How the IDEA Changed My Life With a New Perspective on Cancer Survivorship

How the IDEA Changed My Life With a New Perspective on Cancer Survivorship

International Perspectives

Mar 18, 2020

By Aleesha Adatia, MD

I still remember the evening of June 6, 2019. I was at the Stanford Cancer Institute. My International Development and Education Award (IDEA) mentor, Dr. Lidia Schapira, the director of the Cancer Survivorship Program, warmly welcomed me and my colleagues to the Celebrating Cancer Survivors 2019 event. The room was filled with survivors, heroes, doctors, and nurses. It was an incredible place to be, full of super energy. I could see the smiles and excitement in the eyes of the audience while I eagerly waited for the program to start.

Celebrating Cancer Survivors event program cover

Cover of the Celebrating Cancer Survivors event program.

I will never forget my moments of awe when I heard about the advancements in cancer treatment, and my moments of sobbing when listening to survivors share their cancer journeys. I will never forget how happy the audience was after the event. It was like they were illuminated by a light from within, like their spirit and strength had been resuscitated. The gathering gave the survivors a new perspective on life, an inspiration to try sometime new, and an opportunity to make friends. I started to wonder, why isn’t a survivorship program part of the treatment guidelines? This is just as important as chemotherapy, surgery, or radiation therapy. One of the survivors said, “My pictures tell my story,” and I thought to myself, isn’t storytelling part of cancer management? Do survivorship platforms really address this issue? Do oncologists address issues other than medical treatments?

I started work as an oncologist at the Aga Khan Hospital in Tanzania in November 2017. My team and I gladly took up the cancer support group meetings which are held every 3 months. The support group meetings had been a peer-led event where a multidisciplinary team including nutritionists, yoga experts, and pharmacists educated survivors and their family members on several issues. After my return from the ASCO Annual Meeting and preceptorship under Dr. Schapira’s fantastic mentorship, I was inspired. I shared this experience with the team and the support groups began feeling like a platform for discussion and storytelling.

On June 7, 2019, I spent the day with Dr. Kavitha Ramchandran, an oncologist and a palliative care specialist at Stanford. She introduced me a completely new aspect of patient care. I later completed a free online training on palliative care from Stanford University and encouraged all my nurses to complete the training with me. With this inspiration, I completed an extensive training on palliative and supportive care at the Institut Curie, France, where I spent some time again on survivorship. I learned a new concept: therapeutic education.

Group photo at Dr. Kavitha Ramchandran's house

An evening at Dr. Kavitha Ramchandran’s house.

Therapeutic education is education managed by health care providers trained in the education of patients and it is designed to enable a patient or a group of patients and families to manage the treatment of their conditions and prevent avoidable complications while maintaining or improving quality of life. It boosts patients’ independence, helping them obtain and maintain the necessary skills to live more comfortably with their disease.

A lot of patients with cancer I know maintain that you become a survivor the day you are handed a cancer diagnosis. As one patient put it bluntly, “A cancer survivor would be someone who a) has cancer and b) is not dead.” Others define survivorship as crossing the finish line to remission or a cure.

The first definition feels overly broad, the second feels exclusionary. So I redefined “survivor” for our support group. I call it “a second chance at life.” Now the patients at Aga Khan Hospital Dar-es-Salaam benefit from survivorship events and therapeutic educations that offer a second chance at life by helping them find purpose, a reason to wake up with a smile, a place to gather, and everlasting friendship.

Group photo at Stanford University

At Stanford University, before our goodbyes.

My IDEA experience at Stanford made me realize two things. First, there is so much more you can do as an oncologist other than offering cytotoxic agents from your clinic. Second, patients’ quality of life is of high importance and should be prioritized by every health care provider.

One of the major hurdles in treating patients with cancer in the Tanzania is the associated financial burden; however, with the help of my mentors and the networks established during the ASCO Annual Meeting and through the IDEA program, I hope to be able to make a difference in whatever way possible, with whatever resources I have available.

2019 IDEA recipients at the ASCO Annual Meeting.

2019 IDEA recipients at the ASCO Annual Meeting.

The ASCO IDEA program is inspirational. The lessons I learned and the friends I made changed my life. I am blessed to have Dr. Lidia Schapira as my mentor and I am infinitely grateful to ASCO and Conquer Cancer, the ASCO Foundation, for this honor.

Dr. Adatia is a clinical oncologist at the Aga Khan Hospital Dar-es-salaam, Tanzania.

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