As a part of our Faces of Courage series, we are featuring a patient or caregiver story each month. Each one of our members has a unique story to tell, but they all reflect the intrinsic courage of those who face the challenges of cancer head on, with dignity, strength, and passion for life.
Our Patient of the Month for December is Leslie Pastén Rojas. Here is her story:
GISTory
My story with GIST began in the third month of my pregnancy with my second child, specifically during the ultrasound I was having in September 2017. That was the day my gynecologist found a mass near the uterus. At that moment he told me not to worry, that it was a fibroid that would later be removed during the cesarean section. But this fibroid was growing along with my son in my belly and by the ninth month, in May of 2018, the “fibroid” was already 15 centimeters long and my son was 54 centimeters tall. On May 16, 2018, my son was born. I had my “myoma” removed, and the doctor realized that it was not a myoma, but a malignant tumor, which immediately went for a biopsy. A week later, when they give me the biopsy results, they told me that my tumor was a GIST, stage IV and with metastases in the peritoneum. With my newborn son and the emotions of knowing I had stage IV cancer, it was a very hard time for me and my family.
I was referred to a specialist at my city’s public hospital, who told me to have a scan that showed I had various metastases in my peritoneum, some even measuring five centimeters. He told me that my state of health was very delicate and that I should go and enjoy the days I had left to live. I was confused, sad, desolated and I didn’t know what to do.
Leslie Pastén Rojas and her husband – La Serena, Chile
My husband, looking for a second opinion, found the Fundación GIST CHILE on the internet, filled out the registration form and 20 minutes later Piga Fernandez, president of the foundation, contacted him. She told us that we should travel to Santiago, to the Catholic University Clinic where there is one of the best GIST specialists in Chile. A week later, we traveled to Santiago, and the doctor indicated that there is treatment for my disease, that I should have mutational testing on the tumor and apply for the medicine. But a month and a half later, though I had already started taking Gleevec, the results of the mutational test came back indicating that my tumor mutation was not the one indicated for treatment with Gleevec. At that time, the doctor told me that my tumor was possibly wildtype and that I should stop taking the medication. Once again, I felt devastated and did not know what to do. All I could think about was having the possibility of not seeing my children grow up.
At the next check-up, my doctor told me that I should have another mutational test on the tumor, a more specific one, and send it to a laboratory in the United States, to see if another treatment was possible. The test was performed, and after approximately two months, the results came back. They indicated that my tumor’s mutation was exon 10, and my doctor told me that I should start treatment with Gleevec again, since there are studies showing that imatinib is sensitive to this mutation.
Happy and hopeful, I started the treatment again and three months later, at the next check-up and scan, the results indicated that I no longer had metastasis, only a few small nodules. Three more months passed and another check-up and scan, and those the results indicated that there was no longer presence of the disease. Happily, after two years of treatment, my tests keep showing no signs of the disease! I will continue with treatment, and evaluations every three months, and every six months a scan, and stay in contact with the beautiful GIST community of GIST CHILE.
Coping with GIST
Paying attention to what I eat, enjoying every day with my family, friends, pets and nature around me
Advice for Fellow GIST Patients
Always look for a second opinion, trust in your doctors and join to a GIST community
Hobbies I Enjoy
Reading, spending time with my sons, gardening
Motto
Don’t worry about something, take on it. “No te preocupes acerca de algo, ocúpate de ello.”
Each member story reflects the individual patient’s experience. GIST is not one disease, but a family of diseases and each patient has a unique set of symptoms and manifestation of the disease.
Criteria for Patient of the Month
- Patient must be a member of the LRG GIST Patient Registry
- Patient is an active member of the Patient Registry, continually providing medical updates
- Patient’s record should be at least 80% up-to-date
- Patient has GIST Patient Registry Online
- Patient must agree to provide consent to share his/her story to our GIST community on our website and social media
Criteria for Caregiver of the Month
Caregivers are an important team of family and friends. They allow a patient to depend on them for support through their difficult journey as well as help with various tasks such as cooking, housekeeping, transportation and so much more. In conjunction with Life Raft Group’s Patient of the Month, we are showcasing Caregivers of the Month. We want to hear stories of the selfless supporters that stand beside our GIST warriors.
Interested? Contact Sahibjeet Kaur, LRG Patient Registry Supervisor, for more information: skaur@liferaftgroup.org
