Woman; 326; Breast Cancer Controversies

One thing she may eat a moment and interrupt the exploration of the world of women today. Good evening and welcome to woman. Tonight we're going to be talking about breast cancer controversies. My guest is Rose questioner author of breast cancer a personal history and investigative report. Rose had a mastectomy recently. Welcome to woman Roe thank you. But as we get a

lot of advice about what to do about breast cancer do you think that the advice we're getting is adequate. Well as far as I know we're getting instructions and breast self-examination which always and with if you find anything call your family doctor if you call that advice that's fine I call just to help. One hand your family doctor may be the last person you should call sort on your gynecologist was the last person you should call in the United States. Most women take their breasts to a gynecologist although they are trained to treat the reproductive organs. No instructions that I have ever seen tell you to go to an oncologist a cancer specialist. No instruction that I have ever seen tells a woman where to find one more basic than that I think that women should be told that they should be slippery when they do examine themselves because in my case I would not have found my lung if I had not been slippery from

also a slipper. From 7-Eleven a baby oil or suntan oil an economy on oil. I think that any woman that's put cream on her face is aware of the fact that a perfectly smooth and flawless skin suddenly feels like a mountain range when the fingertips are greasy and that goes for longer than the breast as well. Also there are other symptoms of breast cancer besides along and I think women should be made aware that any change of skin texture any kind of flaking any discharge from the nipples and any puckering read them playing. That is unilateral and not in both breasts should be reported not to a gynecologist if a woman feels foolish going to an oncologist for just a preliminary diagnosis at least go to an ENT Turnus the specialist in internal medicine not to a gynecologist. Don't most women go to gynecologists in this country but not in other countries I've been to.

As a matter of fact it's sort of a joke in other countries that American women play breast to a gynecologist. Got a college use that is trained to treat the reproductive organs the breast is just not a reproductive organ. That's all I know you've traveled to Japan Canada Sweden. England Scotland Finland the Soviet Union. So you must have a very good idea of the status of breast cancer research both here and abroad. Why I can't really say abroad because I didn't go to the continent. My main motive in going to Europe at all last year for the book was to see if breast cancer was treated differently in the conferees where there is a larger percentage of women in the treatment of breast cancer and where medicine is nationalized. And you don't have the American fee for service system and that's why I didn't go to the continent because they're pretty much the way we are here. There is a big difference where medicine is nationalized and the

biggest difference is that general practitioners family doctors. I'm not so anxious to keep hold of a cancer patient either voluntarily or in some cases by law and the Soviet Union I was told it is the law and no general practitioner is permitted to deal with cancer of any kind if a whim but in the case of breast cancer the woman appears in his or her office with what might be a symptom of breast cancer she is immediately referred to an oncologist. And because of this even though their advances their technology their chemotherapies and so on and sophisticated as ours their survival rates are really not lower. We are we are off set in this country because so many of our 90 percent it is estimated of American cancer patients all cancers are treated by family doctors or general surgeons. Until they

decide that it's more than they can handle and then they are turned over to one colleges. So are American women getting the best cancer care breast. I don't think so and I think it's for that reason we could. The survival rates that are often quoted and too often quoted are that a woman who has developed breast cancer has a 50/50 chance of living for 10 years. But this includes women who would never get any treatment at all never go to a doctor and die of breast cancer it includes women who go to a doctor but too late to be helped by anything. It includes women who go to a doctor early enough to get very bad treatment. And that unfortunately is too often and it applies to women like me who have the what I consider to be the very best and that's at the Roswell Park Memorial Institute which is the oldest cancer hospital in the world. I think I am confident that if only this group not

just breast cancer all cancers if only this group were measured the survival rates would be infinitely higher in this country so then it's really much more hopeful than we think. I think just to stick scare us to death why it's like taking traffic fatalities. Including people who drive while drunk and at 100 miles an hour people who drive while drunk with the the maximum safe speed and going all the way down to the law abiding citizen who never drinks at all. And naturally the person who drives a hundred miles an hour while he's drunk has a greater chance of dying behind the wheel than the person who drives carefully but if you look at the overall rates it looks terrible because they skew it. This is what I think is happening in the United States unfortunately general surgeons who are trained to cut and to take out the stitches and then should turn a cancer patient over to an oncologist are giving chemotherapy or

ordering a radiation are managing all cancers and breast cancer which is a very bizarre and unpredictable disease at best and they're managing it until they decide that it's beyond them. I have so many examples of mistreatment I leave out the word malpractise cause that's a no no. But let's say mistreatment. By general surgeons and general practitioners because they simply do not know what they do not know. It's a combination of arrogance it's a combination of ignorance and there is also a lot of economic incentive in it and that's why I went to Europe. I am convinced that the nationalization of medicine has gotten rid of those. It would be unthinkable in in England where it is voluntary for a general practitioner. Even the Harley Street doctors turn their patients over to the Cancer Center. There's also another thing and that is women just don't know enough. Well that's why I wrote the book because when I needed the information it wasn't there and I had to go to a medical lab or the

National Library of Medicine lobby the National Institutes of Health to dig out all the information I had including the research I did in terms of personal interviews with the people here and in other countries. It's there but it's not written for women 3. But it's really got nothing to do with the fact that nobody will publish it or that nobody will write it what I'm discovering is nobody wants to read and I have an admission to make here I circled the book for a day. I mean I just looked at it and I opened it a little ways and then I closed it and I. I thought you know I know I have to read this book but I really don't want to. Well I don't understand the. It's been quite an education for well you know you've had experience it's less fearful for you. I mean most women have not had the experience and it's terrifying. She was afraid of heart disease it's far more prevalent. Nobody has ever keeled over suddenly out of the clear blue sky from cancer but they do from stroke.

They do from high blood pressure they do from coronaries. Why are people afraid to carry around a book or read a book. And so that's about heart trouble. But I I think we misunderstand I think we're led to believe it's means instant death it means certain death. That's why I must agree with you simply because it's a fact that this is the first step of what in the jargon is called denial whatever it is that prevents a woman from examining herself whatever mechanism it is that keeps her from going to the doctor and waiting too long because she knows it's going to go away is the same mechanism that keeps a woman from opening the book I think. And this is just an opinion that I've come to without anything more than just a superficial thinking I think possibly there has been too much emphasis on the importance of early detection in the sense that it leaves the implication that if you haven't caught it early you better forget it. And that's not true. Most diseases are not curable arthritis is not curable diabetes is not curable you name it

I was it's infectious it is not Can curable and most of the time we don't know the cause either. It is controllable. Diabetics would die without insulin and cancer patients sometimes have to take chemotherapy which is an insulin as chemotherapy. What else of his he does not call chemotherapy so doesn't sound as frightening. But if you called. If you said a person has to get Pam which is what Mrs. Ford is good. Doesn't sound so terrible. Chemotherapy sounds awful. Well it sounds like you're going to die and it sounds like the question is when. And you don't. Granted it is. If you find it early any cancer but breast cancer if you find that very early an early means it's got to be less than a centimeter. Or two at most and it's got to be without any involvement of the axillary lymph nodes or the glands in the armpit. You've got a chance for cure. You've got a 90 percent chance that you will live

as long as you would have lived without it. The other 10 percent is that a stray cell broke off and form the colony by the blood stream. But that's cure. But as I say most diseases cannot be cured. I don't know you know about one fine open book you know and begin to read I was very grateful that I was getting knowledge that I had never had before. Well thank you. I wrote it primarily for women has it not as a preventative because nothing prevents breast cancer. But as a way to cope with the problem if it should arise. But in advance I have discovered from my aunt and from talking to women that most of the books have gone to women who have already had a mastectomy. Unfortunately this is. A pool of women that is large enough to ensure a very very good salesman like the publisher very happy and my husband too. There are an estimated six hundred seventy seven thousand women

alive in this country who have had one or two mastectomies. There has not been enough emphasis on the long term so I never heard that statistic before. Six hundred seventy seven thousand is the number. Where are the a lot of them came out of the closet like Julia Child. I came out after Mrs. Ford Mrs. Rockefeller made it fashionable or not a taboo subject anymore and this is something I think that Mrs. Ford Mrs. Rockefeller had not been given enough credit for by publicizing the fact that they have cancer and they brought these long term survivors out for public view. And as a mastectomy I can tell you I never knew a long term survivor except Alice Roosevelt Longworth and she's a legend so she really didn't count. Everybody I knew that had breast cancer died simply because the women who survived did and never talked about it. And this is a major contribution that these two women made as well as Marvell

Abai and Shirley Temple Black but because of their you know lesser rank it didn't make as much of an impact in terms of the front page. There's another thing was that kind of peculiarly American isn't it and that is the surgical biopsy. Yeah well it's true maybe not a surgical biopsy but the other hospital. Yes and this is again I think a matter of nationalized medicine where people are very aware of hospital costs. They aren't parsimony is the that's the nicest word I think of when it comes to putting you in the hospital. Now in the case of my biopsy which was an inpatient biopsy in the hospital I didn't know then what I know now. The witness what went into the hospital late afternoon one day I spent the night the following day the long was removed I had to pay for the room. My surgeon cost two hundred thirty dollars just for his 20 minutes worth of work.

And he didn't take out the stitches if he had taken out the stitches would have been another $15 I had to pay for an anesthesiologist the operating room the recovery room and I didn't pay the insurance company paid but that little biopsy wound up causing insurance company almost a thousand dollars whereas the surgeon had he had done it as an outpatient in a little room in the hospital or in the emergency room under a local anesthetic. But if he would have earned him $50 from Luke was in the room would have cost maybe 20 and that would have been that in countries that have nationalized medical service an inpatient biopsy in the operating room under general anesthesia is the last resort in groups like Kaiser Permanente or the hip in New York or group health and washing that I know of. Again the inpatient biopsy. It is a rare thing it's only done if the medical situation is such that it would be an operation the woman could

not watch. And you know be awake for. Or if the woman just doesn't want to be awake and for it but they can do 90 percent it has been asked by 90 percent of all biopsies could be done under a local anesthetic in a room. But isn't it usual that eye woman has a biopsy in an operating room and if it's malignant then immediately a mastectomy is done. It's usual in this country. Not no that's not what happened here though is it now. It was difficult to do it the way I did it. Let me preface all this by saying that I worked at Johns Hopkins Medical School for four years before I was married and this left me with two legacies why I should say three number one I was not afraid of doctors and I'm still not. Because you can't date a medical school medical student and wind up being afraid of doctors. The second benefit was that I learned the medical language which is a very foreign language. And the third was that I had a basic distrust of the

frozen section which is the fast freezing laboratory study of a piece of tissue to see if it's malignant. There were just too many jokes about the medical student who went in to have his you know what biopsy it was my leg and I cut it off and then whoops the results came in three days later was benign after all. And even though this doesn't happen often it does happen and there is a case being with a gaited now in California where a woman's frozen section said in the leg and the breast was removed and the frozen and the pathologist who was a friend of the family came in later with the good news that she didn't have cancer after all. And so it does happen. And I just had this distrust of the frozen section and I was not about to have the one step procedure but it after doing a great deal of research in the library I found out that there was good medical reason not to do the biopsy and mastectomy together because if the cancer has already spread

beyond these glands or nodes in the armpit into the longue or liver or bone the mastectomy is totally unnecessary. Does that have any effect if it's done and it's already spread. Does that have any effect on the length of time a person lives after that. Well to the degree that if the woman had not undergone major surgery and mastectomy is major surgery they could begin chemotherapy almost immediately. You can't begin chemotherapy immediately after that second oh no you have to wait six or eight weeks until you recover it's you lose a lot of blood and all the chemotherapy is are very potent drugs. And you just don't give them want to want a body that has suffered this kind of surgical shock. You have to wait until the body's system gets back in order. And it's very valuable time. But why lose a breast for not models anything for now. If it is the whole point of doing a mastectomy is to stop it before it spread it's already spread

and it can be found at least 10 percent of the time. We don't have the technology and the scanning materials and so on to be able to detect every spread because it's microscopic we can always find it. When I say we I mean they the doctors. But I think it's a help. But sometimes I think I know more than some of our actors. But about breast cancer. Let me qualify that 10 percent of and this year that would be nine thousand could be detected in the advance. And these breasts are lost I know of several cases where it was already in the lungs or liver and they did a mastectomy anyhow because they didn't scan or do the staging until after the mastectomy. This is when it's usually done in the one stage procedure if the woman has invaded and if they find several glands in the armpit are malignant then they'll

backtrack and stage and and then they'll decide what to do in the way of follow up care. But aside from medical reasons there's psychological reason to look at those and count you know we all get over that. That's with and that's what the surgeons tell me all the time. I hadn't heard very many women who got over that. Why I think people are resilient and you can get over anything but why. It's got to leave scars I can't imagine not having gone through it I can't imagine the situation where you go to sleep and not know whether you're going to wake up with one or two because I wanted to sleep knowing I was going to lose too and was still a shock. I beg your pardon I was wrong and it was still a shock to wake up with it gone. And I was really looking forward to it because when I got into Roswell Park my and my surgeon doctor the house said Now before we do any mastectomy we've got to run these tests and see if it's anywhere else. And it took two days to do all

those things. And all through the two days I kept things you suppose they find out I mean operable. That's what I mean Joran operable when he came in and said that everything was clean as far as we anybody could see. We had a celebration My husband brought in a bottle. We set my hospital in the van becomes relatively quickly doesn't. Yes very quickly. I think that everybody has experienced that in life. What is very very fearful one day becomes the best thing the next day. By the time they finish the staging. I was happy to hear that I was a candidate for mastectomy and that's all I can say it may sound macabre but that's the way it is when a woman tells me that and I've been told many times that the doctor assured her it was benign and she'd be out with a Band-Aid on one woman told me she had a dinner party for 20 scheduled and doctors said don't cancel it because you'll be out. No problem. Plenty of time to cook then and she woke up the next day stuffed with pipes thing. I just don't see

how they parent. They do. Outwardly you never know what goes on and you don't know what trauma has been left by the whole thing. And let's just talk about it just as you've gotten a lot of women have little children. It's one thing to go in for a procedure it's going to take a couple of hours it's another thing to go into the hospital for something it's going to take 10 days. Want to fill your freezer you want to clean up your bedroom so your mother in law doesn't see them as lots of reasons you might want to have a doctor that might be the main reason there they can insist on what a lot of concern about this on the part of women. Is anything happening for instance is the National Cancer Institute and the National Institute of Mental Health. I mean and they cooperating are they trying to do something about this to change this situation. To my knowledge the only joint effort between those two institutes is a study on whether there is any psychological compound into the etiology of melanoma which is a skin cancer there's no. There is no joint

contract the National Cancer Institute does have five contracts being studied now by different institutions around the country. One the psychological aspects of mastectomy Now this is after you've already had the mastectomy. To my knowledge there has been no work done on the psychological trauma of the one stage procedure. The whole business from the moment the woman doesn't want to open the book right up to the to the point where she finds a symptom is what I call the the preclinical psychological as bags because there are many psychological aspects before you ever have a mastectomy before you find you're trying to do something about that until you started an organization. Well I have a Breast Cancer Advisory Center that I began and it is being carried on by a nurse Miss Dorothy Johnston. It's a nonprofit organization. And we answer questions we try to help out wherever we can. And is that the point to disseminate disseminate information to the whole

and to to try to get more where we don't already have it we have a medical advisory board that includes an oncologist the psychiatrist a clinical psychologist and social worker who specializes in cancer what kind of questions do people ask us. The most common questions where do I go. We have a. So if it's urgent they'll call otherwise they ride but where do I go to get the bread. Where where do I find colleges. Do you have an address where people might be able to write its box for twenty two Kensington Maryland 2 0 7 9 5 and the name is the Breast Cancer Advisory Center. And we we have some information and we send out for specific questions. Mrs Johnston answers them to the best of her ability and if we get advice from the board breast cancer hasn't been something that people have given a lot of money for research for a long time how then and only since 1966 is the real big money coming in from breast cancer. Why is that.

Well I think it was because it was in the early 60s that the cause of lung cancer was discovered that came first because it was a male the. But that's my judgment. I don't know why all I can say is that in 1966 somebody in Congress and I've never been able to find out who because the resolution asking for the Breast Cancer task force be created was a whole bunch of names and I don't know who the original one was but somebody in Congress puts the five hundred thousand dollars be appropriated to set up a breast cancer task force to find the cause and cure breast cancer that was 1966. The task force finally really started rolling in 1970 and very very slowly the budget was increased. And it's up to nine million dollars this year which is no change from last year so with inflation that's a cut.

But. It's better than it's been. I think that if in as much money had been put in the breast cancer years ago as it was put in the lung cancer they would have found the cause by now and maybe go on a long way toward finding better controls cure is something that I think is going to be very elusive for cancer as it is for all these other diseases that plague is and I don't know why there is so much emphasis on cure I think we should concentrate more on prevention and intent that will help and that the emphasis will tank. I certainly hope so there are more and more people concerned with the carcinogens and the Holy cow ology movement and the fact that it has become very evident that certain cancers are peculiar to certain populations certain geographical areas certain liver cancer just came out of the vinyl chloride industry all these epidemiological factors and that word

means who when and where doesn't have anything to do with its being catching. That that is a common myth about it's very common and is no reason to believe that people do things so I have one person who has yet to come into my surgery was 17 months ago. She writes. That's incredible. Rose thank you very much for being here. It's been a pleasure and also I you know I'm not as frightened as I was previously. Now that I've read the book. Thank you for watching and good night. Produced and was

funded by public television stations the Ford Foundation and the Corporation for Public Broadcasting.