Letter from Uganda
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Cancer in Uganda

Cancer education and screening are rare in Uganda.

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By Gertrude Nakigudde as told to Sue Rochman

Letter from Uganda

Cancer support comes to Uganda

By Gertrude Nakigudde as told to Sue Rochman


I was diagnosed with breast cancer on Feb. 28, 2002, at the age of 30. When I first found the lump, I ignored it, because I didn’t think it would be breast cancer. Six months down the road, the lump was getting bigger, and I’d find myself touching it every night. That’s when I went to the doctor. He did a biopsy and then broke the news that it was stage I breast cancer.

Immediately, I went for a mastectomy and then started chemotherapy. Shortly before my surgery, I searched for support and information but found none. Nobody told me that people survive breast cancer and lead quality lives after treatment. I began my journey with anger, disappointment and fear of death. This led me to my role today as the public relations and advocacy secretary for the Uganda Women’s Cancer Support Organization (UWOCASO), which I co-founded in 2004.

UWOCASO is the first cancer support organization in Uganda. We create awareness about cancer, early diagnosis and treatment, and support women and families experiencing breast and cervical cancer. Here, cancer is not a priority disease. HIV/AIDS, tuberculosis and malaria are the diseases that get government attention. There is no funding for organizations like ours, and little awareness about how cancer is diagnosed or treated. People who get cancer are frequently diagnosed late and die of the disease. So when you tell someone you have cancer, they expect death the next day or the day after.

We don’t have counseling services or support groups, and overwhelmed medical personnel don’t have time to talk to patients. They just say, “You have cancer. You will have a mastectomy, chemotherapy, radiotherapy and tamoxifen.” Those words were new to my vocabulary, but there was no further explanation. When my treatment was over, I asked my doctor whether anything could be done about the situation. He suggested that I do it myself, because the government had no money to do this type of thing. So, I did.

I asked doctors to connect me with patients who had breast cancer, and I talked to these women about the problems we faced. That led us to start UWOCASO. We now have 25 members, but only 10 are active and speak openly about their cancer. Some feel it is a stigma and don’t want people to know they have it. And some have husbands who don’t want them to talk about it.

I have a full-time job as an accountant. Our support organization does not have an office, so people line up at my house and wait for me to come home in the evening. They ask me: How will I survive? What is going to happen to me? What kind of treatment should I have? I have very limited information for them. When we have funding, UWOCASO plans to open a resource center where cancer educational materials will be available.




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