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Fighting Cancer and the Medical Establishment
Interviewed by Terri Goldberg
‘Science for the People’ Vol. 14, No. 4, July 1982, p. 25
Terri Goldberg is the Science for the People magazine coordinator. She is also a member of the Boston Women and Science Collective.
Rita Arditti and Pat Brennan have been long-term members of Science for the People. They coedited Science and Liberation.
Terri: What is your professional and personal background? What is your background in science?
Rita: I came to the states in 1965 after studying genetics and molecular biology in Italy. I worked first at Brandeis and then at Harvard Medical School doing research. After that I became more interested in social aspects of science. I now work for an alternative education program, Union Graduate School. There I’m mostly involved in projects around women’s studies and health — holistic health.
Pat: I was premed as an undergraduate and did a masters in biology working on viruses and bacteria. I left school for financial reasons and taught at the University of Massachusetts at Boston for five years. Then I did doctoral work in science education — everything but my thesis. My interests turned from research to presenting science (making it understandable to everyday people) by demystifying it. However, I left that after my cancer three years ago. Now I use my science background in a less stressful occupation — medical textbook indexer. I work at home and am gloriously happy.
Terri: Can you talk about your experience with cancer? What kind of cancer did you have, what were your medical treatments and your reactions to the disease and the medical establishment?
Rita: First, I found a lump in my breast in 1974. I wasn’t sure for awhile what to do. After a few months I went to see my gynecologist. That was really my first experience in raising my consciousness because he couldn’t feel it. I wondered, “Am I crazy? Is it in my imagination?” For a moment I felt like standing up, walking out, and saying “OK, if he doesn’t feel it, fine.” But instead I took his hand and put it exactly where I felt the lump. After awhile he said, “Oh, yes, now I feel it.”
They wanted me to have a mastectomy right away (maybe four days), and sign the papers, at the time of the preceding mammography, for the mastectomy — just in case the lump was malignant. The worst thing was the thought of going under anesthesia and not knowing when I woke up whether or not I’d have a breast.
Pat: They tried to get me to have a mastectomy very fast, almost right away. They really put the pressure on.
Rita: I don’t know how I had the courage to say that I wouldn’t do that because they weren’t offering any alternatives. I argued with my doctor because he thought I was hysterical, wanted to run away, and wasn’t going to have treatment because I didn’t want to do what he wanted me to. When I said I wanted time, then it turned out that an alternative was possible. I could have a needle biopsy to find out if it was malignant and then talk about a mastectomy. I had the needle biopsy and the result was cancer. I still remember that he told me over the phone that it was cancer. It was like he couldn’t tell me face-to-face.
After that I started exploring what I could do. I had the Harvard Community Health Plan and they wanted me to have a modified radical mastectomy, an operation in which they remove the breast and lymph modes but not the muscles (which are removed in a radical mastectomy). I consulted a couple doctors at Massachusetts General Hospital (I now realize they were ahead of their time) and they recommended a lumpectomy to be followed by a mastectomy only if necessary, depending on the type of cancer. I felt a lot of pressure to have the modified radical mastectomy which I did in June 1974. They found 6 of the 18 lymph nodes were malignant. That was not a good prognosis so I underwent radiation therapy. In those days there was no chemotherapy (it began in 1975).
They wanted me to have a mastectomy right away. The worst thing was the thought of going under anesthesia and not knowing when I woke up whether or not I’d have a breast.
I was well for about four years until in 1977-78 I developed a cough that wouldn’t go away. I had x-rays and the whole work-up; nothing showed up. After a year and a half of this worsening persistent cough, x-rays showed fluid in my pleura (the lining around the lungs). When they removed the fluid they found tumor cells in it. Then more consultation at the Sydney Farber Cancer Institute, and on and on, here and there. The suggested treatment was to remove my ovaries. The idea was that breast cancer in premenopausal women (I was 44 then and still menstruating), can be sensitve to estrogen. The cancer feeds on estrogen. By removing the source of estrogen from the body, the cancer could be shut down. The fact that the cancer remained dormant for so long raised the suspicion that it might be estrogen-dependent. So, I had my ovaries removed in March 1979.
By the time I was recovering in the hospital I had totally lost confidence in the medical establishment because I had a recurrence. And when I had the recurrence they couldn’t diagnose it for one and a half years. Four months before that diagnosis, x-rays had shown something “funny,” a retake was negative, so my doctor was never informed. I realized that I was on my own.
I started reading about nutrition, physical exercise, and the Simonton approach to cancer. This method uses visualization, relaxation, exercise, and imagery as an introduction to emotional work to increase the resistance in the immune system. I accepted the idea that getting cancer reflected some weakness in my immune system, and maybe I could strengthen my immune system by proper nutrition, exercise, and by learning ways to deal with stress. I started Simonton training by going to workshops, and I started trying to apply the ideas to my own case. I learned of many ideas about the importance of the mind, the emotions, and always remembered that I am the one who knows best what is going on with my body. I use myself as the main observer, and have tried to learn as much as I can about how to strengthen myself.
Pat: Three years ago, when I was 37, I learned that I had breast cancer. I saw a woman resident doctor at Beth Israel Hospital (teaching hospital for Harvard University). She followed me for about a month to see if there were any changes, or whether it was a cyst. A month later she thought it had gotten slightly larger, and suggested I go to the breast clinic. There I was examined by three or four doctors. They didn’t think it was serious. There was a 98% chance it was benign. I was told it should come out the next day.
They asked if I would like to participate in a study dealing with the relaxation response, and attitude and healing in breast cancer. If I would, they would teach me how to relax. I was excited about the word relax, so I said yes. I was to have a lumpectomy without anesthesia, it would take only ten minutes. It took 30 minutes, and I was awake. They inject Novocaine into your breast, then cut, then inject more Novocaine. I knew by the look in the doctor’s eyes that it was cancer. I was asked to come back in two days to see the doctor at which time I was told it was malignant. It was very small though, stage one breast cancer. The tumor had been less than 0.5 centimeters and they recommended that I not have a mastectomy. Instead they recommended five weeks of radiation therapy and what they called a radium implant.
My reaction to the knowledge that it was cancer was shock and emotional devastation. My life flashed before my eyes. I felt I hadn’t lived, that my life had been geared towards doing what I should: studying hard, being intellectual and smart, and pleasing people. I thought I was going to die and decided to do what I wanted to do with my life. I looked at my life and at what really made me happy and gave me joy. Dancing gave me joy, drawing and color gave me joy, and learning about myself and writing. And that’s what I was going to do. I decided I wanted to live. I was lucky to have Rita as a friend.
It was very hard for me to discuss life at that stage. One doctor said that I must be willing to take chemotherapy along with the radiation if they found the cancer had spread; … “If you know you won’t take chemotherapy under any circumstances, then it is silly for us to do the operation.” So, before I had found out whether or not it had spread, I had to say whether or not I would take the treatment — which would be a heavy treatment. I was overwhelmed. The week before I was thinking about how to get money for completing my doctorate in science, now I was thinking I would like to live five or ten years.
I had five weeks of radiation therapy which I found very difficult. My experience with the other women at Beth Israel, who were undergoing similar treatments was one of denial. They denied that anything serious was happening. I was very bereaved for myself and angry at my doctor, especially when he stood me up for an appointment. I was angry at the medical staff who seemed to treat it casually. I felt that insufficient care was given to the person with cancer who needs to be treated with lots of love and care. Of course there’s a stigma about needing help. Be strong. There is a whole “be strong” and efficiency model going on out there. I was lucky to have a lot of support from friends.
That summer I had three operations, five weeks of radiation, and one week with the implant. When it was all over, I was emotionally drained. I’d learned an incredible amount about people and about myself. I found I had to, for my self-preservation, change the way I looked at people, and who or what I let into my life. I also learned to accept from people. I’d always been very independent — I could do it on my own. When I was weak I found that I couldn’t, and had to learn how to ask for and receive help. Perhaps one of the biggest things I learned is how to say no. I think that I was very much a traditional woman who puts needs of other people first. I said to myself, “I’m not going to take care of anyone but me, I come first.”
Terri: How does having some scientific background help you cope with this situation as compared to other women who have no background in biological sciences?
Rita: Being a scientist, I was more in a position of understanding some of the words they would sling at me. However, that is only a really small part. They have a whole lot more information that what they give. This has a lot to do with what I think is the male-female dynamic. Women constitute 99% of the people with breast cancer. Nearly 100% of the oncologists, surgeons, and staff are men. They call the shots in terms of timing of events and the treatments. You can know what you want, but with what you are offered, you still have to either take it or leave it.
Another thing I think is important is this stuff about how you’re supposed to be a good patient. In my case, the surgeons liked that I was a scientist because I would understand their way of working, their mode of operation, their treatment. So, I was under even more pressure to be a good patient than somebody who is more ignorant or questioning. I had a doctor’s degree so I was one of them, almost (right?).
A couple of important mistakes were made during my treatment. While I had the cough another problem arose not directly related to the cancer. I had a rectal abscess and was hospitalized for a few days during which time they took x-rays-routine before any surgery. The resident doctor asked, “Do you have a cold, any virus?” I said, “No, I don’t, why?” He told me, “There’s something funny, I see a shadow in the chest x-ray. I’ll take it again.” The second x-ray was apparently fine. The first mistake — I didn’t call them on that. This was four months before the discovery of the pleural effusion.
Following a request to see my medical records, I confronted my doctor about how in the hospital they really had picked it up and hadn’t communicated it to him. He agreed, saying that in the hospital the communication really breaks down. So, four months passed before an important piece of information reached my doctor.
The second mistake — this one, a horror story. Before the oophorectomy I felt a lump in my remaining breast. I told my doctor about it and he forgot about it. I called him up just before the oophorectomy and reminded him of the lump. He scheduled a mammography two days before the oophorectomy. It turned out that it wasn’t another lump, but for the moment it looked like I was going to have another mastectomy. And, he had forgotten about it!
Pat: For me, my ability to think analytically and scientifically, in a way, did not matter a bit. When we were discussing data from this or that paper, and the percentages that lived five years, or whatever, my mind did not want to process at that intellectual level. My gut reaction was, “My god, I’m going to die.” I was happy bringing a trusted scientific friend along. I guess my scientific background did help me feel a certain strength behind confronting my radiologist when he stood me up, and when I told him I wasn’t going to be another piece of data, and that what I needed from him was to hold my hand sometimes and not treat me brusquely.
By the time I was recovering in the hospital I had totally lost confidence in the medical establishment because I had a recurrence. And when I had the recurrence they couldn’t diagnose it for one and a half years.
I want to get back to the business of the initial diagnosis. When I was receiving radiation, not only did I sit among the “deniers,” but I also met at least three women who had been misdiagnosed. One was a 32-year-old graduate student. Her doctor had told her it was nothing. A year later it had metastasized so much that they wouldn’t operate, they wouldn’t do a mastectomy. So, with the fact that in a five-week period I met three people who were misdiagnosed, and having heard Rita’s story of having to show the doctor the lump, I’m convinced that you really have to take responsibility for your own body.
Terri: How do you see feminism and cancer as related?
Rita: One thing I learned is that cancer is just one more disease. I no longer see it as so unique. What is different about cancer is that the treatments are particularly horrendous and there don’t seem to be any more efficient treatments.
I now tell women when they get a diagnosis of cancer, that the first thing they should do is take assertiveness training because they will have to deal with a medical profession that comes down on them reinforcing all the little girls’ roles. Also, they will have to deal with all the fears and anxieties of family, friends, and lovers who, because ‘they love you,’ will want you to be obedient to save yourself. Following the assertiveness training, women should learn about alternative approaches and then decide what to do.
Pat: I think of cancer as another disease. Some people have a weakness or predilection for getting cancer. This was true in my case, it was in my family. More significant to me is the fact that I had breast cancer. It is the most objectified part of my body, the part most owned by male-dominated society — its meaning in sexuality and nurturance. The idea is connected to women not owning their own bodies. As adolescents girls are taught to dislike breasts, or they are supposed to belong to men, or be for another people. Women’s sexuality is supposed to be for other people. One of the greatest lessons I’ve learned from all of this, and I keep learning it at deeper and deeper levels, is to be for myself. I exist in the world for no one else. I feel a great resurgence of strength, like I’m going to get up and march about breasts. It is a very feminist issue, the issue of women’s bodies.
Terri: Would you like to briefly talk about what you’ve been doing since you finished your cancer treatment? Rita, I know you’ve been teaching courses in Tapestry,1 please talk a little about some of the alternatives that you see and the work you’ve been doing lately.
Rita: Well, one of the turning points for me was, as I mentioned, when I started reading about the Simonton method. The book made a real impact on me but I still wasn’t sure how much I understood. When they came to town I participated in a two-day workshop. I then understood that good medicine meant looking at the whole mind and spirit. So, when I got it, I got it — you really can’t look at the whole illness process without looking at the whole person because the emotional component will affect the body. I then took a five-day training which they give to counselors who work with cancer patients. I wanted to make this approach available to more women. So, I started working with a friend, and the two of us have given a class or workshop on what we call Women Moving Towards Health. It is based on the Simonton method to which we added a feminist perspective. One problem with the Simonton method is that it does not present enough understanding of the particular stresses and the sexism that women encounter when they have a health crisis. The idea of the course we taught is that once you empower yourself and lead a better life, your body is going to be strong and you will want to live and enjoy the better life. Another problem with the method is that it is still blaming the victim.
You really can’t look at the whole illness process without looking at the whole person because the emotional component will affect the body.
Pat: The blaming the victim critique of’ the Simonton method is mentioned all the time. For instance, if a person has high blood pressure that may be connected to anxiety, tension, repressed anger, or whatever, there are two ways to treat it. One way is to say, “Oh well, if that’s true for certain kinds of people perhaps we can learn how to reduce tension.” The other way is to blame the victim and say, “Well, if you weren’t so angry and uptight then you wouldn’t have hypertension.”
It is most important to mention that I’ve been in therapy. It is very important to my life’s changes. I think that intellectuals in general are so much against therapy. It is seen as touchy-feely stuff and as upper-middle class. I’ve been earning only $5,000 a year for the past five years and doing therapy. People fail to see it as a strength to help take control of your own life and to take risks. I’ve needed support and help and knowledge to be able to change. I want to give therapy a good name, not all therapy for all people, but for myself.
Rita: I agree. I went to therapy in order to do some of the emotional work I’ve done. It has enriched my life incredibly. My life is now much better than it was before the recurrence. Can you believe that?
Pat: Me too — we’re two of the happiest people we know.
Terri: Any final encouraging words for people who might face serious illness?
Rita: Stand up for yourself!
Pat: Love your body, love yourself!