As a professional yoga instructor, my definition of self includes a focus on health, body and wellness. But this did not fully prepare me for the shock of a cervical cancer diagnosis at the age of 35.
I had always tried to take care of myself as best I could, attended medical wellness exams, and tried to never miss my routine Pap screening for cervical cancer prevention. For years and years, I had normal Pap results, and I thought this was good enough to protect me. But normal Pap tests can be deceiving, and even at the time of my cervical cancer diagnosis, I never had an abnormal result to indicate anything was wrong. An evolving standard of care in cervical cancer prevention is to add an HPV DNA test before, or with a Pap test, to better determine if a woman is at risk for disease. This is because HPV, or Human Papillomavirus, is the known cause of cervical cancer, and helps identify women as at risk, before disease develops. Although there are more than 150 different types of HPV, approximately 14 types are considered high risk. Two types – HPV 16 and HPV 18 – are the highest risk, responsible for close to 70% of cervical cancer cases.
Close to 3 years ago, my healthcare provider, a nurse practitioner, had thankfully requested an HPV test along with my Pap. While my Pap screening result was normal, I did test positive for HPV 16. My healthcare provider immediately recommended a follow-up procedure called a "colposcopy", to visually look more closely at the surface of my cervix, and to collect some additional cells from my cervix for examination under a microscope by a trained pathologist. These results came back noted as minor cellular changes. I was asked to return again for a re-check in a year. The positive HPV result had indicated I was at risk for cervical cancer, but there were no serious indications that disease was present and if my body’s immune system cleared the virus, the abnormal cells would not necessarily progress to cervical cancer.
The following year I again tested positive for HPV, with a normal Pap result. The nurse practitioner recommended another colposcopy. This time the colposcopy results came back normal, so I could again wait a year before the next re-check. There was still no indication that disease was progressing and no treatment is possible for the HPV infection itself.
At the third annual repeat round of Pap and HPV testing, my results were again the same; a normal Pap and a positive HPV test. However, this time the colposcopy showed some suspicious looking areas, and a procedure called a "LEEP" was performed. What is LEEP, you ask? Well, I didn’t know either. But LEEP is short for "Loop Electrosurgical Excision Procedure (LEEP), which more simply means that a low-voltage electrical current was used to remove a larger section tissue from my cervix, keeping it intact for a laboratory pathologist to exam under a microscope. It sounds quite painful, but thankfully the procedure, done in the nearby hospital, was not too bad of an experience.
The subsequent laboratory report from the pathologist came back with the diagnosis as cancer, so I was referred to a gynecologic oncologist, who specializes in women’s "below the belt" cancers.
The first step after my diagnosis was to schedule a "CONE" biopsy so that the oncologist could collect and remove a larger, deeper area of tissue from my cervix to remove the affected cells. Analysis of this tissue sample came back with a diagnosis of "adenocarcinoma in situ" My cancer, classified as "stage 0", had thankfully not yet invaded other surrounding areas, and my doctor was able to treat me by surgically removing my cervix, trying to preserve my fertility as much as possible. As a mom of a 6-year old son, I face a difficult decision about whether to be in somewhat temporary remission from cancer, or to have my uterus completely removed (a full hysterectomy), in an aggressive attempt to eliminate the cancerous cells.
I used to think that testing positive for HPV was reason to feel embarrassed, and ashamed. But, having cancer, and knowing that HPV identified me earlier as at risk, makes me believe that my outcome could have been different if I had not been managed so closely by my healthcare provider. As a result, my perspective has also shifted dramatically.
In the two months between my diagnosis and now, I have started sharing my story more openly, encouraging women to take control of their health and get tested for HPV as part of their cervical cancer screening. In response, women who have kept their own stories private and hidden are admitting to me that they too tested positive for HPV. As a result of these discussions, I often hear a sense of relief from other women because they appreciate learning that HPV is quite common, and that if their HPV infection does not clear, they are at risk for cervical cancer.
We need to increase awareness and education around HPV and its relationship with cervical cancer prevention!
If your life has been touched by cervical cancer in some way, we want to hear it from you. Your personal story can help us inspire others to get tested for cervical cancer or cope with the cervical cancer diagnosis.