Vicki DiGuilio is a CERTAIN Patient Advisor working with Dr. Sara Javid on a project to identify the important issues facing women who undergo mastectomy to treat breast cancer that are not currently captured by existing patient-reported outcomes tools. We asked Vicki to tell us why it was important to her to spend her limited time partnering with CERTAIN on research projects relating to breast cancer. Here are her thoughts, in her own words:
I have worked as a supervisor in survey research on various health projects since 1992. What has always fascinated me is the fact that, at the beginning of each study, both supervisors and researchers always speculate at what respondents will think are the most important topics, and we are ALWAYS dead wrong! The undeniable fact is that people who are actually living with the issue we are studying are by far the best people to direct the researchers in their quest to make life better.
I have been battling breast cancer on and off for 19 years, and in the past, that has only meant a lump removal and the distant nagging worry in the back of my mind as to when or if cancer will crop up again. Then In 2012, I faced a left breast mastectomy and in the aftermath of such drastic surgery I found I had no idea how to get on with my life. I had tubes hanging out of me and no breast! I quit bathing. I hid in my house wearing my husband’s 3X sweatshirts and hunching forward to hide my deformity from both of us. If anyone came over, I retreated to the bedroom until they were gone. I couldn’t even stand to look at myself, let alone be seen by my friends and family. I could barely move my left arm, I couldn’t drive and none of my clothes fit. Every time I looked in the mirror, what I saw scared me. I was no longer the happy big-breasted woman who laughed all the time; instead all I saw was the pale sad face of a stranger.
I made several calls to my surgeon’s office and discovered that they were no better equipped than I was to deal with either my practical issues (e.g., where can I get a prosthetic) or my emotional ones (i.e., I am so ashamed of my body). Shortly thereafter, I received a survey in the mail asking about my surgery. I started filling it out and got mad. Really mad. As a survey researcher, I realized that the questions were so restricting. My answers to such standard questions would never tell the real story of what I was going through nor what was important that they address. I proceeded to type up a letter full of my complaints to CERTAIN Patient Voices, who sent me the survey, and mailed it off with the completed survey. For the first time in 2 weeks, I took a shower and washed my hair. From there, I did a lot of online research to help me navigate issues with my drain still left from the mastectomy and to find store that could help me with a prosthetic breast and other specialized issues.
When CERTAIN Patient Voices received my letter, Danielle Lavallee called me to ask if I would like to be involved in projects that CERTAIN is working on relating to breast cancer. I answered with a resounding YES! In my opinion, women who have been through a mastectomy need to give this research all the support and information possible. My hope is that if we come together and share our experiences with researchers, they will turn that information into valuable tools that translate into high quality post-surgery care for women struggling with this horrible disease in the future. My personal goal is that in sharing my experiences, if I can help just one other woman get through this terrible, life-changing experience, my time will be well spent.
CERTAIN Patient Advisory Network Blog 