Cancer Survivor Influences Care Delivery for Young Adult Cancer Patients
Cancer patients, survivors, and loved ones work directly with clinical providers and staff to recognize gaps in support for young adults with cancer
Reviewed by: Anmol Desai, Young Adult Advisory Board Member
Written by: Lauryn Gerard
In July 2019, Anmol Desai suddenly began experiencing elbow pain that she assumed was the result of stress associated with her new job that required her to commute back and forth between San Antonio and Austin on a regular basis. “Maybe it’s just from all the driving,” she recalls thinking to herself. However, when her pain measured an eight out of ten according to her personal pain scale, Anmol’s mother was able to convince her to head to a local urgent care clinic to seek care from a clinician.
Anmol’s elbow pain was initially diagnosed as tendinitis. However, knowing her family’s history of rheumatoid arthritis and having knowledge of how her own thyroid condition can affect her body, Anmol requested labs to test her inflammatory levels. Her lab results indicated her inflammatory levels were high, and she was advised to follow up with her primary care physician. The following weeks blew past in a blur for Anmol and her family, as a variety of blood tests confirmed that her white blood cell counts were also high and her hemoglobin (red blood cell count) low, which led to a visit with a hematologist within days of that initial conversation about the pain in her elbows.
“I initially, thought, ‘Well, this is all kind of weird,’” says Anmol, “But cancer was never on my radar, as I was a healthy 25-year-old.” After more tests and an extremely painful bone marrow biopsy, Anmol’s diagnosis of acute lymphoblastic leukemia was confirmed. An oncologist delivered the news and was straightforward about the battle Anmol had ahead of her. Anmol and her family approached her diagnosis very methodically, agreeing that her health was of the utmost importance and that they would do everything necessary to ensure the best care possible.
While a cancer diagnosis at any age can be extremely hard to cope with, young adults, such as Anmol, who don’t typically fit into the traditional pediatric or adult cancer care models have a unique set of needs and circumstances, which often include concerns about building and caring for a family, identity, education, career development, finances, and more. While she and her family were focused on taking the steps necessary to get the care she needed, she was eager to connect with people in her same age group who were also navigating a similar experience.
“Everyone in the hospital where I received chemo was a lot older than I was, and it was a weird experience being the youngest person there,” she recalls. “I reached out to a friend from high school who I knew had the same diagnosis as me, and he mentioned that he had been involved in some young adult cancer advisory boards and found that to be very rewarding. After some internet searching, I found that the Livestrong Cancer Institutes here at UT Health Austin has a Young Adult Advisory Board that is open to anyone to join, and I immediately jumped at the opportunity to be a part of it.”
The Livestrong Cancer Institutes’ Young Adult Advisory Board is made up of young adult cancer patients, survivors, and loved ones who work directly with clinical providers and staff to recognize gaps in support for young adults with cancer and to rethink cancer care. Their personal experiences make them experts on what matters most to young adults navigating a cancer diagnosis. These young adult advisors work closely with the Livestrong Cancer Institutes on identifying needs in patient education, research, and evaluation initiatives, including the evaluation of the Livestrong Cancer Institutes’ CaLM Model of Whole-Person Cancer Care.
Anmol attended her first Young Adult Advisory Board meeting in February 2020, shortly after receiving her bone marrow transplant in November 2019 and just weeks before the COVID-19 pandemic suspended in-person gatherings in March 2020. While that first meeting was the only in-person meeting she’s attended, she has remained involved virtually since and has helped provide guidance to UT Health Austin clinicians on how cancer treatment and services should be delivered to young adult patients.
“I was already interested in advocating for more people to become bone marrow donors, because it can be pretty difficult for people of diverse ethnic backgrounds to find a match,” explains Anmol. “So, the opportunity to meet other young cancer patients and work together to advocate for meaningful differences became very therapeutic for me.”
Anmol shares how valuable the personal experience of each person on the Young Adult Advisory Board is and how powerful those unique experiences become collectively, particularly when brought together to influence care delivery. The Young Adult Advisory Board helped co-design the Young Adult Cancer Program, a specialty program within the Livestrong Cancer Institutes that provides access to cutting-edge cancer treatment and comprehensive supportive services for young adults who are diagnosed with breast cancer, gastrointestinal cancer, and hematologic malignancies as well as those patients with any known or suspected gynecologic cancers. This collaboration between the Young Adult Advisory Board and UT Health Austin clinicians ensures the services offered through the Young Adult Cancer Program are tailored to this specific patient population and delivered in coordination with the patient’s entire care team to ensure the patient’s treatment plan addresses the full spectrum of the patient’s needs and preferences.
“We get to meet with various care providers within the Livestrong Cancer Institutes and provide feedback on how they can tailor their care to better meet the needs of young adults,” says Anmol. “This may include answering certain questions, perhaps about fertility options for example, before the patient even thinks to ask. We’ve worked on content in patient surveys and welcome packets as well, which are, again, communications that we’ve helped tailor to better speak to the audiences they are intended for.”
Anmol is proud to say that her cancer diagnosis did not and does not define her. She is a whole person with interests, hobbies, a career, dreams, and a life that continues to move forward despite her cancer journey. She has a background in epidemiology and public health, and she works at the Dell Medical School at The University of Texas at Austin. She also plays piano, loves to travel, and enjoys spending time with her family and friends.
Anmol, who continued to play piano throughout her cancer treatment, has also worked with medical students and art students at UT Austin to explore the intersection of art and health care. Aesthetics of Health was a collaborative project between the UT Austin Department of Art and Art History and the Livestrong Cancer Institutes that involved students creating art with cancer patients to study how connections and relationships can be made with others in a clinical setting. Projects like these are invaluable for students, patients, and clinicians alike.
“I think the mission to treat the whole person at the Livestrong Cancer Institutes is amazing and the way health care should always be addressed,” shares Anmol. “I am really thankful to be a part of an advisory board that gives me the opportunity to share my story and also use my personal experience to build relationships and make health care better for others.”
Anmol has been in remission since her stem cell transplant but remains on an oral chemotherapy that she hopes to no longer take as she reaches the 2-year anniversary of her transplant surgery near the end of 2021.
To learn more about the Young Adult Advisory Board, visit here. If you are a young adult who has been directly impacted by cancer and are interested in joining the Young Adult Advisory Board, please reach out to the Young Adult Cancer Program at CaLM@austin.utexas.edu.
To learn more about the Young Adult Cancer Program, visit here.
To learn more about the Livestrong Cancer Institutes, call 1-833-UT-CARES (1-833-882-2737) or visit here.