Samia Al-Amoudi, MD, is director of the Sheikh Mohammed Hussein Al-Amoudi Center of Excellence in Breast Cancer in Jeddah, Saudi Arabia, where Sara Bassam interviewed her.

You are the leading voice in Saudi Arabia, and even in the Arab world, promoting not just awareness of breast cancer, but also open and frank discussion about it. You have done much of this through your column in the newspaper Al-Madina, since 2006, the year you were diagnosed with breast cancer. What inspired you to start your column?

I had been writing since I was a student, about women’s issues in general. When I got this cancer, I thought it might be good to use my column to write the story of my journey with breast cancer, so I could use it as a tool to spread knowledge, spread the word, break the silence. Once I was diagnosed, my family kept giving me advice not to tell anybody, to try to keep it low-profile. To me, this was surprising, that people deal with cancer in that way. And then I thought, well, cancer by itself is a stress, so I don’t need the additional stress of wondering if someone knows about my cancer or not. In addition, it’s my responsibility as a woman and as a doctor to try to help women avoid what I have been through.

You spoke to me earlier about how you first discussed your diagnosis with your children by asking them what a friend of yours with breast cancer should tell her kids. How has this affected your family?

First of all, for the children, we think they won’t understand, that we don’t need to give them this horrible information. And I can tell you from my own personal experience that this is not true. They do understand. They feel, and they hear about it. They understand that something wrong is going on. And if we do not tell them, this might affect them in a very bad way. When I started to talk to my children, some people thought I was not concerned about their feelings. From experience I could tell you, after five years, that my kids are coping very well. And this is because they were informed from the beginning. I was very honest, very clear. I gave them the information gradually, according to their age—Abdullah was 13 and Esraa was nine.

To give you an example, demonstrating that they are affected but they do not express themselves like adults, one day Esraa came to me and said, “Do you think when I grow up, I will have breast cancer like you?” It was shocking to me that a nine-year-old girl can feel that way. I had to be honest, without overreacting or exaggerating things. I said, “Listen, Esraa, any woman in the world could have breast cancer, but it is not necessarily true that you will have it. This is one thing. Second thing, now you see what I am doing: I am spending a lot of time outside, working hard, and sometimes I worry I am not spending enough time with you. But you know why? Because, in the future, I want you and your friends to say, 'Oh, I remember that in the past there was a disease called breast cancer, but now it does not exist anymore.’” The support is there, thank God, for me from my family, from my uncle, my mother, my sister.

Your children went on to write their own books about their experiences with you while you were battling breast cancer.

Breast cancer, we always say, is a disease of the family. It’s not a disease that affects only the woman. And it depends on the way you react, the way you deal with the crisis. You need to go back and think about it. What are you going to do? Thank God, I always say it is a blessing from God. My reaction at the first second, when I felt the mass, was like that. And I managed to change it so that it has affected my children in a very, very good way. First of all, being a single mother, I started to change in the way I’m raising these two kids. I started to feel I had to prepare Abdullah for being independent so he could take care of himself and his sister, to be responsible. He knows how to go to the supermarket, pay the bills. Maybe if I hadn’t got breast cancer, I wouldn’t have done this. For Esraa, it is the same thing. So I started to raise them to be independent, to understand that this is life, they have to be strong, and they must have faith in God. Whatever is going to happen will happen. They have to know how to face all these crises. Today it is cancer; tomorrow it is something else. They have a long life, inshallah, and nobody knows what they are going to face. I think this has been an advantage to build their personalities in a much stronger way. For Esraa, I feel extremely proud of her. She doesn’t have the phobia or the common perception of cancer as a sentence of death. One day I was telling her, “Oh, Esraa, I’m extremely tired. I’m sick, you know. I’m sick.” She said, “No, you are not sick, mashallah [God keep you], Mama. Now you are not sick, thank God; you are okay. It’s a disease, like you say always, like hypertension or diabetes.” To me, this is what I wanted her to understand. This is the way I want her to cope with it.

Esraa and all her friends and classmates know, because every day she will take her book. Every day I would give her a pink ribbon or a pink ribbon sticker. I’m focusing on this generation. They talk about breast cancer, so they don’t have a phobia of cancer.

Tell me more about how you are focusing on this generation.

It’s fantastic. You can’t believe it! First of all, Saudi society is a conservative society. It’s not easy to talk about delicate, sensitive issues. And I understand that. I respect it fully. But it’s our duty and responsibility to stop and break that wall. When I started to focus and think of approaching schools for eight- to 12-year-old girls, some of the schools refused me. But my objective is not to talk about cancer. I am not giving them scientific talk because they are not in the age group that will be affected. The objective number one is to simply talk about breast cancer, to remove the phobia from the word “cancer.”

So I tell these girls they are my ambassadors. I ask them if they understand the word “ambassador.” I tell them, “King Abdullah has ambassadors in different countries. Why? Because if he wants to send a message to somebody in the government of England, America or wherever, he will send it through his ambassador. You are our ambassadors because you take the message to your home, and you tell your mom and dad that it is important that you take care of yourself and stay healthy and have the checkup every year. This is the idea. It’s a way of empowering women with knowledge. It’s a way of focusing on the new generation. One day I had a medical student come up to me and say, “Yesterday you were at my sister’s school.” I said, “Yes, how did you know?” “I know because my sister is in grade six, and she came home and she told my mother, 'You have to go and have the checkup.’” And I swear by God, I feel that this is the message that I want to achieve. This is my mission. It gives me the happiness of the world, as they say. Girls have a greater impact on their mothers than anybody else. They can touch their feelings in a better way. This is why when we talk about early detection, and why women must have mammograms, I tell women, even if you don’t want to do it for yourself, for the sake of your health, do it for your children.

Yet as a doctor and a mother, you did not detect your own breast cancer early, and you have written about how your role as a mother put the well-being of others above your own. How do you tell women that their own health must be a priority?

We mothers have misconceptions about our roles. We think that if we are taking excellent care of our kids, we are doing our job right. I can tell you from my experience that if your child has a low-grade fever, any mother will be willing to rush to the nearest hospital, but for her own fever, she will neglect herself. If her kids are having school exams, she will even postpone an operation. So our prioritization here is not right. What women need to understand is that when I got sick, I could not care for my kids—because I was sick! So we are trying, I am trying personally, to talk to women. I believe that a live example is the best way. The problem with our ladies is that they don’t have real-life examples. Being both a doctor and a patient myself, they feel that I understand their feelings. I know what is their agony, and they know that I am telling the truth because I’ve suffered. I took the chemotherapy. I know. So the live example is the best thing. But also the media, because there are a lot of women who don’t read or write, but most of them have TV. And through telling your story, it has a great impact on women.

How do you reach rural women and women who are not formally educated? I was reading in your brochure about a new mammography vehicle.

Yes, this is the project for the coming year. In 2008 I established the scientific chair for breast cancer research. In 2011 we started the Center of Excellence in Breast Cancer. Now in 2012, hopefully, we will have the funds to have this vehicle so we can reach women in remote areas and women who do not have access to medical care.

You were also talking earlier about a new program for mute and deaf women.

One day I was invited to have lunch with a club for the deaf and mute. There I met HRH Princess Sita bint Abdullah bin 'Abd al-'Aziz Al-Sa'ud. And we were discussing how this group of women is neglected. They aren’t getting the health care that they need. It was surprising to me to know that we have over 750,000 men and women with hearing problems. The first thing I did was to learn sign language. They ran a course, here in the Center. And I took this course, committing myself as a doctor, along with my team of administration here. Then we started to change all the signs in the Center to have them in sign language as well as in Arabic and English. That way if a deaf woman comes who doesn’t read, she could understand the signs. After that I wrote that book about breast cancer, and thanks to God, this month we issued it in sign language also.

Tell us about the other kinds of support you have, especially international support.

I’m a member in the United States Middle East Partnership, which was launched by former First Lady Laura Bush in October 2007. It’s a partnership between the US and different Arab countries. Also, Susan G. Komen from the United States is a partner organization. We have been helped a lot from their experience. I always keep saying that Saudi is a rich country, we have the best technology, and we have the best doctors, but what we lack is the experience of these people. Susan G. Komen is the largest foundation for awareness, education and advocacy, and they’ve been doing this for the past 25 years. It’s not wise to reinvent the wheel. We can learn from their experience and adapt it to be suitable for our culture.

Is there a particular challenge in speaking to Saudi women that you don’t see outside Saudi Arabia or the Middle East?

This is a very good question. Yes, because here it is a closed community. It’s not easy for women to come and talk about themselves. We do not use the media properly. We don’t talk about these sensitive issues. Also, for example, if women admit they have breast cancer, they worry that people will not propose to their daughters. There is a misconception that it will be genetic, a disease in the family. Awareness of the importance of early detection is not yet high. But I can tell you from my experience that there is a tremendous change in the perception and the attitude and awareness if you compare it to three or four years back. This change is everywhere now. People talk about it. They see the campaigns everywhere.

You’re working on a book about health rights for Saudi women.

Yes, it’s mainly for breast cancer patients. The first objective is to empower women so they understand their rights. Breast cancer patients have to have access to care. Then there is a misconception that women must get permission from their male guardians. In Islam, and by law and regulations, even in the Ministry of Health manual itself, as an adult, a man or a woman is in charge of his or her own health and his or her own health care. There is no need for the consent form to be signed by a male guardian. But some doctors don’t know that this is not the rule, and many women will not sign by themselves because of the way we have raised our daughters to respect their husbands and their fathers. So it is tradition. It’s not something that has to do with Islam or the law. I am trying through this book to empower women and help health providers by clarifying that these are the official documents and rules of Saudi Arabia, and the others are just tradition. It also says in the law that it is fine for her husband to sign, but she has to sign as well.

Do you think that more women with breast cancer will be cured because of your work?

Unless we get ready, studies have shown that the number of cases is going to increase. But with awareness, the number of cases is not the problem: It is the number of advanced-stage cases. If you have breast cancer that is found early, we can treat it. The success rate is about 98 percent. The taboo? Yes, definitely. The taboo will change, maybe even in this generation.

What would you like to see happen in the future?

I want there to be a day where we have a world free of breast cancer. I would like to see more empowerment of women, and more focusing on the new generation. Maybe I couldn’t do much for myself, but I am trying to do a lot of things for my daughter, so she can live in a world free of cancer.

How can people help?

When people like you in the media talk about breast cancer, I think this is the greatest support, by growing the attention to this critical issue. You are increasing awareness.

	Alexandra Avakian (www.alexandraavakian.com) became a photojournalist in 1984, and leading magazines have published her work regularly ever since. Her book Windows of the Soul: My Journeys in the Muslim World received wide critical acclaim in 2008. She is also a two-time breast cancer survivor.
	Sara Al-Bassam is a graduate student at New York University's Interactive Telecommunications Program and a former staff writer for The Arabian Sun newspaper, published in Dhahran, Saudi Arabia by Saudi Aramco.