Parween H.

Diagnosis: Infiltrating ductal carcinoma breast cancer, stage 3, tumor was 3.2 centimeters
Treatment: Mastectomy and CMF chemotherapy, Tamoxifen

Profession: Testing and evaluation consultant

When I realized how serious my diagnosis was, I literally didn't know if I was going to live. We were in Pakistan, where my husband and I live. My son was living in Boston. We decided the best medical treatment I could get would be in Boston. And I wanted to be close to my family. If the prognosis was that bad, they wanted to be near me.

My husband, who's an aeronautical engineer, now teaches part time. I'm an educational psychologist with a Ph.D. in educational testing. I've retired as director of education research at the Board of Secondary Education in Karachi, Pakistan. I took voluntary retirement two years ahead, in 1994. I was 58 at the time. But soon after retirement, I was asked to work as a consultant for World Bank on examination reform. I found the work very satisfying.

In March of 1995, I noticed a lump in my right breast. In April, they did a needle biopsy and they found infiltrating ductal carcinoma. I'd had a lump in the left breast earlier and had a biopsy in Pakistan. That was 1991. It was benign. Between that time and '95 when I was diagnosed, I had only two mammograms. I didn't have one every year. I guess I relaxed too much. I did self-exams almost every day after the first lump, but then I got more relaxed. But self-exam is how I found the lump.

They thought maybe it was another benign lump. I was optimistic that it was, so the shock was greater when it came out as a positive malignancy. I felt very cheated because I was feeling so well. I never thought, "Why me?" but I did think, "Why now?" I was thriving, working, active, traveling in the desert, living in rough conditions, not feeling tired.

After diagnosis I was living in a daze. We were going through all this discussion on the phone with the family in the States. My daughter was in Portland, Maine, in college; my son was in Boston; and my sister lives just outside of Boston.

My doctor, Barbara Smith, gave me the option of a lumpectomy or mastectomy. I asked what she would do and she said she'd have a mastectomy.

I traveled to Boston alone, in a daze. My husband had a commitment in Moscow.

When I woke up I was throwing up so they kept me two nights in the hospital. Otherwise, the surgery was not bad.

I came home from the hospital in the night and the next morning I was making my own tea. That made me feel good because I had been afraid the mastectomy might limit my abilities. I still had the drains in, and after the doctor took them out, I had to go back a couple of times because some fluid was accumulating in my chest and we had to aspirate it.

My daughter helped me wash my hair the first couple of times. I had been expecting the worst. I thought I would be all alone in a new place.

I didn't want reconstruction. If I had been younger I might have been concerned. I did go for a prosthesis, more for the balance.

During chemotherapy, whenever I focused on professional issues, it helped me keep my mind off the disease, just as meditation and housework did. In the end, chemo was OK, but it was like a nightmare before starting. The hospital was helpful. My oncologist, Dr. Michael Seiden, helped me develop a positive attitude during treatment and afterwards, too. At the hospital, doctors and nurses discussed side effects. But no one told me your scalp stings when your hair begins to fall out.

I was completely bald after my second cycle of chemotherapy. I wore a wig mainly for comfort - my head felt cold. My hair grew back in thicker. I stayed in the States for nine months during treatment.

I felt good about my treatment. I thought, "I'm being treated at one of the best hospitals in the world." Of course, there are many people who have been treated in Pakistan and they are well. We all do the best we can in terms of the doctors and treatment we choose within our means.

As time goes on, every time I come from a checkup, it's like a landmark and I feel more confident it's behind me. I belong to a support group, which I especially needed, being away from my own network at home.

I'm on Tamoxifen. In the beginning, I had numbness in my legs from time to time. My doctor has watched that condition.

My sister has been talking about the pollution in Karachi for years. I had to drive 45 minutes to work through the thick of Karachi, which is very polluted. I worked there 28 years and I was exposed to carbon monoxide all that time. Our emissions are not well controlled. That may have contributed to my cancer. My daughter would say, "I'm suffocating. How do you stand it?"

In Pakistan there is some shyness in talking about breasts, about talking to your doctor and feeling your husband is not going to be happy if something's wrong with your breast. It's not talked about. Friends in Pakistan would say, "You will be all right. I had it 10 years ago." I didn't even know they'd had breast cancer. I'm trying to get some kind of consciousness and awareness of breast cancer in Pakistan. I found so much sustenance from a support group at Mass. General. I am not hesitant to talk about breast cancer.

I have been talking to doctors and hospitals in Pakistan, about women sharing their thoughts and experiences about breast cancer. Perhaps we could start by talking on the phone. A lot of women are illiterate in Pakistan so a lot of materials from the U.S. about breast cancer wouldn't be of use. We need more oral help for women in Pakistan.

Only a small number of women who are well off are getting regular checkups in Pakistan. A lot of women put it off. They are the only ones working for the family, cleaning, cooking; they feel they can't take time off for treatment. And then there's the cost of treatment.

I come to the States once a year for checkups. I like to leave Karachi in the summers when it's very hot there. We live by the sea. It's nice to be there in the fall.

Now I'm fairly normal. I exercise. I get a little swelling in the arm. I am right handed and the mastectomy is on the right side. I don't lift suitcases and heavy things on the right side.