Criolla's Story

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"My 'new life' started with a sharp pain that sometimes I had in one of my breasts. I told my doctor and she sent me for my first mammogram and ultrasound. I was young with no family history of any cancer, no risk, no hormonal therapy or birth control pills, I breastfed my children, etc.

"My tests came back negative, no lumps.

"Then began a pilgrimage from specialist to specialist for a biopsy that no one wanted to do; my family doctor was the only one who believed that something was going on.

"Months later I read Dear Abby letters in the newspaper about a lady with terminal breast cancer who had the same symptoms I had, that no one believed and she was finally diagnosed with advanced breast cancer.

"I clipped the article and I had an appointment with a surgeon again, gave him the paper, and as I had learned about cancer and knew what I wanted, I asked for an excisional biopsy.

"I was completely ignorant to the field of medicine, never knew someone who had cancer, I studied International Law and Philosophy.

"I had no internet, but I contacted friends from University who had just founded the National Breast Cancer Coalition (NBCC), today the biggest breast cancer research source that welcomes various groups who share the same desire of eradicating this pest.

"My husband did not agree with my idea that it might be cancer.

"My biopsy showed breast cancer, but the oncologist did not see the need to do something more, because the margins were clean. I kept learning day by day since I signed up as a volunteer at the best cancer center to learn and meet other patients. I said goodbye to my oncologist and asked my surgeon to have a mastectomy and chemotherapy. She already trusted me and she did the surgery. She found a second cancer, an invasive infiltrating cancer different from the one found in the biopsy.

"I had chemotherapy and I am a long-term survivor, but it could come back despite the years.

"I returned to the University encouraged by the cancer center that paid for my studies.

"I work now in the cancer center, but my most important work is as an activist for the NBCC.

"I was the first representative of my state, collecting thousands of signatures to bring to Washington, DC to demand budget laws for breast cancer. Working diligently with Senators and Congressmen, we successfully fought for rights concerning breast reconstruction, second opinion, protection at work, certification of technicians who handle diagnostic equipment, the right to be informed of health and protection of privacy.

"It is continuous work and every year we publish who voted for us in Congress and who did not support us.

"Besides this, I have another job as a linguist, translating and interpreting for patients who do not communicate in English. My idea was that if I had such difficulty convincing specialists in English, how tough would it be for people who do not speak the language or are illiterate.

"I saw my children finish school, college, and get married, but in the path, I lost too many classmates and patients that I will never forget and who were to me, an example of sacrifice and dignity.

"Each day I spoil myself, I celebrate it, and my losses made me strong, positive and grateful to my parents, children and God.

"I think my strength also had to do with my culture, born in Bolivia where women are independent fighters.

"I would like to add that it is important to reach out to all of those who feel isolated by their culture or language, by participating in the Spanish Discussion Boards. For me too it is important; I am just giving back what I received during my treatment.

"I know from experience with my patients that often they cannot ask questions or reveal their fears to the family in order to protect them or to maintain respect.

"Women and men who have been diagnosed will benefit from participating in a forum where they are not alone.

"I want to add that I was part of the only study of quality of life for women who do not speak English who had been diagnosed and treated for cancer of female organs which was presented at ASCO and was a way to change and educate the family and husbands about the reality of a woman who lost organs, that she is more woman than before.

"Hopefully more people will join and participate in our Spanish forums."

-- Criolla, Spanish Discussion Board Community Member

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