Fresh Air Covers Cancer: How Patients Can Take Control of their Fight Against the Disease.

Show: FRESH AIR
Date: FEBRUARY 17, 1999
Time: 12:00
Tran: 021701np.217
Type: FEATURE
Head: Laura Landro
Sect: News; Domestic
Time: 12:06

TERRY GROSS, HOST: This is FRESH AIR. I'm Terry Gross.

Today we're continuing our series on cancer. When you're diagnosed with cancer you may know very little about the disease. In order to make intelligent decisions you need to understand what your options are, and that requires research.

The research may be just about the last thing you feel like doing when you're feeling ill and you've just gotten a diagnosis that is turning your world upside down. My guest Laura Landro has been through this.

In 1991, at the age of 37 when she was a reporter at the "Wall Street Journal," she was diagnosed with CML -- chronic myelogenous leukemia -- a form of blood cancer that kills many of its victims within one to five years. Landro decided to use her journalistic skills to arm herself with information so she could make informed choices.

She ultimately decided to risk a radical approach, bone marrow transplant. The treatment is potentially fatal, but it's the only known cure for CML. Landro has written a new book called, "Survivor: Taking Control of Your Fight Against Cancer."

I asked her where she began her research.

LAURA LANDRO, AUTHOR, "SURVIVOR: TAKING CONTROL OF YOUR FIGHT AGAINST CANCER": Well, I think in everybody's life you have to kind of look around and say, OK, what are my resources? Now, obviously in my case I was a journalist. I was trained to investigate, and I had a lot of friends and colleagues who were in a position to help me out.

So you basically kind of network with everyone you know who might be able to help you. I had a fellow journalist who knew about medical writing. My mother was a nurse. And I had a friend who was a scientist with access to the "medline" which was the online resources of the National Institutes of Health.

You have to remember in 1991, when I was diagnosed, the Internet was just still out there in ether. Most people weren't even aware of it, and it wasn't being widely used. So you couldn't just go online the way you can today.

GROSS: So you did a lot of your research in print.

LANDRO: In print, yes. Reading things -- now, remember I have -- as the "Wall Street Journal," my employer, had an Internet -- not Internet, but a news retrieval -- an electronic news retrieval, like Nexis or Lexis which many people have access to through their employer or at a local public library -- has access to a lot of the lay press writings about leukemia.

You can also do things like go to a medical library, but in my case I turned first to journalism. I turned to what has been written about this that I might learn something from.

GROSS: Did you find out useful things that were helpful?

LANDRO: Yes, I did. First of all, you have to remember I started, as most people do, from ground zero -- from total ignorance. I was an educated person, but I didn't even know what leukemia really was. I don't think I paid that much attention in biology class.

I didn't know that bone marrow was connected to blood and that because there was a problem in my bone marrow my blood cells were being, you know, replicated at crazy rates. I had to educate myself on the basic science of what was happening to me in order to understand what my options were for treatment, and what different things I might have to consider.

And that's what I would recommend that most people do. You know, you do -- it's scary to think what's happened to your body, but you have to try to understand, basically, the basic science of your cancer.

GROSS: Now there were times when you called experts in the field -- doctors in the field -- to get their advice and have them share their knowledge.

LANDRO: Yes.

GROSS: What are the ethics of doing that when somebody isn't your doctor and you don't have a preexisting relationship with them? If they're like the top guy in the field can you just like call them up and ask them for advice?

LANDRO: Well, surprisingly most people don't think you can, but I found that you can. And I did not say "oh, I'm a journalist," in most cases. What I did was I also read many of the medical studies. And what I would do is look at the people on the medical studies and say, "OK, I'm going to call this guy up."

And I think often times -- it's like anything as a journalist, you're used to calling people who don't really know you or want to talk to you and ask you impertinent questions. But they, mostly, were surprised to hear from a lay person or a patient, but once they found out that you had read their research or that you were aware of their work, in many cases they were willing to give me some time on the phone as long as I kept on point and said, "look, here's what I need from you. I've looked at your research. I'm considering your hospital."

I think that the formal relationships that people think they have with doctors where they have to make an appointment and they have to sit down and talk to them, you know, you can't allow that to be a barrier to just trying to reach somebody. Nowadays you can e-mail some of these doctors. You can go on a hospital's Web site and find the e-mail address of the doctor. Call them directly, e-mail them.

More and more I think the medical community is getting used to this and becoming more responsive. It doesn't always work, but I think you have to give it a shot.

GROSS: Now there were times when you actually called a doctor for information. The time I'm thinking of specifically was your doctor. And you told him it was an emergency. You told his answering service it was an emergency. He got back to you, and it turned out what you were looking for was information. You weren't in an emergency health crisis at that moment.

LANDRO: Right.

GROSS: And he was kind of irritated with you. He said, "you said this was an emergency."

LANDRO: Right. I think I used the word "urgent." That it was urgent. Because I was getting down to the wire where I had to make a decision about where I was going to go, what I was going to do. I had leukemia and I was lucky enough to have a brother -- two brothers -- who were identical sibling matches. And I had decided to have a bone marrow transplant, but what I was researching was different techniques for doing bone marrow transplantation.

The hospital that I was being treated at was doing one thing, and all the other hospitals were doing something else altogether. So I was looking at things like long-term survival rates, what were the relapse rates? Who was alive and disease free after treatment at these various hospitals.

And I was hoping to use that as a guide for what was the best treatment. What was the best technique for my bone marrow transplant. And I had a bunch of questions about their results because they weren't very good. And I had to make a decision. So I did say it was urgent, and yes, he was very upset with me.

Ultimately, I said to the hospital that I didn't want to see that doctor anymore. I basically fired that doctor, which I think people are -- it's another thing people think you can't do but you can do it. And I moved on to another doctor in the same hospital. But even though he was a nicer guy, he couldn't make those statistics look any better and he couldn't make their results look any better.

So ultimately I traveled, you know, after a lot more research, 3,000 miles away to seek treatment at the Fred Hutchinson Cancer Center in Seattle, Washington. And I'm a New Yorker, so that was a big decision.

GROSS: Now let me back up a second. You said you decided to fire your doctor. What were the reasons why you decided to change doctors, and how did you tell your doctor that you were leaving him for somebody else?

LANDRO: Well, again, I was being treated at a bone marrow transplant unit, and I -- you are assigned to a member of a team. There's teams of doctors, often, in a cancer treatment center. And though the results were primarily what led me to reject the hospital, I found the hospital to be very cold. I found it to be not responsive to patients. I found the doctor to be brusk, impatient, unwilling to answer questions, not particularly able to take the kind of criticisms that I was leveling at their work, and it was the unresponsiveness.

I think one of the things you have to do as a cancer patient is you have to have a gut feeling about someone that they are there to help you. That they're, you know, your life is in their hands and that they -- together you can work as team to figure out how to save your life. And I did not have that feeling about this doctor. And I said I can't go on like this. So I simply asked the hospital's higher-ups to assign me to a different member of the team.

GROSS: You needed a bone marrow transplant, and you had to decide which hospital to go for it, and this was back in 1991 when bone marrow transplants were even more experimental. Were you able to actually visit different hospitals, meet with the staff, take a tour. Were hospitals willing to do that for you?

LANDRO: Absolutely. I mean, they were more than willing to do it. I looked at several hospitals. First I did the research. Before I went and just looked at hospitals I did the research. I looked at the various survival rates. The success rates with bone marrow transplants. And I think, as a patient, that's what you have to do.

You have to focus in on what your disease is. Find out what hospital is doing the best work. Who's been doing it the longest. Who has the most experience. Who has the best long-term disease free survival rates, which means patients who have had the treatment who are alive and have not relapsed.

And that's what I looked at. And I narrowed it down to three or four hospitals. Some of them I talked to by telephone. Three of them I visited. And in the end, the one I selected was the one not only where I felt the most comfortable with the doctors and with the hospital staff, but the one that had for my disease the best long-term disease free survival rates.

And of course, statistics aren't going to guarantee what happens to you, but they can give you some idea of what your odds are.

GROSS: Was it hard to find those statistics?

LANDRO: Well, it's hard if you don't do the homework. Today you can find a lot of what I found on the Internet by going into some of the medical libraries. But the fact is, you know, you don't even have to go that far. Hospitals have to provide that for you. Most people simply never think to ask.

If you say to a doctor, I want to see -- I want to see the latest papers that you've published. Because obviously, remember, a lot of these places are teaching hospitals -- to keep their grants up they have to keep continue to publish results, publish their data. And you simply ask for it and they give it to you. They can't say no. It's just, again, patients don't think to ask.

GROSS: Now you decided to go to the West coast, although you're a New Yorker.

LANDRO: Right.

GROSS: For your bone marrow transplant. It's kind of scary to go that far away from home and to drag your family that far away from their homes. Especially when it was a long-term treatment. I mean, you were there for about a year.

LANDRO: Well, no, I was actually there -- it seemed like a year, but from the time I was diagnosed to the time I was done with the transplant and I went back and forth, but I was actually in Seattle, Washington for four months. From the time I entered as an outpatient hospital for almost two months, and then a month of outpatient recovery.

GROSS: So that's a long time for a family to live in hotels while you're in the hospital.

LANDRO: Yeah. We lived in one of those Marriott Residence Inns. They had special rates. I mean, in most of these hospitals where there's long-term treatment there are places like social work offices that help people find local housing.

We were fortunate to be able to stay in a residence hotel, but there are apartments. There are homes for rent. There are many hospitals now where people have built apartments, you know, short term stays around them.

So it's difficult. It's a financial burden. But my family basically got together and said, look, this is the chance to save Laura's life -- we're just going to sacrifice what we have to. Most of the employers were willing to give my brothers and my mother, who was a nurse and was my caregiver, they gave her a leave of absence from work.

You know, you've got the family -- things like the Americans Family Medical Leave Act which allows people to take time off to care for sick people. There are resources. There is financial help out there. When you have to do it, this is your one shot, I think you have to not say I can't go far from home. You have to do that, and that's what we did.

GROSS: My guest is Laura Landro. Her new book is called "Survivor: Taking Control of Your Fight Against Cancer." We'll talk more after a break.

This is FRESH AIR.

BREAK

GROSS: My guest is Laura Landro. Her new book is called "Survivor: Taking Control of Your Fight Against Cancer." She used her skills as a journalist to research her deadly form of blood cancer and make informed choices about treatment. Landro is an editor at the "Wall Street Journal."

Laura, give us a brief description of what bone marrow transplant is like.

LANDRO: Well, a bone marrow transplant -- basically what they are doing is they are destroying your bone marrow and your immune system with a combination of chemotherapy and radiation or chemo. And you're getting near lethal doses of chemotherapy and radiation in some cases.

Some people have described the kind of radiation that you get as like being at the epicenter of a nuclear bomb. So what they do is they totally destroy your immune system and your bone marrow with the idea of eradicating the disease that's in the marrow, and injecting this new bone marrow either from a sibling donor or from an unrelated match donor. And that marrow, it's kind of miraculous, it finds its way into your bones through a blood transfusion.

It's not -- when I first heard about it I thought they were going to have to drill holes in my bones to get it out and get it back in again. But they get it into a blood transfusion in this little two liters of marrow from your donor, which they can easily spare, finds its way in to your new bone cavities and begins really growing a whole new immune system. Making new blood cells. Making disease free blood and bone marrow for you.

And in many cases completely eradicates this disease, you know, CML which I had. And they're showing that it also has great effectiveness in breast cancer and it has promise for things like ovarian cancer. It's an amazing technique, and of course now there are things like stem cell transplants, cord blood transplants. It's basically giving you a whole new immune system.

GROSS: After suffering through the effects of chemo and radiation, your immune system is killed and then you're just a sitting duck for every opportunistic infection known to man. And you had many of them.

LANDRO: Exactly right. And the real danger for transplant patients is after the successful transplant where they get the marrow into you, and assuming your body doesn't instantly reject it. What you then have to do is sit around for anywhere from a month to two months and wait for those things to start happening.

Wait for the new blood cells to be produced. Wait for your platelets to come back up again. And in that time, because your immune system has been destroyed -- they tell you it's like we're going to give you AIDS, but you'll get your immune system back again.

You are susceptible to every kind of bacterial fungal infection. There are things inside you that have -- immunity has been destroyed so you can have an pneumonia inside you and the immunity is destroyed, and it comes out and there's nothing they can do about it.

A lot of patients fall victim to something called "citomegla virus" (ph) which is a form of pneumonia. And you really are in danger, but again, they give you many prophylactic drugs. You're taking 50 different antibacterial or antifungal, antiviral agents, and they are monitoring you very carefully.

But, yes, there's a very good possibility that you could just get an opportunistic infection and the other thing that can happen is that even though the marrow matches, the marrow recognizes that it's in a foreign place, i.e. your body, and the marrow will start a little fight with your body. And that's called "graph versus host disease."

And it's good to have a little because it's fighting off the rest of the leukemia cells, but it can also kill you. So you've got all kinds of risks. But once you are out of the woods on those initial risks you start to basically recover your immune system and you recover your health. And in my case I'm six years out now and there's no sign of that leukemia.

GROSS: This raises another research question for me. Before you had the bone marrow transplant how much did you want to know about how awful it was going to be? About every opportunistic infection that might get to you?

LANDRO: I wanted to know everything.

GROSS: Sometimes you're better off not knowing certain things.

LANDRO: See, I disagree. I think you're better off knowing what you're getting into. Now some -- I think either you have to know or somebody like your caregiver has to know. I think, again, I'm a journalist. I was trained as a journalist. And the more information the better has always been my philosophy.

I feel that knowing what I was getting into, having some idea what I was getting in to, prepared me for it. Although certainly I can tell you, although I've never had a baby, I think it must be like childbirth. You know, you can read all about what it's like, but until you experience something like that you really don't know. You don't know what it's going to be like to have incredible pain or physical trauma until you've had it. But at least it won't completely come as a surprise.

GROSS: You participated in a couple of experimental drug clinical trials. Why did you decide to participate in the trials, and how did you decide to do it?

LANDRO: Well, they gave me some informed consent forms, and they basically said, "look, these are some new drugs that we're trying. We believe that these drugs will lessen your pain, make your transplant more effective. They aren't going to harm you. But we would like to see if we can use you to prove that we're doing these things right."

And I read very carefully what the risks and what the benefits were going to be. And I felt not only that I was doing something which might help me, but I liked the idea of being involved in something that longer-term would improve the science for other patients.

GROSS: But you ended up getting out of both of those programs because you were having bad side effects.

LANDRO: I ended up getting out of one of the programs which was basically the use of a drug that is commonly used for a longer period of time. In other words, instead of taking this drug for six months, if you took it for a year -- two years -- would it be more effective?

And I think, yes, I said I would do it, but I found that the side effects were pretty bad. And I also made a judgment which said, you know what? I think I'm not going to have the problem that this drug corrects for a long term because there were no signs that I was having it.

So I had to make a judgment call. I felt so bad on the drug that I just said, "who needs this?" And fortunately for me I haven't had any bad effects of that.

GROSS: And the other clinical trial? Are you stuck with that one?

LANDRO: The other clinical trial I did stick with. Basically it was less of a clinical trial than it was something that I sought out. It was a different preconditioning therapy. There was a chemotherapy and radiation were the common uses of pre-transplants conditions. In other words, before they gave you a transplant they whacked you with lots of radiation and lots of chemotherapy.

I had been reading literature that said, you know what? The radiation has really tough long-term effects. And in my particular disease, with a matched sibling donor, it didn't look as if the radiation was worth it because they were starting to show that just using certain chemotherapy drugs would have the same effect before the transplant as using both chemo and radiation.

So the bottom line is I said, "you know, I see your experimenting with this and I want to get into that trial." And that was unusual for them, but I really pushed. And they let me into the trial, and then I stuck with it.

GROSS: Are you a very decisive person? I ask this because sometimes if your indecisive and you're doing a lot of research you can be very overwhelmed by information, and then not be able to choose what seems like the most effective course.

LANDRO: I think that is absolutely true. You can be overwhelmed by information. And one thing I want to make very clear is at no time do I ever suggest that anybody does all this by themselves. That they just think that they're going to make a decision.

You're going to make this decision in consultation with your doctor. You are going to make an informed decision and you are going to participate in that decision. But in the end, you do have to rely on the medical community. You do have to the take a leap of faith which says, "OK, doctor I've read all this stuff. We've talked about it." You either believe what that doctor says or you're going to have to find another doctor.

And I think in my case I ended up trusting the doctors that I was going with. But before I was able to have that trust I had to have the information. And that's what I recommend that people do. That they use this as a partnership. That they trust their doctor, but first they're informed.

GROSS: What's the range of reactions you got from your doctors during the course of your illness when they found out how much research you had been doing and how much of a participant you wanted to be in the decision making?

LANDRO: Well, after the one doctor who wasn't too thrilled with it, I will tell you that I had really really good experiences. Because I think most of these doctors -- you can just cut to the chase. You didn't go through all the preliminaries explaining what it laws. I knew what it was. I knew what was wrong with me. I knew what the treatments were.

So we were able to get right down to the brass tacks. And I think in some cases I think they thought I knew a little more than I did. It's like learning a little bit of a foreign language so that you can speak enough to ask directions, and they assume you speak the language. So they start talking a mile a minute and you don't understand a word they say.

I often would tape my conversations with doctors because I knew I was asking the right questions, but I didn't necessarily absorb their answers. And I found that taping and listening again later really enabled me to kind of focus on what they had said and did I really get that while I was frantically taking notes.

So I recommend that people tape conversations with doctors. Usually they don't have any objection to it. And most of them are really happy to meet a patient who knows what they are talking about.

GROSS: Laura Landro is the author of the new book, "Survivor: Taking Control of Your Fight Against Cancer." She's an editor at the "Wall Street Journal." She'll be back in the second half of the show.

I'm Terry Gross, and this is FRESH AIR.

BREAK

GROSS: This is FRESH AIR. I'm Terry Gross.

Back with Laura Landro, an editor at the "Wall Street Journal." When she was diagnosed with a deadly form of blood cancer in 1991 she used her investigative skills to research her illness so she could make informed choices. She ended up having a very risky treatment -- a bone marrow transplant.

She survived the treatment and has been cancer free. Her new book, "Survivor," is about how she researched her illness and made some very difficult decisions.

I know you've kept up with many of the cancer Internet sites. How would you recommend getting started if you want to use the Internet to research cancer?

LANDRO: What I recommend that people do is look for disease oriented menus. If you have, for example, leukemia which is what I had, you can find on the Internet through a basic search engine -- the first 10 things that will be called up will often be some of the patient sponsored sites. Sites where former patients have put together links. They've already done your homework for you.

There's something called "GrannyBarb and Art's Leukemia Links, where these are two former leukemia patients who have already done so much homework, and they've gotten all the medical studies and they're constantly combing through the medical data. You go into their Web site and they will help you. They've guided you already.

There are a lot of e-mail discussion groups where you kind of subscribe to a big bulletin board where people are constantly posting messages who are going through the same thing you are going through.

Some the University medical centers -- the University of Pennsylvania has a wonderful site called "oncolink." You just visit that site and it will link you to things like the National Institutes of Health, the National Cancer Institute, abstracts of papers that have been written recently on treatments.

So you have to do -- you have to spend some time, but there are already some great guidance out that's provided for you by others who have already done this homework.

GROSS: Any other favorite Web sites you want to mention?

LANDRO: Well, I think that the oncolink would be among my favorites.

GROSS: That's the University of Pennsylvania's Web site.

LANDRO: The University of Pennsylvania is a wonderful one. There's something called ACOR -- the Association of Cancer Online Resources -- which will guide you to these e-mail discussion groups.

There's a wonderful Web site, the Blood & Marrow Transplant Newsletter, which is I think www.bmtnews.org which has -- it's a former cancer patient who started a newsletter about bone marrow transplantation. She has a book of basics for patients which is -- can be downloaded from the Web.

She's got a little book called "Mira's Month" about explaining to little kids your parents have cancer, or one of your parents has cancer. And she has all kinds of links to, you know, if you're having trouble with your insurance company here's an attorney who can help you.

So those are three really good ones. As I mentioned, GrannyBarb and Art's Leukemia Links is very good. The National Cancer Institute has a wonderful one. The American Cancer Society has a terrific Web site. It's almost -- there are infinitesimally, you know, there are so many out there and I think you have to look specifically at the ones that deal with yours.

There's something called "CancerGuide" by a guy named Steve Dunn in Boulder, Colorado that specifically tells people how to research your own cancer. And he walks you through how to look at a medical study. He walks you through how to visualize your search. How to think about the pros and cons of researching.

And he's very straightforward. He researched his own cancer some years ago and decided that he was going to show other patients how to do it. And that's www.cancerguide.org I believe.

Again, most of these you can find -- if you don't have the exact Web address you can just search the name of the site and the Web search engine will usually find it for you.

GROSS: Did you join any support groups for people with cancer?

LANDRO: I did not joined any support groups for people with cancer because, again, there was no Internet at the time that I was going through this. I'm kind of independent. I had my family was my support group.

I did speak to several people on the telephone, but I will tell you that in the research that I did for the book and for subsequent articles that I've written for the "Wall Street Journal" on, you know, what you can find out there on the Internet; I've discovered some of these online support groups like BMT Talk, which is a former cancer survivors e-mail discussion group for people going through bone marrow transplants.

And I read that every day. And I have talked to many people on there. I make myself available as a resource to anybody who wants to take the initiative and call me up to talk about some of the things they might do or recommend them to different Web sites or even recommend them to my doctor. But I myself did not join a support group. That doesn't mean I wouldn't recommended it to anybody. I think support groups are just incredible and I think they're wonderful things.

GROSS: You're recommending that people do a lot of research and choose the best program and choose the best doctor. A lot of people are in HMOs now that make that kind of choice very difficult.

LANDRO: That's correct. When I was doing this, managed care was not quite the giant that it is now. I had a hundred percent hospitalization, and my insurance company did pay for my treatment.

In fact, my employer, Dow Jones and Company, was self-insured, which basically meant if the insurance company that was doing the program said no you could go to them and they could overrule and say yes. And they did do this for me on several occasions.

I think today with HMOs you're getting out of that period. There's a backlash against HMOs right now. You've got all kinds of recourse if an HMO says no. You have to remember that most HMOs are going to say no as a matter of course.

What you have to do is remember that no doesn't mean no forever. It's just -- you have to fight back. You have to be prepared to fight back. And I think the more informed you are, the more able you are to go to an HMO or to a managed-care company and say, "I have information here that shows that the patients that have gone through the treatment at this hospital that your telling me I have to go to are not doing well."

I mean, I think -- HMOs are nervous. They're nervous about the patient backlash. There are a lot of states that are now -- I think there are 17 states now -- this was an article in my own newspaper recently that said there are 17 states that have recourse. That they have review boards that allow patients to challenge managed-care decisions. And in some cases they'll overturn and say yes you have to cover this or you have to allow the person to see something.

And of course there's a big trend, as you know, towards this PPO -- Preferred Provider Organizations -- where you can have more choice in picking your providers.

GROSS: Now something you bring up in the book that I hadn't thought about before is how difficult it is to actually allow yourself to recover at some point. Or to think of yourself as somebody who is recovering. You get so used to being sick that when you turn the corner it's shocking that you're actually getting your body and your life back.

LANDRO: That's absolutely correct. I mean, I think it you're so oriented towards this terrible ordeal that you're going through, and your whole family is oriented towards it. And everybody's life is so focused on that. And once you start to believe that that's over, I think you start to look at your life in different ways.

You know, you start to think about, "wow, I don't have to think about being sick. And I could be alive for a long time. Maybe there are ways I can change my life so that it will -- I'll be happier or I'll be more fulfilled in my personal life or I'll be more fulfilled in my work."

You know, you tend to be a little more optimistic about things in some ways, but you're also a little bit more pessimistic. You've been through something that so frightening. You've seen things other people just will have some dim view of. It's almost like you're in a club. You're in a club with other people who have been through the same thing and nobody else really completely understands it except you and the other members.

You know, in my case it was -- it was -- I said in the book I was so excited all my friends were going crazy because they were turning 40. And I said, "oh, my God, I'm so lucky I'm turning 40." So, you do have that kind of attitude in life which helps a lot.

You know, in my case I reevaluated my personal life. I was divorced. I managed to fall in love and get married again. So I was able to do some things to, you know, really enjoy the life that I had been given back.

GROSS: Has your working life changed? You have a very high pressure job as a senior editor at the "Wall Street Journal."

LANDRO: Yes, I do. And I will tell you and I think many people who have had cancer -- the "Wall Street Journal" -- one of my reporters just wrote a story the other day about a woman who was in the middle of a very high profile job launching a new magazine, the "Conde Naste," and was diagnosed with breast cancer.

This happens to so many people. You're in the middle of this great career. You've worked so hard. You are out there competing. And suddenly it's like you're running this marathon and you get sidelined by a freak injury. And while all the other runners pass you by you have to go into this parallel universe. This kind of world of medicine and hospitals and doctors.

And I think the thing that motivates a lot of people is they want to just get back to their real life. They want to get back there. One of the things that really motivated me was that I had worked so hard for -- to be where I was. And I wanted to get that life back. I wanted my normal problems back. And my everyday concerns. And I wanted to get back to that great job and to my colleagues and to my newspaper. And I think I had a tremendous amount of support in the workplace. I think a lot of people do have support in the workplace.

You know, in the old days cancer -- a diagnosis of cancer -- was OK, you're off the track. You're a dead man -- a dead woman. I think nowadays with the advances in cancer treatment and just more sensitivity in the workplace about this I think a cancer patient can come back and it's like it never happened. People don't always look at you differently, you just come back and do your thing and before long it's back to the old competitive workplace again.

GROSS: Well, Laura Landro, I wish you continued good health. And I thank you very much for talking with us.

LANDRO: Thank you for having me.

GROSS: Laura Landro is the author of "Survivor: Taking Control of Your Fight Against Cancer."

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Dateline: Terry Gross, Washington, DC
Guest: Laura Landro
High: Laura Landro has written the new book, "Survivor: Taking Control of Your Fight Against Cancer." In 1991, Landro, then a "Wall Street Journal" reporter, was diagnosed with leukemia. She used her journalist training to seek out the best form of treatment. She is now senior editor at the "wall Street Journal."
Spec: Cancer; Diseases; Lifestyle; Culture; Laura Landro

Please note, this is not the final feed of record
Copy: Content and programming copyright 1999 WHYY, Inc. All rights reserved. Transcribed by FDCH, Inc. under license from WHYY, Inc. Formatting copyright 1999 FDCH, Inc. All rights reserved. No quotes from the materials contained herein may be used in any media without attribution to WHYY, Inc. This transcript may not be reproduced in whole or in part without prior written permission.
End-Story: Laura Landro

Show: FRESH AIR
Date: FEBRUARY 17, 1999
Time: 12:00
Tran: 021702NP.217
Type: FEATURE
Head: Dr. Marisa Weiss
Sect: News; Domestic
Time: 12:40

TERRY GROSS, HOST: Dr. Marisa Weiss is a physician based in Philadelphia specializing in breast cancer treatment. She's found that even after women finish treatment they often continue to feel distressed and have a difficult time resuming what they think of as normal life.

In response, seven years ago, Dr. Weiss started an educational organization called Living Beyond Breast Cancer to help survivors and their families. The group runs conferences, publishes newsletters, has a survivor's telephone help line and runs an Internet site. Dr. Weiss is also the author of the book, "Living Beyond Breast Cancer."

Laura Landro has in her book about surviving cancer and informing yourself to help yourself survive, that it's difficult sometimes to realize that you're no longer sick and it's time to return to life. It's time to return to the rest of the world -- to re-enter the world.

I'm wondering if you find that's true with a lot of your patients, that when they're through with the therapy and when they have recovered from it that it's almost difficult to resume with life?

DR. MARISA WEISS, AUTHOR, "LIVING BEYOND BREAST CANCER: A SURVIVOR'S GUIDE FOR WHEN TREATMENT ENDS AND THE REST OF YOUR LIFE BEGINS": Yes. I think that's certainly true. It's very interesting because when I see people finish their treatment I see that they expect a big party, that they'll be thrilled, they'll be excited.

And then they are bewildered by this mix of emotions. It's not that straightforward. All of a sudden everyone expects them to be normal. They want themselves to be normal more than anyone else, and yet they don't feel normal. They may have lost their hair. They may have gained weight through treatment. Lost a breast or had their breast altered.

They haven't been working full-time for a while or maybe they have, but not been feeling well. They may not be sleepy properly. They may have been hurled into their menopause. Their relationship with the people in their life may have changed.

And all of a sudden they have to get back into the normal swing of things. And also they don't know if they can look to the future. Is there a future for me? It seems presumptive to think that they can make a vacation plan a year from now. And they worry about that. But over time people sort of feel a little bit more like themselves. They get some of their energy back. They start looking more like themselves.

GROSS: OK, you say people start to feel more like themselves. I hear from a lot of people that you, in a way, feel transformed. You feel like you're not the person who you were before the cancer. Do you hear that a lot?

WEISS: Yes. That breast cancer is a second chance at living. It's a wake-up call. Unfortunately, women may have several wake-up calls at one time. It may be the breast cancer. It may be the loss of a job. It may be that a spouse leaves them or something else about their life is disturbed.

And many women respond to that in a positive way. They say, I have another shot at it. I'm going to spend time with people that I care about. I'm going to change my job to something that is much more rewarding. I'm going to spend more time with my kids. I'm going to travel more. I'm going to do good things.

But it's also true that women -- some women respond differently. Some women are -- avoid new challenges or fearful or are paralyzed by the fear. A woman who I took care of who had breast cancer told me that when she was diagnosed with breast cancer it was like a whale moved into her living room.

There was this overwhelming fear. There was no safe place. Her own living room was a scary place to live. And she kept bumping into this whale, this fear of her breast cancer. And over time that patient and I worked on this together, and I tried to help her shrink that whale. Make it smaller, make it to the size of a magazine rack so she wouldn't have to walk through her living room and see it. And there are various ways we did that.

GROSS: How did you do that?

WEISS: Well, I asked her about her fears and I asked her to express her fears. She was convinced she was going to die. And actually she had a good prognosis -- breast cancer. And the chances were that she was going to live -- live long and live well.

And she hadn't even asked the question about that. She was too scared to ask me what her prognosis was. So that was an important way we were able to deal with her fear. I see her on a more frequent basis and follow-up than I do other people, because she finds it reassuring to see me.

I send her copies of the letters that I send to other doctors so she has a file of her medical records at home. She knows she can call me. I tell her I'm there for her. She was also part of a support group, and she had a network of other breast cancer survivors that she could call and reach out to.

GROSS: If you're just joining us my guest is Dr. Marisa Weiss. She's the author of the new book, "Living Beyond Breast Cancer." And the founder of a support network which has the same title.

Your educational group is called Living Beyond Breast Cancer. Do you have a Web site?

WEISS: Yes. It's -- you can access that by www.lbbc.org and also you can call our telephone number which is 610-668-1320 to join our free mailing list and get our quarterly educational newsletters as well as new updates that we send out throughout the year.

GROSS: You point out in your book that often when you're passed therapy for breast cancer you have to relearn how to live your life now that all the treatments are over and you can kind of pick up the pieces again. And sometimes your family or your friends can be really anxious to just like put the disease away. Put it behind you. But you might not be ready to completely put it behind you. You still have worries and concerns.

You suggest this is a very good time for a support group. If everybody around you wants to get back to their real life and you're still -- you still have worries and concerns and thoughts that you need to share, consider a support group.

WEISS: Absolutely. I mean, it's very normal for you to have persistent concerns. Once you've had breast cancer it never leaves your life. You're always going to be worried about it. And I ask my patients what helps them shrink the whale, what helps them reduce their fear of breast cancer.

Many of them say my support group. I get on the telephone with my best friend or I get on the telephone with women in my support group and I reach out to them, and they help me in a way that no one else can help me.

GROSS: Give me some examples from your patients of how support groups are very helpful, either during or after cancer treatment.

WEISS: I think when you're diagnosed with breast cancer you can feel that you're the only one to be worried about dying every time you look at your child, and every time you think about the future you get scared. Every time you have back pain your worried about metastasis and you don't want to burden your family every time something like that happens.

You don't want to tell them what you're worried about, otherwise they may suffer unnecessarily. They may be worried. You don't want to steal away the pleasure of living from everyone in the family. But a support group is often a place to go where you can safely talk about these issues and get support from them, and insights from them that you couldn't get from anybody else.

I think that when we think about breast cancer, in the very beginning, women worry that getting diagnosed with breast cancer is like a death sentence. That the first thing that they think about is dying of breast cancer. That breast cancer is going to still years of their life. That they won't life as long.

But over time, as you go on with your life and you keep living, you also can find that breast cancer can steal away the pleasures of living while you are living. It can take away from the quality of your life. And one of the things that you need to do as you rebuild your life is to recapture some of the pleasures of living, like the intimacy in your life.

You know, sexuality and the ability to think about the future. To have fun and make jokes and go out and live life with carefree moments. And so I think that part of living beyond breast cancer is learning how to live again. And to try to resist breast cancer not just in terms of living as long a life as possible, but also living as well as you can live.

GROSS: If you're looking for a support group do you think it's important to find the right support group, a group of people who you can relate to and feel comfortable with?

WEISS: Absolutely. It's very important to go to the right support group. In my hospital the support group is put together by a facilitator who interviews everyone ahead of time and makes sure that everyone in the support group is likely to be able to get along.

That it's not too big a group. That everyone gets a chance to express themselves. It's usually good if women in a support group have a relatively similar type of breast cancer. Because if you have somebody who's had bone marrow transplantation for metastic breast cancer and she's in the same group as someone who had a very very early type of breast cancer, then when they leave the group they may be confused by the other persons situation.

They may be comparing notes, "oh my God, she didn't have chemotherapy. Maybe I should have. Maybe what happened to her is going to happen to me." It takes expertise to run a support group and to have the support group be therapeutic.

GROSS: My guest is Dr. Marisa Weiss, founder of the educational organization Living Beyond Breast Cancer, and author of a book by the same name. We'll talk more after a break.

This is FRESH AIR.

BREAK

GROSS: My guest is Dr. Marisa Weiss, founder of the organization Living Beyond Breast Cancer.

How often do you deal with people who have had the actual tests for the breast cancer gene and can say definitively that they have the gene?

WEISS: I'm involved in the family risk assessment program at Fox Chase, and we do genetic testing of women who are at high risk or who believe that they are at high risk for developing breast cancer. I also am from a family that has a significant risk of breast and ovarian cancer.

I'm very involved in that process. It is a process. It starts with education -- teaching women what is breast cancer. Who is affected by breast cancer. What is their actual risk of having breast cancer. We go over their family history and write it down on a piece of paper, and look at it and see are you from a family that looks like there is an inherited form of breast cancer here. Or are you from a family where there is not such a pattern present.

Then we talk a lot about whether or not they should go ahead with a blood test that looks to see if they, in fact, have a genetic abnormality that's been identified to date. And then what we do is we talk to them about how they may handle the results of the genetic test. And then at the next session we actually give them the results of the genetic test.

And all along the way we're providing support and information. It's really a complicated process. And it's also very fascinating because within a generation -- one generation -- women can have a very different approach. For example, one family -- one sister -- will say, "I want this information tomorrow."

Another sister will say, "I don't even want to know about it." Another sister will say, "I want to know absolutely everything about my situation because if I get -- if I find out that I have the gene abnormality I'm going to have my breast removed, my ovaries removed and everything else."

Another sister from the same family may say, "I will take care of myself. I will use alternative therapies. I will make sure I see my doctor. And I reduce the stress in my life. And I eat well. And I stop smoking and do my exercise. And I'll handle it that way."

GROSS: What are you likely to recommend to a woman who finds that she does have the gene for breast cancer?

WEISS: If a woman is coming from a family where there is a breast cancer gene abnormality what we do is we look at how that particular family is affected by breast cancer. For example, in some families breast cancer may be very virulent. It may affect women at a young age. It may affect both breasts. It may take their life away at a young age.

Whereas in other families that have a breast cancer gene abnormality, women are living until -- into their 60s, their 70s, their 80s. They had breast cancer, yes, but they are not dying of their disease.

And so we try to get the big picture. And we also look at the woman's life and say, what are you doing already to stay well? Is this fear of breast cancer affecting your life? What is your style of making decisions? Do you like to be aggressive? Do you like to be more laid-back? Do you want to do everything today that may reduce your chances of seeing breast cancer tomorrow?

Or do you feel that you're more confident and comfortable with natural forms of treatment in close surveillance with the idea that if breast cancer is discovered, we'll try to fight it as early as possible. And give you the best treatment as possible so that you get beyond it.

For example, a woman who is more comfortable with the watch and wait approach may decide to take tamoxifen has a way to reduce her risk. Whereas a woman who feels very aggressively about her treatment may decide to have prophylactic mastectomies. Both choices are correct, you just have to match the treatments with the particular person who is sitting in front of you.

GROSS: There was a new study recently published saying that having preemptive mastectomies can be effective in preventing breast cancer. I imagine a lot of women are calling now and asking you about that. What suggestions do you have for a woman who might be considering preemptive mastectomies to avoid breast cancer?

WEISS: Prophylactic mastectomies, the removal of the breast in order to prevent breast cancer from ever forming, is a very reasonable option for women who are really at high risk for developing breast cancer. It does not eliminate the risk of developing breast cancer, but it does substantially reduce it. It can reduce the risk by about 90 percent in women at high risk.

So for a woman who presents with a concern about her breast cancer risk, first we have to figure is she at high risk are not. Or is it just a perceived high risk. Because to do prophylactic mastectomies in someone who really is not at high risk is wrong, I think.

But if someone really is at high risk and wants to do everything she can today to never see breast cancer, to try to avoid the chance that breast cancer would ever be diagnosed. Let's say she also has a breast cancer gene abnormality, then yes, I do think that prophylactic mastectomies represents a very reasonable treatment.

GROSS: A lot of your patients have had breast cancer, there in the clear, and they're worried about a recurrence. What sort of things can a woman do to prevent a recurrence of breast cancer?

WEISS: To prevent breast cancer reccurence, at least reduce her chance of ever having it, tamoxifen is a very useful treatment in woman who have a tumor that's hormone receptor positive. Eating well is important, which means a low-fat diet. The right fats in your diet. Avoiding fried foods. Avoiding excess dairy products as way to get protein. Avoiding alcohol use. Stopping smoking. Exercising about three hours a week. Reaching out and getting support. Reducing the stress in your life.

And those lifestyle choices -- those therapeutic interventions -- also improve your health in general not just your risk of breast cancer.

GROSS: There's a history of breast cancer in your family. And you are around people with breast cancer all the time because that's the people who you treat. Has that made you more worried about the possibility of getting breast cancer yourself?

WEISS: I am constantly surrounded by women who have been affected by breast cancer, either directly or indirectly or are really worried about breast cancer not just through my medical practice, but also through writing the book and doing national speaking and working with television and radio and every which way. So I am surrounded by it. And sometimes I'm more worried about it than someone else who is not as steeped in it.

And every once in a while I have to take a break from it and say, you know what? Timeout. I have to separate myself a little bit from this whole disease because it's just getting to me.

And it may be that I take a timeout because I'm very upset about everyone -- about the women who I have taken care of, that maybe someone I was very attached to died or we did everything we could but it wasn't enough.

Or that she's doing OK, but the family is having a hard time and I get very involved with that and I -- it pulls me down every once in awhile. So I do -- I do need to take a step back intermittently just to pull my energy together, get centered and move on. Because I know that as hard as my work is, it's also very rewarding and it's very important. And I feel privileged and lucky to have that opportunity to help so many women in a significant way.

GROSS: Well, I want to thank you very much for talking with us.

WEISS: Thank you, really.

GROSS: Dr. Marisa Weiss is the founder of Living Beyond Breast Cancer. Their Web site address is www.lbcc.org Our cancer series concludes tomorrow.

I'm Terry Gross.

This is a rush transcript. This copy may not
be in its final form and may be updated.

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Dateline: Terry Gross, Washington, DC
Guest: Dr. Marisa Weiss
High: Marisa Weiss is co-author of the new book, "Living Beyond Breast Cancer: A Survivor's Guide for When Treatment Ends and the Rest of Your Life Begins." Weiss is a radiation oncologist at Paoli Memorial Hospital in Pennsylvania. In 1992, she formed the support network Living Beyond Breast Cancer to help survivors and their families.
Spec: Cancer; Diseases; Lifestyle; Culture; Dr. Marisa Weiss

Please note, this is not the final feed of record
Copy: Content and programming copyright 1999 WHYY, Inc. All rights reserved. Transcribed by FDCH, Inc. under license from WHYY, Inc. Formatting copyright 1999 FDCH, Inc. All rights reserved. No quotes from the materials contained herein may be used in any media without attribution to WHYY, Inc. This transcript may not be reproduced in whole or in part without prior written permission.
End-Story: Dr. Marisa Weiss
Transcripts are created on a rush deadline, and accuracy and availability may vary. This text may not be in its final form and may be updated or revised in the future. Please be aware that the authoritative record of Fresh Air interviews and reviews are the audio recordings of each segment.