Sara

Location: Virginia

Age at diagnosis: 31

Diagnosis: Squamous cell carcinoma

Stage of cancer: III

How my story begins: Throughout my early adulthood, I never missed a pap test. I was diligent about keeping my annual appointments and doing all necessary work up. I even received the original Gardasil vaccine (not the updated Gardasil9 vaccine, which is better) when I was younger. I was diagnosed with HPV in my early 20s but as it usually does, my body got rid of it on its own and I had normal paps afterwards. However, during a routine pap in 2019, my GYN found some abnormal HSIL cells prompting a colposcopy. Unfortunately, the colposcopy revealed CIN 2/3 and I was taken in for a LEEP. The LEEP diagnosed me with invasive squamous cell carcinoma and I was referred to GYN/ONC.

Life before my diagnosis: I was married just 1.5 years prior to my diagnosis and was enjoying married life and looking forward to having kids with my husband. We were active and traveled and always had fun together whether it was attending concerts, hockey games, hiking, camping, running half marathons, visiting Disney, etc. I stayed busy as a Physician Assistant working in Urology and loved taking care of my patients in the office and hospital.

How I felt after diagnosis: I was honestly surprised as I had done "everything right". It was shocking but I believe I took it pretty well. I was nervous for my first appointment with my GYN/ONC but believe my medical background helped me cope. I don't typically question things and immediately had the mindset of "what do I need to do to get rid of it?". I set into action and was prepared to do what had to be done.

Telling my family and friends: I was nervous to tell my husband but he was incredibly supportive. As were my parents, in laws, family, coworkers, and friends. I have always been open and honest about my cancer journey as it helps me cope and can provide support in case someone else is going through the same thing. I am so incredibly blessed by the overwhelming support I had at the beginning and continue to have.

My treatment: Due to my desire to keep my fertility, I opted for a cone biopsy with my GYN/ONC after I was diagnosed. My GYN/ONC did recommend a hysterectomy but she understood my goals of becoming a mother. Thankfully, my cone biopsy came back with negative margins and no evidence of cancer. I was able to get pregnant in 2020 and had a beautiful baby girl in May 2021!

Unfortunately, after my delivery, my paps (I was getting them every 4 months) revealed recurrent HPV and abnormal cells. This prompted a biopsy which confirmed I had a recurrence in Feb 2022. My PET scan confirmed a recurrence but a pelvic MRI didn't show a tumor, which was a little confusing. At this time, I needed to have a radical hysterectomy and was scheduled to have this done on April 8, 2022.

The surgery was complicated as I had significant scar tissue from my c-section which caused a lot of tearing and bleeding so my uterus had to come out despite the results of my lymph node resection. I was restaged at 3C1. My recovery went relatively well with the help of my parents. I found out the cancer did spread to one of my lymph nodes and I would require chemo and radiation (internal and external). It was a shock but again, I was going to do what I needed to do. I started chemo and radiation in June 2022 (after successfully completing egg retrieval and embryo creation with my local fertility center to hopefully complete our family through gestational carrier). I rang that bell in August 2022 and it was amazing!

How I felt after treatment: I was so glad to be done and proud of myself for kicking some cancer butt! My first PET scan was NED and it was like I was ready to move on! I had a lot of radiation side effects as my colon did NOT like the treatment so it was a big new normal for me and my routine. Looking back, I see how strong I was to do all of this and it made me proud. The side effects are probably the hardest thing for me, as I stated with the colon and also the sexual side effects. Our bodies are no longer the same and it takes a lot to wrap your head around that. I am still working on it to this day.

What was most difficult for me: The hardest thing to wrap my head around was the fact that my original diagnosis gave me a 5% risk of recurrence which was not true in my case. Especially after I did everything right to try to prevent something like this. Also, going through surgery and chemo/radiation with an infant was so hard. I just wanted to be present with my baby girl but some days I just couldn't do it. Mom guilt was real but I knew in my head I was doing this to be with her in the long run.

Losing my fertility was the hardest thing for me. I am so thankful I was able to have a child and experience the amazing beauty of pregnancy, which I know not all women who go through this are fortunate enough to do. Honestly, I still have difficulty seeing pregnancy announcements from friends and family members but am once again thankful for my little family and the possibility to add to our family with surrogacy as we have 3 perfect "kids on ice".

What I did to help myself: I actively searched for support and am so happy I found Cervivor. YOU ARE NOT ALONE. Support groups and having other teal and white sisters walk through this with you is so incredibly important. I make sure to do what I need to do too, if my body says no, then I rest and take it easy. Cancer changes us and we need to adjust as needed.

My life after cancer: After my previous treatment, I went on vacation with my husband and started a new job which I love! I continue to adjust to my new normal and enjoy working and spending time with my family.

Where I am today: I wish I could say I continue to thrive with NED but I developed pelvic pain in Feb 2023 and unfortunately was diagnosed with a 2nd recurrence. Thankfully, my two tumors were located in the pelvis and there was no distant metastasis. After much deliberation, I was scheduled for a total pelvic exenteration in April 2023 but after surgery for a biopsy and examination, I was not deemed a candidate because the tumor was located on my pelvic wall.

This left the chemo cocktail as my only option. I am currently completing 6 rounds of chemo and it has been so very hard. I once again could not have gotten through this without the amazing support of my family members and friends. I feel sicker and more tired than ever and it's hard not to do the things I want to with my 2 year old daughter. I have very difficult days but I reach out to Cervivor, go to counseling, and remind myself that I am doing this to survive. I may need additional treatment in the future but at this time, I am just taking it day by day.

What I want other women to know: As I keep saying, you are not alone. You do not have to deal with this by yourself. There is a huge amazing community of sisters who will help you through this. Continue to get yourself checked and do not ignore any abnormal symptoms. Spread awareness and get vaccinated!

How I will try to help others: As I have been very open about my diagnosis and treatment journey, I want to make sure everyone knows how to prevent this awful cancer and make sure they know they are not alone! I am hoping to attend Cervivor School this year to learn how to advocate for women and end cervical cancer!