How my story begins: When I was 28, I received the first of far too many phone calls that started with “Are you someplace you can talk?” My Pap test had come back abnormal and I tested positive for HPV. I then had my first colposcopy and had normal visits for the next 4 years. On the fifth year, in 2005, I again had abnormal results. Three weeks later, my doctor called to inform me that I had cancer. I remember writing down words like in situ, adenocarcinoma, and clear margins. The cancer cells that they found in my cervix hadn’t multiplied to a point where they could be considered invasive disease.
My diagnosis: Adenocarcinoma in situ
How I spent my days after diagnosis: The day after diagnosis, I started my research. I spent hours in bookstores, online, and in libraries. There was almost nothing published about this in 2005 and I started losing hope that I’d ever be able to have a child. I also felt completely alone. After about a month, I decided to see a therapist who helped me develop a game plan to work through the fear and anger associated with the possibility of losing my fertility and having to deal with a cancer that has such a stigma associated with it.
My 1st treatment: Cervical conization
What was most difficult for me: During our conversation, my doctor was saying things like hysterectomy and adoption. I was told that having a hysterectomy right away could hopefully prevent invasive disease in the future. I was 32, never married, and hadn’t had any children (but have always wanted to). It has also been difficult losing friends because they were afraid to really lose me and didn’t know how to talk to me anymore and knowing that my best friend kept her excitement over getting pregnant to herself because she didn’t want to make me sad. It’s extremely hard knowing my parents cry about this when I’m not there because they’re afraid that showing me how they are impacted by what I’m going through will make things harder for me. And it’s also tough trying to figure out how and when to tell a man I’m dating that my fertility could be lost at any time. In fact, many relationships never even have a chance because cancer reminds people of their own mortality and no one wants to think about that when in the prime of their lives.
Who I talked to: The night of my diagnosis, I made phone calls to my parents, my brother, my two closest girlfriends, and a family friend who is an OB Gyn. I didn’t want to tell anyone else what was going on – partly because I was embarrassed that I had a cancer that’s caused by an STD but mostly because I didn’t have any answers yet and didn’t want to worry anyone. In fact, most of my extended family members still don’t know.
Finding hope: In 2008, I found the National Cervical Cancer Coalition and decided to go to their annual conference. One of the first people I met there was Tamika and I instantly knew that I wasn’t alone anymore. I now have a long list of amazing women that I can turn to when I’m scared or sad, and with whom I can share the happy times.
My second round of issues: From 2005 to 2009, I had no abnormal test results. And then, in December of 2009, I had an abnormal biopsy. The pathology report stated “cannot definitively provide a benign diagnosis.” Oh boy, did the red flags go up! My doctor started talking about hysterectomies, adoption, and how she wanted me to be as aggressive as I was willing to be at that point with my treatment. I started feeling those same emotions from almost five years ago and knew that I needed to take control of my situation. I made an appointment with the fertility clinic and was told that I could have children but that I needed to do it right away. I know that all of my doctors want me to live a long, healthy life but they don’t seem to understand that keeping my fertility isn’t about having a baby to check something off of my to-do list. It’s about the possibility of someday having biological children and a family of my own.
My life today: Since 2009, I’ve moved, switched doctors, and continued with frequent biopsies, Paps, and HPV tests. In April 2015, I tested positive for HPV and had an abnormal Pap, followed by a colposcopy that showed CIN I. At the time of my initial diagnosis they said I could keep my plumbing, as long as the cancer didn’t return, for 10 years. They want to remove the chance of recurrence. In talking to my doc, it’s likely that they don’t have enough data on women who pass the 10-year mark to justify my keeping the organs. I had my 10-year anniversary in March 2015, and that was the cutoff for keeping my uterus. So, this year I’ve been talking to my doctor about having a hysterectomy and will soon be talking to the surgeon.
What I’ve learned since my diagnosis: I’ve learned a lot about myself. I know that I hate the look of pity that people give you when they know you have cancer. It makes me sad for people not to know what to say to me because they don’t want to ask how I’m doing in case the answer is something they don’t want to hear. And I know that it’s more important to me than ever to tell family and friends that I love them. I’ve also met some amazing people, I’ve learned to appreciate the beauty all around me, and I’ve learned to be truly grateful for every morning that I wake up. I was lucky that my doctors found the disease before it became invasive. I’m thankful that I have doctors I can talk to, family and friends who love and support me, and a very understanding boss who never questions why I go to the doctor so often. Even though I’m one of the lucky ones, I hope and pray that no more women have to go through what I’ve been through.