“You have cancer.” Three words that no one ever wants to hear, certainly not during pregnancy… and certainly not when the part of your body the cancer has invaded is your cervix.
I will never forget that day. It was August 6, 2020. I was 34 and 20 weeks pregnant with my son, Karson, and those three little words turned my world upside down. As if 2020 hadn’t been tough enough already with suffering a miscarriage and dealing with a global pandemic, I was now living in a whole new nightmare. I had tested positive for HPV-16 and had an abnormal pap with HGSIL (high grade squamous intraepithelial lesions) in February after my miscarriage, but my doctor didn’t talk to me about any treatment at that time. I had put off having a pap, and with the guidelines back then, I was over a year and a half overdue. Two days after my birthday in April, I was surprised to find out that I was pregnant again, just two months after my loss.
I had a pregnancy confirmation appointment in May, but with appointments being pushed back due to COVID, I didn’t have my colposcopy exam until July 2020. My OBGYN reassured me that while she was concerned about what she was seeing during my exam, she didn’t think that it was cancer. I had never had an abnormal pap before and knew plenty of women who had abnormal ones all the time, so I really wasn’t too worried when I was referred to a gynecological oncologist to complete a biopsy at 19 weeks pregnant. When I sat down across from my GYNONC for my results and was told that I had squamous cell carcinoma of the cervix, stage IA1 (later amended to IB1) at 20 weeks pregnant, I felt completely broken. I remember thinking, why was this happening to me? And what had I done to deserve this?
Since I had already suffered a miscarriage earlier in the year, I was less concerned for myself and more terrified of what cancer could mean for my little miracle growing inside me. I knew the stage was early, but I still feared it could be worse than what the biopsy showed and had so many questions and concerns. Could I carry to term? What were my treatment options? What were the risks? Could it wait? Was I going to die and leave my children without a mom? And the biggest concern of all – what about my baby? Would I have to choose between my baby’s life and mine?
The day of my diagnosis was a whirlwind. I was so thankful my husband, Tyson, was allowed to be with me for support. Since it was in the middle of the pandemic, many appointments were restricted to patients only and no visitors. We spent the entire day at the hospital. I was scheduled for my cold knife cone surgery and we went straight from my GYN oncology appointment to do pre-op testing and bloodwork, then to see a high-risk OB. They did an anatomical ultrasound to check on Karson and measured the length of my cervix to see how surgery might affect my pregnancy and ability to carry to term. We were educated on the risk of incompetent cervix and premature delivery, and the possibility of having to have a cerclage if my cervix started opening. I remember leaving that appointment feeling very uneasy about what they might find during my surgery and afraid of the possibility of having to make an impossible choice if my staging ended up being worse than we thought.
We had our gender reveal on August 8, 2020, just two days after I was diagnosed. We really needed some joy, so we decided to have the party as planned. With everything else going on, my husband and I had decided during our anatomy scan that we didn’t want to wait to find out the gender for ourselves, so it was no surprise when my bonus son hit a baseball and it shattered and blue powder flew everywhere. We decided to tell our close friends and family about my diagnosis that day. There were countless hugs and so many tears shed when it should have been a time of celebration. I had my cold knife cone surgery two days later. Due to being pregnant, general anesthesia was too risky, so I had a spinal epidural and stayed awake for my procedure. They checked Karson’s heart tones before and after surgery to make sure he was okay. After my surgery, I felt so anxious when I was still numb and couldn’t feel if he was moving or not, I was so relieved when the epidural wore off and I could feel him again. On August 19, 2020, I saw my GYN oncologist again to receive the pathology results from my surgery. The news was not what we wanted to hear, and my diagnosis was changed to stage IB1, grade 2.
We talked through treatment recommendations from the tumor board, as well as potential risks. I remember her telling us that the surgical margins were clear, but she was concerned that the cancer may have already spread due to being unable to do the proper scans in pregnancy. She explained that I had grade 2 cell changes which grow and spread more rapidly, and that cancer can sometimes progress more quickly with pregnancy and hormonal changes. We were told about possible growth restriction for Karson in utero and the possibility of hearing loss for both of us from the Cisplatin. As terrifying as it was, I decided the potential benefits outweighed the risks and chose to follow the recommendation to do chemo treatments, knowing that I might also need to do radiation after Karson was born.
I remember so many people were shocked that chemotherapy was even an option in pregnancy (it is an option in second and third trimester when the baby is more developed). Cervical cancer diagnosis during pregnancy is rare, with only .5-3% of women being pregnant or postpartum at the time of diagnosis. I was one of less than a handful of women that my team had treated for cervical cancer while pregnant, but I put my full trust in my medical team and in God to see us through it.
I was told that I would need to have a scheduled c-section at 37 weeks to hopefully avoid going into labor on my own, which would include a higher uterine incision to avoid disrupting my cervix and potentially spreading cancer cells. I was also told not to anticipate being able to breastfeed. I had a vaginal delivery with my daughter, Kaydence, and had breastfed her for 18 months, so hearing this was disheartening. I felt very scared, angry, discouraged, and alone. I started searching for cervical cancer support groups on Facebook to try to connect with others who had faced what I was going through. I was lucky to find Amie, another woman who was diagnosed with cervical cancer while pregnant and was going through the same treatment as I was about to be. Through Amie I also found an organization, Hope for Two, that connects women who are pregnant with cancer with other women who have been pregnant with the same type. I sadly didn’t know about Cervivor at the time, but it was reassuring to connect with Amie and my Hope for Two support, Devon. It helped me to recognize that I was not alone, and they gave me the hope that I desperately needed.
I did my first chemo treatment of Cisplatin and Taxol on August 25th, 2020 at 22 weeks pregnant. I asked a lot of questions during my education appointment prior to starting chemo and they were very thorough in explaining everything, but nothing could have prepared me for it. I didn’t expect how tired I would be, or how long treatments would take with the bloodwork, oncology appointment, pre-meds, and then the actual chemo itself. I was one of the first patients there each time and the last one out and slept through most of the treatment.
Two weeks after my first chemo treatment, my hair started falling out. At first it was just a little, then it was handfuls. I had ordered several head scarves as a precaution, but it didn’t prepare me for the heartache of losing my hair. I received a wig from the cancer institute and had a dear friend shave my head for me after my second treatment when my hair was so thin that I couldn’t stand it anymore. I was shocked that I didn’t cry; it was empowering to have control over something when so many things were out of my control. I never in a million years would have imagined having to wear a wig or fake eyelashes for my maternity photos, but with the help of a makeup artist/hairstylist friend I felt so beautiful, and our photographers captured some amazing memories for our family.
I continued chemo treatments every three weeks for a total of four treatments, with my last one completed at 31 weeks pregnant. I was very blessed to have minimal side effects from chemo. Other than fatigue, I had side effects related to the steroids I was taking – trouble sleeping prior to treatments, redness in the face and chest after treatments, increased urination, and heartburn.
During this time, I was also going to routine appointments with my regular OB and to see my high-risk OB every two to three weeks to check on Karson to ensure that the chemo was not stunting his growth or affecting his development. Unfortunately, I added another diagnosis at 28 weeks pregnant – gestational diabetes. Now instead of worrying that Karson would be small from the chemo, we worried that he might be too big from the diabetes, along with some other possible risks. I tried to adjust my diet but the steroids I was given for chemo made it difficult to keep my blood sugar down. I ended up having to check my blood sugar and inject myself with insulin several times a day for the remainder of my pregnancy (NOT a fan).
Despite the many challenges we faced, we found joy and comfort in getting to see our baby boy often with all the ultrasound and biophysical profiles during the second half of my pregnancy. In fact, we had so many done that we have a photo album full of just ultrasound photos of Karson.
I was originally due on Christmas Eve, but my c-section was scheduled on December 8, 2020, at 37 weeks and 5 days. I remember so many emotions that day – happy, scared, nervous, anxious, excited – but I think the strongest one was the feeling of relief. It felt like the light at the end of the tunnel, he was my blessing in the struggle. I will never forget the emotion I felt when the doctor lifted Karson up over the drape and I saw him for the first time, my perfect little 7 lb. 2 oz. miracle. My husband and I both wept with tears of joy that our baby boy came out okay. He was the most beautiful thing I had ever seen. With everything Karson and I went through, I feel like we will always share an indescribable bond. I kept a pregnancy journal to give to him when he is old enough to understand. I can’t wait to tell him about what a tiny warrior he was, even before he was born.
While my doctor was closing me up, my husband ended up going into the other room with Karson and the nurses while they worked on his breathing and cleaned him up. I was not allowed to have a doula or extra support with me, so I laid there alone, scared, and wondering if everything was okay. Unfortunately, Karson had trouble transitioning and had fluid in his lungs, constant grunting, and increased respiration rate.
When I finally got to hold him when we were in the recovery room, I wanted to hold him and never let go. I was determined to breastfeed him for as long as I was medically able, however long that would be (we made to it to two years and are working on weaning now). Karson was ready to nurse right away and latched like a champ. The doctors were still concerned but since a NICU room was not available, Karson was allowed to stay in our room overnight with special monitoring. He was taken to the NICU first thing the next morning and spent a total of 7 days there due to issues with his breathing and heart rate.
We brought him home on December 16, 2020 and our family is complete. Karson is now a happy, healthy 2-year-old with no hearing issues or other noticeable effects from chemo.
I had my first PET scan following treatment on January 29, 2021. The waiting was hard, but they wanted to give my uterus time to go back to its normal size. I was so relieved when my results indicated no evidence of disease. On March 30, 2021, at three months postpartum, I had a radical hysterectomy at the recommendation of my medical team. Even though my husband and I had already planned to be done having children (he has a son from a previous marriage, and we have two together), I still struggled with the fact that the choice was no longer ours alone and was so final. I had hoped one day that my husband would have a vasectomy, but I didn’t imagine that I would go through such a major, life-altering surgery. They removed my uterus, cervix, upper part of my vagina, fallopian tubes, surrounding tissue, and 10 lymph nodes from my pelvic area. They also removed a cyst from one of my ovaries but left my ovaries so I wouldn’t go through early menopause (hopefully!) and moved them up in case I would ever need radiation to my pelvic area. I have a scar that runs vertically from my c-section scar up and around my belly button. The pathology from my hysterectomy came back clear and praise God I have had no further evidence of residual or metastatic disease from any of my scans! I celebrate January 29, 2021 as my cancerversary date, the date of my first clear scan.
Pregnancy is hard. Pregnancy with cancer is harder. I am so grateful to have had amazing support and care from my medical team, friends, family, and strangers that I have never even met. Without them, I wouldn’t have been able to remain positive and hopeful through my diagnosis and treatment with all the unexpected news and complications that I had along the way. I also believe that without God’s grace, Karson and I wouldn’t be here and healthy today. I didn’t grow up in church and I don’t come from a very religious family. It took being diagnosed with cancer to bring me to my knees and bring me closer to God. It is hard to have faith when you are in the middle of the struggle and easy to wonder why God allows bad things to happen to good people. God didn’t promise us that we wouldn’t go through hard times, but He did promise that he would never leave us (some of my favorite verses – Isaiah 43:2 and Joshua 1:9). I was saved during my cancer treatment and have since found a wonderful church family and my faith is stronger than ever.
I am hoping to celebrate two years NED at the end of January. I have found that just because someone is free of cancer doesn’t mean that they are cured of cancer. Some people think that once you get the “all clear” things can go back to normal and you can move on with your life, but cancer forever changes every part of your being – your heart, your soul, your mind, your body. For many cancer survivors, there are everlasting physical effects from treatment, and the worry and anxiety of recurrence is always there in the back of your mind. You become so much more aware of your body, and every time something feels “off”, every pain that you feel, every twinge that you have, you cannot help but wonder if it is back. I think with time it will get easier, but the fear is something I think I will live with for the rest of my life.
I believe my purpose is to be a light for others facing cervical cancer, especially those facing it while pregnant. I want to continue to share my testimony and use my survivorship to provide hope, encouragement, and awareness. Whether you are newly diagnosed, going through treatment, dealing with a recurrence, or have no evidence of disease, please know that you are not alone. You have support with Cervivor and there is hope! You are brave, strong, beautiful, and resilient. Don’t give up!
Brooke Wyse is a stage IB1 cervical cancer survivor and member of the Cervivor community. She lives in northeast Indiana with her husband and their three children, ages 2, 7, and 17. In addition to her efforts to spread awareness and end the stigma and shame of HPV and cervical cancer, Brooke is also passionate about mental health and addiction recovery and works as a manager of DCS services at a community mental health center. In her spare time, Brooke enjoys spending time with her family, reading, crafting, and roller skating.