For Darshana Magan, 41, surviving pediatric cancer is a blessing. But she has learned that being cured isn't the end of the story.
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Leukemia survivor Darshana Magan believes strongly that survivors should be advocates for themselves.
Magan was treated for chronic myeloid leukemia at St. Jude Children’s Research Hospital bout 30 years ago. She received a bone marrow transplant, which included full body radiation and chemotherapy. It cured the leukemia. But the treatment caused several health conditions to develop years later. Treatment-related conditions that happen months and years after treatment are called late effects.
Because childhood cancer is rare, many health care providers may not know much about late effects and the needs of survivors.
“Often, survivors must help educate their providers about their needs,” Magan said. “Our fight continues as some of us experience long-term side effects from the chemo and radiation that cured us.”
Magan is now a participant in St. Jude Lifetime Cohort Study (SJ LIFE) She Magan, she offers this advice about talking with health care providers:
- Prepare a list of questions before your visit.
- Find a primary care provider who will listen to you. Let them know what your needs are.
- Always share a copy of your survivorship care plan. It includes a treatment summary and information about health concerns and needed screenings. If you do not have a copy, contact your survivorship care team.
Some survivors may avoid going to a health care provider because they fear getting bad news, Magan said. But the key is to catch problems early when they are more likely to be treated successfully.
“Am I anxious or scared? Of course I am, but I quickly remind myself of why I am going to the doctor.” Magan said. “It’s important to be proactive versus reactive. I have experienced long-term effects but have been able to avoid a worst case scenario because of my efforts.”
Magan started getting mammograms and colonoscopies to screen for breast and colon cancer at age 30. She sees a dermatologist for regular full body skin exams.
“Yearly check-ups and routine scans are vital to living a long and healthy life,” Magan said. “I remain healthy and most importantly, self-aware. I will always advocate for my health. Advocate for yourself, advocate for others by bringing awareness of late effects, and advocate for research in hopes that changes can be made to minimize the late effects faced by cancer survivors.”