Voices on Cancer is an award-winning Cancer.Net Blog series where advocates share their stories and the lessons they have learned about being a cancer advocate. Bárbara Segarra-Vázquez, DHSc, has been on the faculty at the University of Puerto Rico for 30 years and is the Dean of the School of Health Professions. She is one of the principal investigators of the Hispanic Clinical and Translational Research Education and Career Development (HCTRECD) program funded by the U.S. National Institutes of Health. Dr. Segarra-Vázquez is an active volunteer and advocate for many cancer-related initiatives.
My advocacy story
My cancer story began in November 2003 with a mammography reporting a “suspicious mass.” I was 42 years old, married, and with 2 sons: Daniel (14) and Diego (10). I started having mammograms in my 30s because I had a fibrocystic breast. In April 2003, I had a mammography, and it was negative. However, in October I felt a lump in my left breast, which I thought at first was due to changes in my menstrual cycle. But when the lump didn’t go away, I had another mammogram and that is when it all began.
The first surgeon I saw did not even look me in the eye. He did a physical exam and said, “I will schedule you for surgery, and if it turns out to be positive, we will deal with the node that is present in the axilla.”
I was confused. I asked, “But doctor, is this a malignant tumor?”
He said, “Well, I think so, but we will do the surgery and will know for sure.”
He left, and I started crying in his office. I realized I needed a doctor who would talk to me and explain what was going on. I got an appointment with another doctor, and the experience was completely different. My new doctor said, “This is treatable and manageable.” I could sense his sensitivity and interest in my situation. He has now been my surgeon and friend for more than 15 years.
I was diagnosed with stage IIB invasive ductal carcinoma. I can’t describe the fear that the news caused me. As a mother, my biggest fear was that my sons will lose me. I knew I had to give it my all. I had a lumpectomy (surgery to remove the tumor from my breast) and an axillary lymph node dissection (1 node came out positive). I had 6 months of chemotherapy, once every 3 weeks. After that, I had 34 sessions of radiation therapy.
I consider myself one of the lucky ones. I had a great network of family support as well as health insurance that covered all my cancer treatments. I was able to ask questions, discuss my treatment options, and seek reliable information. Unfortunately, not everyone diagnosed with cancer has these resources. After my first experience with cancer, I knew I had to give back. After I finished active treatment, I started helping people who were newly diagnosed with cancer. It is important for them to talk to people who have gone through what they will go through. Throughout my experience, I have noticed how talking to a fellow patient gives them a sense of confidence and empowers them to ask me questions that they might not ask their doctors.
In 2006, I began volunteering at Susan G. Komen Puerto Rico. First, I helped in educational sessions. Then I took charge of the education committee and was later invited to be part of its board of directors. I was president of the board of directors for 4 years. However, my research advocacy began when I had the opportunity to participate in the American Association for Cancer Research (AACR) Scientist↔Survivor Program. I did not know of the opportunities that existed as a research advocate. That meeting was eye-opening for me. After that, I applied to be a consumer reviewer for the Department of Defense Congressionally Directed Medical Research Programs (CDMRP), participated in the AACR Disparities Conference, and also got a scholarship to attend the San Antonio Breast Cancer Symposium. In 2015, I stepped down from the Puerto Rico Komen Board of Directors because I wanted to work more as a research advocate. I became a member of Susan G. Komen Advocates in Science, and in 2017, I became part of the steering committee.
One of the things that caught my attention attending all these meetings was lack of Hispanic advocates. So, I got together with 2 other colleagues in Puerto Rico, and we developed a program called Hispanics Increasing Diversity to Enhance Advocacy in Science (HIDEAS). Our purpose was to create a scientific advocate group of trained Hispanic cancer survivors who could participate in research proposal reviews, work with researchers, help recruit patients into clinical trials, and disseminate cancer research information in Puerto Rico and abroad. We recruited 15 breast cancer survivors and have been training them for almost 2 years. We have seen how they have developed new knowledge and skills. Some of them have benefited from scholarships that let them attend national meetings, and 1 of them was invited by a pharmaceutical company to join an advisory board.
In 2017, I had a breast cancer recurrence, and I had a mastectomy. This new encounter with cancer did not require chemotherapy or radiation therapy, which was a huge relief for me. I have been blessed with seeing my children grow up and to see both of them become mechanical engineers. They are better people because of the cancer experience we went through as a family. I have a mission and will continue to give back as long as I can.
Increasing Hispanic advocacy
Less than 1% of Hispanic people with cancer participate in clinical trials, so there is a lot of work to be done. We need more Hispanic science advocates to participate in the decision-making committees. To make that happen, Hispanic patients must get involved in advocacy. Here are some suggestions:
Get involved in a nonprofit organization involved in cancer research. Find an organization that is involved in your specific type of cancer.
If you want to be a great science advocate, take advantage of all of the different trainings available. Many nonprofit organizations offer free webinars, host symposia, and have materials available. Some organizations offer scholarships to patient advocates so they can attend meetings.
Volunteer to be part of decision-making committees. Many organizations and agencies, such as the U.S. Food and Drug Administration (FDA), National Cancer Institute (NCI), and Patient-Centered Outcomes Research Institute (PCORI), and pharmaceutical companies include patients in important committees. Sitting at the table representing Hispanic people gives others the opportunity to see you, listen, and appreciate the importance of diversity.
Visit cancer centers and academic institutions. Talk to researchers about how important it is for Hispanic people to participate in research. Offer to help them understand the culture better and suggest ways to reach this population. For example, Yale Center for Clinical Investigation (YCCI) collaborates with JUNTA for Progressive Action to increase the participation of Hispanic people in clinical trials.
You would be surprised of the impact that your voice can have. People do listen, but we have to speak. If we really want to eliminate health disparities, we need to be more inclusive in research and in clinical trials. At the end, it is a matter of justice and equity.
“Caring for every patient. Learning from every patient.” For ASCO President Dr. Monica Bertagnolli, this is more than just a presidential theme. To put action to words, she went out to local communities to speak with patients, caregivers, and oncology professionals. She and other ASCO members are responding to patients’ concerns and, at the same time, they are learning more about the challenges that exist in getting quality cancer care. These sessions were called “ASCO in the Community: Listening and Learning from Our Patients.” In January 2019, Dr. Bertagnolli visited San Juan and Caguas, Puerto Rico. While Dr. Bertagnolli was there, Dr. Segarra-Vázquez gave a presentation on cancer care from the patient perspective.
In 2018 to 2019, ASCO held a series of ASCO Presidential Town Halls with local groups across the United States to hear from patients, providers, and the general public about real-world barriers to quality cancer care and to talk about ways to provide the best care to every person diagnosed with cancer. These events were free and open to everyone. Learn about this town hall series.
Whether you were able to attend an ASCO Presidential Town Hall near you or not, we welcome comments from patients and caregivers about your experiences with cancer.