Through her cervical cancer experience, Erica became a powerful Cervivor Ambassador for cervivor.org - a leading patient advocacy group offering information, support and more to women facing cervical cancer. Erica was dedicated to building education and awareness about HPV and cervical cancer prevention. She also offered support and guidance to other women facing a similar diagnosis. Her story is one of hope and inspiration, for how to live a life to the fullest, and not let cancer be defeating.
I am a cervical cancer survivor, still working towards the goal to be “cancer-free” after the past 3 difficult and challenging years. In March 2015 I had an all clear PET scan that had me feeling like I could move forward and leave the daily thoughts of cancer behind for once. But, not 3 months later, during my most recent PET scan in May 2015, a new cancerous lymph node was found. I am now facing another recurrence of my cervical cancer, which is scary, frustrating, and makes me mad!
12 years ago, when I was only 17 years old, I got my first abnormal Pap test result and tested positive for HPV. It was the beginning of my senior year in high school. I did not know the relationship between HPV and cervical cancer, and that a persistent HPV infection can lead to cervical cancer. I didn’t even know at that time that an abnormal Pap could be a sign of cervical cancer. I had not been educated that certain types of HPV, namely HPV 16 and 18, put you at a higher risk to develop cervical cancer. My doctor simply said it is something that happens and that abnormal Pap tests can be normal.. He never mentioned the risk of cervical cancer from high-risk HPV. My doctor further assured me that most people are able to clear their HPV infection on their own, and that we would just need to monitor me more closely. So with some frequency and often more than once a year, I had repeat Pap testing. Some results came back normal and some did not, right up until I was diagnosed with cervical cancer at age 27.
It was the abnormal bleeding with intercourse that led me to schedule an appointment with my Ob-Gyn, who was able to see a visible mass on my cervix. He did a biopsy to confirm if it was cancerous. Even at that time the Pap sample collected with my biopsy came back “normal”.
A gynecological oncologist subsequently identified my cancer as early stage. We decided to do a trachelectomy which is a procedure to remove the cervix and surrounding lymph nodes. This approach preserves fertility; and the panel of oncologists that reviewed my labs decided no further treatment was needed. In April 2014, I was diagnosed with a recurrence; my cancer had progressed significantly. I had lymph nodes involved as well as multiple masses. With this recurrence, I went through more cervical cancer treatment - six rounds of carbo/taxol/avastin and then six weeks of external pelvic radiation and cisplatin.
I started to chronicle everything I was going through in an online blog. I joined the Teal Ladies group on Facebook comprised of other women with gynecologic cancers who offer support and sense of community. There’s even a special trachelectomy group, although I am apparently the only person in the trachelectomy group dealing with a recurrence. In my broader search for more of a support community, I found a cancer group on the west side of Indianapolis, but no one else there shared my diagnosis of cervical cancer. I felt alone.
It was in the hospital where I received my chemotherapy and subsequently spent the majority of one summer, that I connected with a woman my age going through her first experience with cervical cancer. It became really helpful for me to be able to mentor her through her journey and it helped me to stay strong and feel like I had a purpose.
My son is now 6 years old and he also has lots of questions. He honestly knows more about cancer than anyone should, and certainly more than I did when this started. My husband also has been so supportive and helpful through all of the cervical cancer treatments, doctor visits, and tests.
We all learned a lot going through this experience, and I want to share what I know in order to help other women with a similar diagnosis as mine and to help them understand how to better prevent this disease.
Looking back, I would have preferred to know what type of HPV I had when I first had abnormal Pap results, since some types of HPV are higher risk than others. While I was very vigilant with my health management over the years, I may have approached the “wait and see” time period between my first abnormal Pap test and my diagnosis differently. I would have also asked for an HPV test with every Pap test to be as informed as possible, and to know just how at-risk I was.
I believe women need to listen to their bodies and always be strong. Don’t miss your well woman exams! If cancer taught me one thing it is that you never know what you can endure until you don’t have any other choice; be strong, persistent, and don’t give up.
To read more about Erica’s experience, please visit her blog page.
Personal Story told 2015.
Once you’ve been tested for HPV, it can be difficult to understand what your test results actually mean. We can help.
