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Personal Story: Lily’s Story – Cervical Cancer Caused by HPV

Source: Minnesota Department of Health

At 27 years old, Lily learned she had cervical cancer. HPV causes almost all cervical cancers. She is sharing her story to encourage parents to protect their children from HPV-related cancers by getting them vaccinated. Watch her story on YouTube here.

Lily’s story in her own words

When I say that I was the most normal 27-year-old, I truly mean that I was the most normal 27-year-old. I had met the love of my life, recently moved in with a friend, and started working with my father helping out with the family business full time. I had this beautiful dog, Rocco, who I adored. He went with me everywhere. I loved going to all sorts of different music concerts, walking around the dog park, and just hanging out with friends.

About a year into my relationship with my boyfriend, I noticed that I was having quite a bit of pain in my pelvis. I would wake up almost every day in pain, not so much that I couldn’t get out of bed, just enough to make me realize that the pain was there. I would get up and take an aspirin and usually forget about it by the end of the day. I also started to bleed after sex. I waited almost an entire year before going to the doctor. I was that person that would go to the doctor when it was really bad. I kept putting off my regularly scheduled pap smear because as a young woman in her 20s, I didn’t think I NEEDED to go to that one appointment. I could likely skip one and be just fine. Okay, maybe skip two and still be just fine.

I finally went into the doctor just thinking they’ll do a quick check and I’ll be out in no time. I even called my boyfriend to let him know I’d likely be home in about an hour. During the exam I remember thinking, this is taking longer than usual. Then she said, “Well, I’m sorry this is taking so long, but I’m seeing something here that isn’t right.”

I thought to myself, oh, probably just a bad infection. Okay, what do we need to do for this? It wasn’t until she made a call to see a specialist and asked if I could be seen immediately that day. I kept thinking: Why hadn’t I just gone in sooner? Why hadn’t I taken care of myself properly? What have I done?

I think I was in a state of shock because I called my boyfriend and when I reiterated the story, he dropped everything and told me he would meet me at the specialist. I went in, got examined again, now just silent, thinking the worst. I remember this specialist had HORRIBLE bedside manner. He was cold and seemed upset that he had to squeeze me in as the last patient of the day. He told me he needed to take a sample and it was some of the worst pain. I think a lot had to do with the fact that I was already so scared. The nurse held my hand and I just remember crying and crying.

When it was over, he told me since it was Friday I won’t have answers until Monday and he left. I got dressed, walked out to the waiting room where my boyfriend was waiting, walked down the stairs to the main floor of the hospital and just started sobbing. I couldn’t breathe I was crying so hard. I think we sat there for about 45 minutes until I could gather myself and walk to the car.

The worst part was that my parents were on vacation in Mexico and weren’t planning to be back for a week. I had to tell them on the phone, while they were hundreds of miles away. We all just cried.

I’m sure you can guess how much of a rollercoaster that weekend was for me. I went through sobbing fits, then I just wouldn’t talk for hours, then I’d convince myself that there is no way this could happen to me. This couldn’t happen to a girl who eats fairly healthy, has never broken a bone or even had a cavity. The HPV vaccine wasn’t available when I was 11 or 12 years old (recommended age for the vaccine). I did get two doses of the vaccine around age 18 but I had already been exposed to HPV when I got the shot. That is why it is so important to get it earlier.

Monday came and I got the call. I was sitting against the wall in my dining room. I heard the, “I regret to inform you that the test came back positive. There is a tumor in your cervix and it is cancerous.” He proceeded to explain more to me, but I just put the phone down and gave it to my boyfriend. I heard nothing. I saw nothing. I just stood there in shock. I didn’t do anything at all.

My parents flew home immediately to be with me. We went to meet my gynecological oncologist together. I also got a second opinion just to be on the safe side. We got the same answer again. I had cervical cancer.

At this point, I decided that since I would likely be sick for quite some time, I should announce to the social media world that I was sick. My main mission was to encourage women to get checked, get pap smears, and get the HPV vaccine to avoid the same situation. The insanely large amount of support I received helped make me stronger as I went through everything.

I went through 5 weekly chemotherapy sessions, daily radiation, 5 internal radiation treatments (requiring surgical placement) and an additional 12 weeks of chemotherapy because, why not? I was weak. I was sad. I went into a huge depression. I was throwing up almost all the time and I wasn’t eating much. I could barely get out of bed for days on end and then would just sit and cry. I was so sick of being sick. I was sick of not laughing. Laughing pulls me out of depression, it can change my mood in a snap, and it can make other people feel good. Laughing heals all. It broke my heart that nothing was funny to me at this point. I thought the darkest things almost every day, but I was lucky to have my mother take care of me and pull me out of my depression nearly every day I was sick.

I lost some friends and I lost some hair, but I never lost myself throughout the whole ordeal. I had so much support from friends and family, and I want to give my support to any woman dealing with cervical cancer! You are not alone and you are not a bad person for getting this cancer. I want to tell other women to get regular pap smears and to get the HPV vaccine because now I cannot have a child of my own. At the time of my diagnosis, I didn’t care and I just wanted to be healthy. Now, at the age of 31, I live with this huge regret every single day. I feel like the best part of being a woman has been stolen away from me. Vaccination and screening are preventative care, and you don’t want to end up in a situation like mine.

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