Why I do AYA Cancer Survivorship Research

Reading Time: 3 minutes

My journey into research focused on AYA cancer survivorship started back in 2008 when I began working on my dissertation research. I was interested in research with young breast cancer survivors – one of my aunts passed at a young age after having a delayed diagnosis.  I reached out to local young survivor groups to informally talk with some women and learn about their experiences and priorities. I also had an interest in reproductive health, and the thing that really stuck out to me was women’s concern about fertility and parenthood after cancer treatment, and their feeling that they were not being informed or supported regarding their options. I pursued this area of research for my dissertation, funded by the California Breast Cancer Research Program, and learned so much by interviewing women who had been diagnosed with breast cancer during their reproductive years. My focus was on a range of reproductive health topics, including fertility, breastfeeding, and contraception after breast cancer, and I explored how fertility concerns were related to depression. I was especially motivated and inspired by participants who thanked me for listening to their stories, and for focusing on these topics. I was thankful to them for sharing their stories with me!

Afterward, I maintained and continued growing my community connections with local young survivor groups. In 2011, I received a postdoctoral fellowship from the American Cancer Society to continue my work, and expand this area of research to a broader group of AYA female cancer survivors. The primary goal was to understand the range of reproductive concerns that AYAs experience and to develop a set of survey items to measure those concerns. This is also when I first connected with Stupid Cancer and Matthew Zachary. I will forever be grateful to him and this organization for supporting my research and helping to spread the word about the opportunity to participate in my study. This outreach was so effective that we were only able to keep the online survey open for a short time and ended up recruiting more individuals than planned – a very rare experience in research! This work led to development of a way to measure reproductive concerns after cancer. The measure has been translated to multiple languages and is being used across the globe. To me, this says that both the AYA survivor community and research/clinical community felt this was an important topic. 

My research career has continued to focus on improving quality of life in AYA cancer survivorship, including understanding and supporting partners and caregivers, survivors’ family building options beyond biological parenthood, sexual health concerns, and the experiences and needs of transgender and gender diverse cancer survivors. When asked how I come up with my next research idea, I answer that my starting place is always with the community themselves. To me, it is so important to talk with the community to find out what they care about and need. This is part of the reason I really love qualitative research, like interviews and focus groups. I have come up against some barriers along the way in obtaining funding for my research that focuses on post-treatment survivorship, but, to me, it was clear from the start of my research with the AYA community that reproductive, sexual, and other quality of life concerns do not end just because cancer treatment is over. If these topics continue to be relevant to the AYA community, I will continue to push my research in this direction. 

In my most recent research, also funded by the American Cancer Society, my team has developed an intervention for young breast and gynecologic cancer survivors and their partners. The intervention, called Opening the Conversation, focuses on building skills for coping and communication to support relationship health and reduce distress after cancer. Cancer survivors and partners had a central voice in the development of the intervention content and materials. One of our primary goals was to develop an intervention inclusive of all couples, regardless of sexual orientation or gender identity. Enrollment is continuing through 2023, and I hope the Stupid Cancer community will help spread the word! Find out more here.

If you are interested in checking out my research, you can go here. Another important goal of mine is sharing what I learn with the community. Thank you, Stupid Cancer, for supporting my research and for the opportunity to share a bit of my story here!

By: Jessica Gorman