How my story begins: My story begins with a miscarriage.
My then fiancé and I had gotten pregnant unexpectedly and I lost the pregnancy at 11 weeks. Afterward, I decided it was time to get a well-woman check-up. I had been treated 10 years prior for endometriosis and had missed a few pap tests since then due to my busy life. When I went in for my checkup, the NP noticed that my cervix was 'friable' and my results came back positive for HPV16. I was devastated and felt disgusted. The NP was concerned and commented about putting my data into an app to give me a 60% chance of having cancer. The way she broached it was so superficial and unprofessional that I decided to go elsewhere for a second opinion.
While waiting for that second appointment, I wound up pregnant again. So during my pregnancy, the new doctor decided to do colposcopy only, no biopsy, and give a 'wait and see' approach. I gave birth vaginally to a healthy baby boy in February 2023. I noticed during my postpartum phase that my lochia was not stopping; I was having large amounts of watery yellow discharge. My midwives advised me to keep my follow-up appointment with the gynecologist.
When I went to the follow-up appointment, the NP who was doing the colposcopy stopped and went to get the doctor. She 'saw something' in my cervix. Both the nurse and doctor seemed to think at first that it was retained remnants from the pregnancy, so they sent me for an ultrasound and a prescription for cytotec to help expel anything that was left. When I took the cytotec that night, nothing happened! I went back in the next day for another visit, and the doctor thought that maybe it was a fibroid. She spent 10 minutes digging into my cervix with ring forceps trying to remove the 'fibroid'. She sent some off for biopsy and said that she was 'certain that it wasn't cancerous'; but they'd call me with the results or ask me to come in.
One week later, they were telling me to come into the office for my results. I was still hoping that it was just CIN3 or something less than cancer. The NP pulled me into the room and asked me if I didn't want my husband to come in with me. I knew then that it was bad news. She confirmed that I had squamous cell carcinoma and would be referred to a gynecologic oncologist ASAP.
Life before my diagnosis: Life before my diagnosis was great. I was working a job that I loved, making great income. I was expecting a surprise baby with my new husband. We had just bought a house together and were looking forward to our new baby.
How I felt after diagnosis: I was in shock, very upset, and concerned for myself. I was terrified that I was going to die and leave my newborn son without a mom. That he wouldn't even remember me. I was very angry. Very angry at my ex-husband. I was with him for 15 years prior and I believe I got HPV from him as he was unfaithful. I was angry at the universe for taking my new fairytale life and crushing it. I was depressed and just very scared.
Telling my family and friends: I immediately told my mom and my sister. They were a big support for me. My sister even flew from her state to help me watch my son while I was recovering from the hysterectomy.
My treatment: Initially, the Gyn Onc did a CT scan and believed that it was confined to the cervix only, so they suggested I have a full radical abdominal hysterectomy. They cited an 80% chance of remission from it. Unfortunately, the surgical pathology came back with 1 lymph node and LVSI spread. I was staged up from 1B2 to 3C1. This was devastating again. I was breastfeeding my son and did not want to stop to do chemo. I was sent for my planned PET scan to start chemoradiation but the PET scan came back No Evidence of Disease (NED). I decided to decline treatment and wait for 3 months for a repeat scan.
Unfortunately, 5 weeks later I found a new lump on my vaginal cuff. It was sent for biopsy and confirmed new cancer growth. I had to enter treatment. They sent me for a chemo port placement and the following week I started SOC (standard of care) treatment. I had cisplatin chemo once a week on Tuesdays, and external IMRT radiation every day for 5 weeks. Then I had 3 brachytherapy treatments the last 2 weeks. I finished treatment October 2023.
How I felt after treatment: I felt very tired, sick, skinny, and emotional. The emotional toll of treatment was very difficult for me. I lost 20 pounds. Eating was tough because everything tasted gross and I was nauseous a lot. I didn't lose my hair but it thinned out a lot. After treatment, I was very grateful that it was over, but also felt weird, like I was leaving a safety net (the oncology team) and was on my own now. I felt confident that I had a complete response to treatment - my brachy planning scan had shown NED.
What was most difficult for me: The toughest thing for me was dealing with the emotions that come with a cancer diagnosis. Also, having to stop breastfeeding my son was devastating for me. I had an angel of an oncology pharmacist who did my chemo education for me and she confirmed that I could resume breastfeeding 2 weeks after stopping chemo if I could keep my supply up during treatment. That was very difficult as I needed to pump and dump my milk 8-10 times per day, and many days I couldn't find the energy to do it.
By the end of treatment, I had nearly lost my supply and then when I reintroduced the breast to my son, he refused it. I was blessed to find a great lactation consultant who worked with us and got my son to breastfeed again! It's now 9 months later and he's still going strong.
What I did to help myself: I drank as much water as I could and rested as much as possible. I leaned on my husband and my mom for emotional support. I spent a lot of time cuddling my infant son and praying to God to live.
My life after cancer: Life after cancer has been an adjustment. Going into early menopause due to the radiation to my ovaries has been very tough. I was dealing with a lot of vaginal atrophy issues but I've found some things to help with that. My sex life is forever altered but my husband and I are working through it. My bowels are sensitive so I have to be careful with certain foods or just expect to need a bathroom more frequently.
Where I am today: It's 9 months post treatment and I still have NED. I have some aches and pains in my hips, and my bowels are a bit wonky. My tastes for certain foods have changed. I used to love salads but don't care for them as much now as they cause my stomach distress sometimes. I am on an alternative protocol that is supposed to block cancer pathways and keep it from coming back and so far, so good!
What I want other women to know: Getting a cancer diagnosis is terribly scary but you can get through it! Having a community like Cervivor to support you and ask questions is very helpful. You are NOT alone!
How I will try to help others: I share my story for others to hear. This is not an uncommon thing and HPV is not a rare illness; it's like the common cold of STDs. I hope my story will spur others to keep up with their pap smears and be proactive!