Part of: One In Ten

Interview: Matuschka on Breast Cancer

published on 17 November 2000

Breast cancer activist Matuschka talks about the medical errors made in her case, her mission to prevent the same happening to others and the difficulty of accepting the loss of her breast.

Breast cancer activist Matuschka talks about the medical errors made in her case, her mission to prevent the same happening to others and the difficulty of accepting the loss of her breast.

‘I found the tumour myself, the doctor said it wasn’t cancer. My mammogram didn’t show it. Three mammograms didn’t show it. Then went to the best professor in New York, and he said: "There’s nothing to worry about." But I said, "I want it out immediately. My mother had died of breast cancer, when she was 41, she was diagnosed when she was 39. And she was given the wrong information." The reason why I was going to these specialists was because of my mother’s death. There was no breast cancer awareness campaign at the time.’

Matuschka had a lumpectomy and the tumour was tested. The professor summoned her to tell her the result of the test. ‘He said: "It could be cancer." And he said if I didn’t get all the cancer out, I could be in a very bad condition. He recommended a mastectomy.’ Matuschka’s breast was removed. This was 1991.

‘Then I had to go to an oncologist, and they kept looking at the pathology report and saying: "Why did you have to have your breast removed for something like this?" Then, when I went also to find out if my lymph nodes had been involved, he said: "You have no cancer in your breast or your lymph nodes." So I said: "So why did my breast come off? I was under the impression that I’d had my breast removed because there was cancer."’

‘I sued him and won the case. I did an investigation, which took two years and included taping his conversations. You’re allowed to do that in New York. I just couldn’t believe he had made this mistake, but it turns out that the pathology report and his doctor’s notes were different. In the court case, they said it was a typographical error, that he had mis-transcribed his notes. I sued in 1993 or 1994, and it took five years to get to court.’

‘When I found out that he had erred, I went right into activism. I figured, here I was – white, middle class, college educated, best insurance policy, best doctor – and I had to suffer that. What was going to happen to all those people who don’t speak English, don’t have access to information and don’t have health insurance?’

‘If I had listened to my doctor at first when he said: "There’s nothing to worry about, you don’t need this out." If I had not taken the position that my mother was given the wrong information and said: "Hey! I want it (the lump) out tomorrow," I would have been in worse shape, obviously, but I would have still had a breast. I’d had all the surgery I needed in the first operation, the lumpectomy. There was no need to remove my breast.’

‘So, I figured, if this is happening to me, I need to go out and get more information. So I jumped on the bandwagon. I was part of the early breast cancer movement in early 1990s America. I protested and pasted my posters all over New York and Long Island, and I tried to get my photographs published.’

I will continue to use my body as a statement because the more you see a woman with one breast, the more you accept it.

‘First, I took pictures of other women, but that didn’t work because everyone said: "Oh, the women don’t look attractive, they’re too angry." So, because I had been a model, I said: "Well, I’ll step in. I’ll take these self-portraits." I made them look very romantic and very beautiful. This, it seems, is the only way to get the message across. But I still could not get my pictures published anywhere in America, including Ms magazine and Mother Jones. And I was amazed because some magazines in Europe would publish my work, but not in America.’

‘I was fortunate enough to be at the first Breast Cancer conference in 1991 in Washington DC. I’d brought my posters. I’d made one called "Vote For Yourself", which was sponsored by a woman’s group. I was not allowed to display the poster or sell it, so I wore it. I put it on the front and back of my body like a sandwich. A correspondent from The New York Times saw me walking around with this poster on my front and back. It was a pretty striking image and she turned it into a story. The New York Times called me and asked me for my portfolio on breast cancer. The requirements were that (to be publishable) it must be in colour, vertical and can’t show any breast. And I said: "Well, I’ve got a picture!" I had a picture of me with a white dress cut away where the breast was. And that picture really helped launch the breast cancer movement. It’s still considered the Mona Lisa of breast cancer.’

‘I’m delighted to be involved in this shoot, because I think it’s a way to embrace women who have one breast or no breasts or breast cancer. Unfortunately, there is really no great remedy of rebuilding a breast. There are many women who end up having their implants removed or who can not have breast reconstruction. I have been vacillating about that (reconstruction) for years. But I’ve seen enough pictures of women who’ve had their breast implants removed and it looks much worse, to my eyes, than a mastectomy. And it’s more surgery. A muscle here, a muscle there. More scars, more pain, skin stretching, skin sagging.’

‘Summer is always a really hard time for me. There is such a big emphasis on breasts. So many women are getting implants and everyone has got these padded bras and push-up bras. Half these women don’t even need to wear a bra, but they want to make themselves look as though they have large breasts. So when I walk down the street in the summer I get these very, very strange looks. It isolates me and makes me relate to people differently, even though I’ve accepted myself.’

‘It’s difficult when I take my clothes off and walk into a locker room. And it’s difficult when men meet me, not necessarily because they can’t deal with the image, it’s that they might think I’m going to die because surgery usually indicates worst prognosis. If you think I’m diseased, if you think I’m unhealthy because I’ve only got one breast, you might not want to get involved with me in case I die of cancer.’

‘A man in a wheelchair, I happen to find it very sexy. If someone had one leg, I wouldn’t have a problem with that at all. Even if men have testicular cancer and have one testicle removed, it’s not the same as having a breast removed because a breast is way out there and it’s so much more transparent. That’s the thing about breast cancer it’s so external, like an arm or a leg. I will continue to use my body as a statement because the more you see a woman with one breast, the more you accept it. After all I’ve done, and I’ve been out there marching and campaigning for years, I’m still amazed at the way people look at me.’

‘I was in denial for many years about having a breast removed, because I was so into my art. I never dealt with the problem or mourned for my breast. I was right into how can I make this into art? What can I do to make a contribution? I was so involved in demonstrations and conferences and the making of the art, I didn’t get a chance to really deal with the fact that I will be like this for the rest of my life, that I will have to look at myself every day and there is no denying that I had breast cancer.’

‘I was constantly trying to turn it into a positive. And I don’t regret doing that because, number one, I helped save many women's breasts. I can quote five letters from women who have come to me and been told: "You don’t have to have your breast removed. You don’t have to have radiation, it’s your choice." They still have their breasts and they’re still alive. So I have helped them, and their husbands probably and, to a certain extent, I must have helped myself.’

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