I was 28-years-old and had just moved to Bellefontaine, OH with my boyfriend and his two kids. I needed to get a new primary care doctor since I had moved over two hours away. This new doctor said that she could do my annual Pap as well. So that’s what I did – went in for my annual appointment. The doctor said that everything looked good. My results would be coming back in a few days, but she said that she didn’t see anything concerning and would see me again for a checkup appointment in a year.
Three days later, I got a call from my doctor saying that I tested positive for high risk HPV and that AGC cells were present. She told me not to worry and that I would be referred to an OB-GYN for another Pap and colposcopy. The doctor said that before any further testing is done, typically they wait to see two abnormal Pap smears. I agreed but told them that there was no OB-GYN in my area and requested that they find me someone as close as possible. After that, I called my mom in tears because I assumed the worst. Although I’m sure she was worried too, she kept me calm. She reassured me that it was probably just a bad Pap and that HPV is very common and usually clears up on its own within two years.
About a week later, the OB-GYN, Dr. Caine, calls me and schedules my appointment. While at the appointment, she asked my if I had any questions and that’s when I broke down. How could I have HPV if I’ve been loyal to my partner for 3 years and tested negative for everything before that? What are AGC cells? What is a colposcopy? The doctor calmly explained everything. She reassured me that I was young and 95% of abnormal Paps come back clear the second time. She told me that we didn’t have to do the procedure that day, but I wanted to get it done and over with. The doctor reviewed my past medical documents and said that the notes didn’t give a location so they would be performing a total of three biopsies just to ensure that nothing would be missed.
She ended up doing an endometrial biopsy as well a biopsy of my uterus. Since I was bleeding too much for a clean colposcopy she wanted me to come back in one or two weeks later for that. HOLY HELL, did those first two biopsies hurt. I was awake for them and told the doctor I didn’t think I could do the colposcopy. I told her that if it was going to be like those first two, I would need to be asleep. The doctor reassured me that the colposcopy wasn’t nearly as bad and that she could give me an anxiety medication if I thought I needed it.
So, I came back for the colposcopy. At that appointment, the doctor said she had good news and that the other biopsies came back clean. So she would be doing a Pap first and then from there would decide if I still needed to do the colposcopy. She also took a picture of my cervix and said that she doubted I needed to worry. She just wanted to be extra precautious so she did another biopsy. The doctor said that it would take about a week and that she would call me with the results.
On November 16th, I got a call at work and unfortunately couldn’t answer it. I tried to call back once I got out of work, but the line was busy. That’s when I called my mom in a panic because if the results were good, wouldn’t they have just said so on the answering machine? My mom asked me if I could access the results online and I said yes, but I didn’t understand any of the medical lingo. My mom told me to send the results to her, since she had worked in the medical field for 20+ years. I sent them to her and after about two minutes she calls me back. I could tell in her voice that something was wrong and she told me not to stop calling the office until I talked to my doctor. My mom told me that the results weren’t horrible, but that it shouldn’t be ignored for another day.
I was eventually transferred to Dr. Caine and she was her usual upbeat self. She did diagnose me with Adenocarcinoma in situ which meant that the potentially precancerous cells were actually cancerous cells. She told me that I did have cervical cancer but the ‘in situ’ part means that its small, early, and in a localized area. She told me that we needed to do a cold knife cone biopsy of that spot to find out what the margins are.
That night I had to make the horrible phone calls to all of my family members. I remember talking to my boyfriend that night and wondering what we were going to do. He and his kids had lost their wife and mother to breast cancer just four years prior. At that point, we agreed not to tell the kids until we knew how bad it really was.
On November 22, 2022, I had the CKC biopsy and Dr. Caine told me that everything went well and that she got all the cancer that she could see. She told me that she would send my pathology to the James Cancer Center Hospital for them to review. She said that if I don’t want children, they could do a hysterectomy or they could discuss other options (when I first met Dr.Caine, we talked about getting my tubes tied because I didn’t desire having children). At this point, it was a couple of days before Thanksgiving and she encouraged me to enjoy the holiday with my family. The results wouldn’t be in until the following week anyway.
That Friday, I received a phone call from the doctor with great news. She told me that my margins were clear and that she did manage to get the entire spot. She still recommended going to the James Cancer Center to discuss the diagnosis because there was the possibility of skip lesions. She wanted to be extra cautious. On December 9th, I met with my oncologist, Dr. Cosgrove. He explained everything to me and said that since I’m so young, I could wait and get tested every 3-6 months until I have a child. Or if I didn’t want children, a hysterectomy was preferred. ATS is a cancer that doesn’t grow in a straight line and especially with HPV being involved, there was the concern for “skip lesions.” These would be spots of cancer on other areas of my cervix that were so small that a PET scan wouldn’t detect it either.
I told the doctor that I wanted to get hysterectomy done as quickly as possible and that I didn’t want to deal with cancer anymore. He told me that was fine, but he wanted me to think about it for a couple of weeks because it’s a huge decision. He was right. I cried everyday for a long time. I knew that that is what I wanted, but didn’t know if it was the right choice. I was 29, and shouldn’t have had to make a choice like that. I never wanted to have kids but now that I had cancer, I was considering it. I’m stubborn and didn’t want to let cancer take that part away from me. However, I struggle with mental health and a child doesn’t deserve my mood swings; and since I had the CKC, I was at higher risk for preterm labor, miscarriages, and other issues.
I prayed about it. I talked to a medium about it. I coincidentally ran into a girl at the dentist office that had the same diagnosis. She was trying to have a baby and she shared her story with me. That’s when it became clear that a hysterectomy was the best option for me. March 29, 2023 I had my hysterectomy. April 14th is when I am supposed to get my results back and I am praying that I am cancer free!
I share my story to spread awareness about asking for extra testing and getting annual wellness checks. If I would’ve went to my old doctors office back home, it would’ve only been a visual exam and not a Pap. This could have not been found and early detection is so important! Thanks for reading my story 🙂
Kristen
OH
Submitted 04/07/2023
This story is intended to convey a personal experience and, because every person’s experience is unique, should not be relied upon as a substitute for professional healthcare advice.
