How my story begins: I was a happily married 34 year old mother of 2 and had just given birth to my 3rd child. When I went in for my routine 6 week follow-up appointment, the nurse called to tell me that they found abnormal results on my Pap test. It was the first abnormal result I had ever received. When I came in to talk to the doctor for my colposcopy, she made reference to “….this is so common when someone has HPV.” And I was shocked! I had no idea that I had HPV. The only thing I knew about HPV was that it could cause genital warts and that I wasn’t the “type” of person who would ever have an STD…I was highly educated, ate well, exercised regularly, and had practiced safe sex.
After an unsuccessful series of LEEP and cone biopsies, my CIN3 wouldn’t go away and I had a total hysterectomy. I was told that while I would probably never need to worry about it again, I needed to be followed closely for 3 yrs. Life went on as normal…busy and happy family, a move, a new job, new doctor, etc.
My new doc had just cleared me after 3 years of “clean” Pap tests when I presented with abnormal bleeding after intercourse just 9 months later. It’s a symptom that is easily ignored or explained away by many women, but is a common symptom of invasive cervical and vaginal cancer. Nine short months after my last clean Pap test, I came back to my doctor and was diagnosed with stage 2b vaginal cancer.
How I felt after diagnosis: My diagnosis was shocking and devastating. In many ways I felt like I had been failed. Why didn’t I know about HPV or how common it was? Why is there not a better way to treat something that is SO common?
Telling my family and friends: I kept my diagnosis pretty private. We decided not to tell our children, who were very young at the time, not wanting to scare them. Our closest friends and family knew, but since we were still fairly new to the area and our families lived in different states, we were left with very little local support. I now regret not sharing more widely.
I won’t lie, it’s tough telling people that you have cancer in your vagina. I, like most people, don’t usually talk about my private parts with other people and there is not much more that turns someone off during a conversation than listening to someone talk about something wrong with a vagina. I have learned, however, to keep a strong sense of humor. Not only does it keep me sane, but it also tends to break the ice when talking to others about my experience.
My treatment: I began 2 months of weekly chemo and daily radiation treatments shortly after my diagnosis. I also went through a horrendous 5-day internal brachytherapy that required hospitalization. But, thankfully, my tumor responded very well and left no residual disease. Further surgery wasn’t necessary.
How I felt after treatment: My treatment left me extremely weak, menopausal, exhausted and 20lbs lighter. The radiation ravaged my pelvic area creating other GI issues and making intimacy impossible for awhile.
What was most difficult for me: Going from a healthy, active person who ran 5k races regularly to not being able to go up & down the stairs in my house was excruciating. I couldn’t do simple things like make dinner for my family or take my dog for a walk. I will never forget that feeling of helplessness and weakness.
While I felt horrible and helpless, I looked “normal” to everyone else. With a full head of hair, I never looked like the typical cancer patient. And several people, even a few that were very close friends and family, could not handle my diagnosis, which left me feeling abandoned. Cancer makes many folks uncomfortable. Having a type of cancer like vaginal, I think, makes people even more uncomfortable because no one wants to hear or talk about it. Not being able to share with others what we were going through when I was screaming on the inside was really, really hard.
What I did to help myself: I am a psychologist and a professor so I’m comfortable reading medical journals and research. I read what I could find on my disease and had a lot of conversations with my doctors. Knowing as much as I could was a form of empowerment for me that I valued, especially when I felt so weak otherwise. I also tried to go outside as often as possible and exercise when I could.
I had a small but very supportive network that helped me immensely. My husband went to doctor appointments and treatments with me, while also taking care of the kids and house. My mother lived with us for several weeks and my mother-in-law bought us meals. Messages and cards from friends far away was such a boost to my morale along the way.
My life after cancer: Life is good! I’ve been cancer free for 1.5yrs and feel strong and used to my new “normal.” I go every three months for Pap tests and pelvic exams.
Where I am today: While cancer caused immense pain and sadness, it has also brought me tremendous joy and a renewed sense of adventure. I spend more time on things that make me happy (including a new kayaking hobby) and less time on things that don’t. I don’t sweat the small stuff and live gratefully every day.
What I want other women to know: I really want other women to know that they MUST get regular screenings (Pap tests, HPV tests, & pelvic exams), even if they’ve already had hysterectomies. There is no shame in having HPV or a gynecological cancer! Almost every sexually active person on the planet has or will have an HPV infection at some point in their lives. Do not let shame prevent you from reaching out or seeking treatment.
How I will try to help others: I would love to help others learn about HPV and how to prevent this from happening to other women and girls. I know too well the sense of abandonment and isolation that can come with a cancer diagnosis and I want to reach out to others so they know they are not alone.