment.

A Breast Oncologist, Diagnosed With The Disease

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This is FRESH AIR. Im Terry Gross.

Dr. Marisa Weiss is one of the go-to doctors for women diagnosed with breast cancer. She's the author of "Living Well Beyond Breast Cancer," and is the founder of Breastcancer.org, a popular breast-cancer resource website. She's a breast oncologist at Lankenau Hospital in the Philadelphia area.

Last spring, after getting her annual mammogram, Dr. Weiss was diagnosed with breast cancer. After taking time off for treatment, she returned to her practice. We invited her to talk about what she describes as having dual citizenship - as a doctor and a patient.

Dr. Marisa Weiss, welcome to FRESH AIR. So let me just start by asking you: How is your health now?

Dr. MARISA WEISS (Oncologist, Lankenau Hospital; Founder, Breastcancer.org): I actually feel better now than I did before I was diagnosed. You know, I've sort of learned - had to learn how to take care of myself in the same way that I've prescribed to my patients over the 20 years that I've been in practice. And I've really focused on not just what the doctors have told me to do - and I've done that - but also on what I'm doing in my everyday life, you know: what I'm eating, what I'm drinking, what I'm breathing in, the personal products I'm using - from, you know, the kitchen cabinet to the bathroom shelves, to the cleaning supplies. And I've, you know, had to get my act together in a number of different ways. And with all that work, there's been a big return on investment. And I feel a lot better.

GROSS: So you are surrounded by people who have breast cancer - because you're an oncologist who treats women with breast cancer. So did you worry, before getting it yourself, that you would get it? Because you see it all the time; it's so business as usual for you.

Dr. WEISS: Right. I mean, breast cancer is basically my whole life. Many people in my family have had it.

GROSS: Your mother has it.

Dr. WEISS: My mother has had it. My aunt just passed away, actually, from it this past spring.

GROSS: Sorry to hear that.

Dr. WEISS: Yeah. I have relatives I have never met who had it, who I've heard stories about. I have taken care of thousands of women. And then through Breast Cancer.org, there are 10 million people that come to us, that I feel like I have a relationship with, over the years. And yes, I was always concerned and aware it could happen to me. I never thought that I would get a free pass because I've been a good girl and, you know, worked hard to help other people, and that that somehow would magically protect me. But when it happened to me, it was a shock because, you know, I was a very busy person and during a very busy day like anybody else, I had to break away from my schedule to race up to the mammography department, take the white coat off, all the clothes off, waist up off, wait in that gown, wait to be called. And I thought it was just going to be like any other year, where I would get the films; they would call me back for a few extra pictures - as they always do - and then they would say, good, everything looks great; catch up to you next year. But that didn't happen this year. So...

GROSS: You give the news all the time to your patients. What was it like to get the news?

Dr. WEISS: Well, the news didn't come all at one time. It started with: I see some changes on the mammogram that are worrisome. So I said: Well, how worried are you? The radiologist said: I'm pretty worried. So right away, I knew that there was a change that was significant, and that those words were serious words. And then I had to come back, and I was lucky to get an appointment to come back the next day, for extra pictures - so extra mammogram pictures to zero in on the area that they were concerned about - and ultrasound. And each of those tests showed more reason for worry and concern. Then I had to race out of the hospital to be the keynote speaker for a luncheon of 400 women an hour away, and then drive back for...

GROSS: About breast cancer, no doubt.

Dr. WEISS: About breast cancer, of course. That's, as I said, is my life...

GROSS: Your life.

Dr. WEISS: ...and for my MRI scan at the end of the day. And after that test, I came out and looked at the faces of the radiology technicians who operate the machines, and they wouldnt look at me. They were just avoiding my glance. So I knew then it was, you know, it was serious. And then I went from there to the radiology reading room, and met with the radiologist who was going to - who pulled the MRI images fresh up on the screen. And like a light bulb, there it was, this tumor in my left breast that was clearly, a cancer. And while it hadn't yet been biopsied, I've been doing those for so long; I knew I had breast cancer. And that was a really tough weekend because that was a Friday night and the weekend, I spent with my son. And I wasn't really able to share anything with him because I didn't want to upset him unnecessarily in case, perhaps, it may not be cancer.

GROSS: So with all this evidence, the different tests that you had taken together, what did you learn about your breast cancer that you might not have been able to learn had you been diagnosed - say, 15 years ago?

Dr. WEISS: Well, what is amazing to me is that we have had advances in many different specialties in breast-cancer treatment and diagnosis that are teamed up with better detection. So I had the benefit of early detection with mammography. And because it was found early, I also was able to take advantage of a new test called the Oncotype DX test, which is like an FBI report on the proteins and genes that turn on and turn off breast-cancer cell growth, and also make the breast cancer able to invade normal tissue and spread to other parts of the body.

So I got that test result, and it showed that my risk of having distant recurrence 10 years from now was low. And because of the result of that test, I was able to avoid chemotherapy and instead, have hormonal therapy, medicines that block the effects of estrogen on breast cells. The medicine's called tamoxifen - in my situation; there are many different kinds of medicines in that category. So I feel that I benefited from early detection in more ways than one. I had an earlier diagnosis, a better prognosis, and also was able to avoid treatments that could have had significant side effects, both immediate as well as lingering, in the future.

GROSS: So was there a part of you that was saying, even though the analysis of my tumor says that it's not the kind of tumor that's likely to recur or spread - do I have that right? - and therefore, you know, you don't have to do the chemo or the radiation; surgery should be sufficient; was there a little voice in your head saying, but just in case, just in case, maybe I should do the chemo, or maybe I should do the radiation? Because I've certainly heard women say that, you know, they probably don't need it but they were urged, just in case, go through those treatments.

Dr. WEISS: Right. I mean, we have this human-nature tendency to think that more is better. But for me, my greatest benefit was going to come from hormonal therapy, not chemotherapy. And I know that the type of cancer I have is the kind that can recur much later, not just within the first five years, but even 10 years or 15 years. So I need long-term protection. So I've had to get very serious about making sure I'm as healthy as possible, and that I don't expose myself to outside hormones or chemicals that can act like hormones and address sort of my internal environment, and make that as healthy as possible.

So, for example, I got my weight down. I lost 13 pounds, and try to stick to it. I limit the amount of alcohol I drink to five or fewer drinks per week. I usually stick to two or three drinks, or fewer, per week because those two things are closely associated with breast-cancer risk and breast-cancer recurrence. I've never smoked, but I also stay even further away from people who smoke. I make sure that I have hormone-free sources of beef or dairy products. I avoid any foods that have - that are heavily treated with pesticides, like apples, peaches, celery, bell peppers, any kind of berries - because some of those pesticides can act like, taste like, smell like estrogen to your breast cells on the inside. I'm also very careful about trying to exercise three or four hours a week - something I don't really like doing - which takes a lot of discipline.

GROSS: I know obesity might be a factor, but you're quite slim. Why did you feel you needed to lose weight?

Dr. WEISS: Well, I was overweight when I was diagnosed - only somewhat overweight, but obesity is connected to a higher risk of breast cancer because the extra fat makes extra hormones. Also, a lot of the chemicals in the environment that can act like estrogen, they dissolve in fat and your body can harbor them. And people who are overweight tend to be less physically active and eat less nutritious food. And it's also true that there's some interaction. So when overweight women drink alcohol, there's more of an effect than when thin women drink alcohol. So I knew that managing my weight, something I've struggled with my whole life, was something I had to really get real about -get to a healthy weight and stick to it, and change my life in order to make that happen.

GROSS: So you're talking about avoiding anything that behaves in the body like estrogen does, because your kind of breast cancer feeds on estrogen.

Dr. WEISS: That's right.

GROSS: So we've been hearing for years that the hormonal treatments, the estrogen treatments that were supposed to help women through menopause, and help stave off memory loss and be good for the heart, actually can feed breast-cancer cells and make you more prone to breast cancer. And there's a new study that says not only that, but it can create a more aggressive form of breast cancer - and stop me if I'm getting any of this wrong.

Dr. WEISS: No, it's exactly right.

GROSS: Yeah.

Dr. WEISS: It's like fertilizer. So basically, when you take pharmaceutical estrogens from the outside environment into your inside environment, inside your body, you're basically marinating your cells in a substance that's going to promote its growth. So breast cells are very responsive to hormones as well as medications or chemicals that can act like hormones. And when you are constantly being marinated in a mix that contains hormone-replacement therapy, the cells can become overactive and become cancer cells. And so that study, the recent study, shows that women are at a higher risk for getting breast cancer, and breast cancer that's more aggressive, that's gone to lymph nodes. So the paper really asks doctors and patients to have a conversation about this and say, you know what? Maybe it's time to get off of hormone-replacement therapy, re-evaluate what symptoms you might have, find safer effective remedies for managing postmenopausal symptoms - like hot flashes or dryness, and things like that.

GROSS: Did you have to decide whether or not to tell your patients that you were diagnosed with breast cancer, the same thing you were treating them for?

Dr. WEISS: Yes. It was very difficult to figure out exactly how I disclose my own diagnosis to my patients, because I didn't want them worrying about me when the reason why we're meeting is to take care of them.

GROSS: And also worrying that you are not going to be their doctor...

Dr. WEISS: And...

GROSS: And maybe you'll decide to leave.

Dr. WEISS: Right.

GROSS: Maybe it'll be just too much stress, too much time.

Dr. WEISS: Right. You know, there was...

GROSS: Maybe you won't be well enough. Yeah.

Dr. WEISS: Yeah. No, I think all those concerns weighed on their minds. So in my usual style of being open, I was upfront. I let the people know who were under treatment at that time that I was going to have a medical procedure, and I was going to be out for the week, and that I expected to be back soon and I expected to be, you know, fully able and competent to be their doctor - and that while I was away, there would be full coverage. And then when I came back, you know, they were asking me well, are you OK? And what happened? And I said: Thank you for your concern. I was diagnosed with an early stage breast cancer, and I have...

GROSS: So it was only after you came back, you revealed that.

Dr. WEISS: We decided it was best to share the information in stages and not overwhelm them with too much information at one time, particularly when I, myself, needed the privacy. I needed - and didn't have all the answers.

GROSS: Right.

Dr. WEISS: So I divulged as much as I thought I could share that was reasonable and - knowing that we would continue the conversation when new information became available.

GROSS: How did they take it?

Dr. WEISS: I have gotten tremendous support from my patients. They've expressed, you know, true compassion. I've gotten beautiful letters and phone calls. It made a big difference to me and I've, you know - very grateful to that.

GROSS: My guest is Dr. Marisa Weiss, a breast cancer oncologist and the founder of Breastcancer.org. She was diagnosed with breast cancer last spring.

More after a break.

This is FRESH AIR.

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GROSS: My guest is Dr. Marisa Weiss, a breast cancer oncologist and the founder of Breastcancer.org. She was diagnosed with breast cancer last spring.

So one of the things you're concerned about is not exposing yourself to environmental hazards and to certain, you know, products that you think can have an estrogen-like effect in your body. And you are in the process of writing a book about environmental issues that might increase risk of breast cancer or breast-cancer recurrence. So let's run through some of your specific concerns about that. I don't know if you - want to start with food?

Dr. WEISS: Well, let me just say that breast cancer used to be pretty uncommon about a hundred years ago. And what's happened is that the breast has become the favorite place for cancer to occur, in this day and age.

GROSS: And we all know people - I think I can say this and speak for everybody - that we all know people who have had breast cancer. So what are some of the explanations of why the breast has become the favorite location for cancer?

Dr. WEISS: Well, most people think it is all about family history and genes you may have inherited from your family. But actually, the breast-cancer genes only explain 5 to 10 percent of breast-cancer cases today. And those are ancient, stable abnormalities. They haven't changed. But what has changed over the years, that explains why the breast has become the favorite place for cancer to occur, are changes in our outside environment and our body's inside environment.

So in terms of the inside environment, with obesity making extra inside hormones that can influence breast-cell growth - it also triggers more insulin growth factor - more women are drinking alcohol; more women have not stopped smoking - they've started, but they haven't stopped as quickly as men have - we lead very stressful lives; we don't sleep enough; we're running ourselves ragged; we're not giving our bodies a chance to heal from the wear and tear of everyday living - from the outside environment we bring into our body's inside environment, what we're - the food, for example. The most commonly grown crops today, corn and soy, are grown with Atrazine and Roundup. Atrazine can turn on your...

GROSS: What is Atrazine?

Dr. WEISS: Atrazine is an herbicide. It's a weed killer that's used to grow corn. Roundup is a weed killer used to grow soy. Those seeds are genetically modified to grow in the presence of those chemicals. But we haven't been genetically modified to withstand the side effects of Atrazine and Roundup.

Atrazine can stimulate the production of estrogen in your body by turning on the aromatase enzyme. And Roundup is a hormone disruptor. It can kind of rock the boat and mess up the balances of hormones in your body. But all these chemicals, you know, they are used in agriculture or industry. They can get into the food that we eat, the water we drink. And they can have an influence -an unhealthy influence - on our breast cells.

GROSS: Why breast cells, and why not different parts of the body?

Dr. WEISS: Well, actually the breast is a very unique organ. It is the only organ to fully essentially, fully form after you've been born. All the other organs - and including the very beginning of the breast tissue - is formed during the first three months of pregnancy. And during that time, of course, the breast cells are exquisitely sensitive to any kind of genetic insult as they are building themselves. But then, the breast is the only organ in the body to actually fully form, and over a 10-year period of time - from ages 8 to 18, and into your 20s - and that is when what you're eating, drinking, breathing in and using are the actual building blocks. And that's when you're laying down the foundation of your future breast health.

So for example, exposures to DES when you're building your breast tissue in utero produce a higher risk of breast cancer - in the mothers as well as the daughters - later in life. Bestinal A can have a permanent effect on the way the breast is formed if you're exposed to it in utero, or later on during breast development. So that's one unique thing about the breast.

Also, the estrogen receptor that runs operations in most breast cells is like a sponge for all of these different chemicals. While it has a monogamous relationship with estrogen, it is ready to respond - and is quite promiscuous -when it comes to all these other chemicals. And they can turn on breast-cell growth.

And what has also happened is that girls are going through breast development way earlier. For African-American girls, it can start as early as, you know, age 8 -7 or 8. For white girls, it's around age 10. For Latino girls, it's like 9 and a half. And then as soon as the breasts are made, they're ready to respond to these chemicals. And the breast cells remain quite immature and overactive until the first full-term pregnancy - which is the first time in the life of the breast when the breast is forced to actually fully grow up, get its act together, and get a job - breastfeeding.

And what's happened today is that breast development is happening earlier and earlier, and many women are delaying having their first full-term pregnancy - or not having children at all, or are not breastfeeding. And during that long stretch, the breast cells are immature and very responsive to outside chemicals you may bring into your inside environment. Those combination of reasons explain, largely, why breast cancer has become the most common cancer to affect women.

GROSS: So I know before you actually had your breast surgery, you got photographed so that you'd have a photo of your intact breast.

Dr. WEISS: Mm-hmm.

GROSS: What have you done with the photograph, and do you ever look at it?

Dr. WEISS: Well, a friend of mine called me before my surgery, and she said: Take a picture of them. And I said, why? And she goes: You want to remember them, you know, the way they are now. So I asked my husband and he said no, I don't want to do that. So I called my sister and she said oh, there's a place called PinkKitti.com. And I called them and they said, we're having a special.

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Dr. WEISS: So I decided that I was going to do it. I was so happy that I did because it sort of captured the moment. It was fun. It took the edge off my anxiety going into surgery. They put me up against a very cold exterior wall, and my breast went right up to their - the original position, just - and they looked fabulous when the picture was taken. So I will remember them that way, and I was really pleased that I had done that. It was a lot of fun. And I haven't done anything with the photographs, but I have them sort of tucked away for a sneak peek whenever I want to, you know, remember them in their glory.

GROSS: Dr. Weiss, thank you so much for talking with us.

Dr. WEISS: Thank you for having me.

GROSS: Dr. Marisa Weiss is the founder of Breastcancer.org, and the author of "Living Well Beyond Breast Cancer." She was diagnosed with breast cancer last spring.

Coming up, we remember Richard Holbrooke.

This is FRESH AIR.

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