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!
I unfortunately developed significant pelvic and groin pain in December 2022 and a PET scan in early 2023 revealed two new tumors. I had one along my pelvic side wall and at my vaginal cuff. I was recommended to undergo chemotherapy with the chemo cocktail.
I completed 7 rounds of the chemo cocktail which successfully treated one of my tumors. Unfortunately, the other tumor did not budge and was practically the same size and I had limited options at this point - I could continue chemo, look into trials, or consider a Total Pelvic Exenteration (TPE). I did not want to pursue more chemo because it didn't seem to be working and I wasn't a candidate for any trials I could find. This left me with TPE as my only possible treatment option. I visited the Cleveland Clinic and the Mayo Clinic for consultations and the Mayo Clinic accepted me despite the difficult location of my tumor. The surgery was December 8, 2023 and it was 15 hours long with 7 surgeons total.
In the end, I received a colostomy, Indiana pouch (catheterizable urinary pouch), total vaginectomy (this was difficult as a 36 year old), intra op radiation, removal of buttocks muscles, and nerve removal resulting in severe neuropathy and pain. It was a huge life change (especially since we had to move to Minnesota for 3 months) and I am still adjusting. I was officially deemed in remission on September 10, 2024 and it's amazing! I'm still dealing with my new limitations and body but am focusing on living life! I want to get back to work and travel and spend every day with friends and family because every day is a gift! I am trusting in God and will keep fighting the fight if necessary.
However, in December 2024, I developed pain once again and a PET scan in January showed recurrence in my sacrum, at the S2 nerve which was causing sciatic-like pain. I was, thankfully, a radiation candidate and underwent Proton Radiation to that location. I am still working on controlling my severe pain but due to additional spread to my right SI joint, my oncology team decided to try another 6 rounds of chemotherapy. This experience was harder than the first time with the chemo cocktail and I was hospitalized and dose reduced several times. My body decided it did not like Keytruda and I am no longer receiving that medication and finished chemotherapy in March 2026.
My severe sciatic pain continued and I made the decision to have an intrathecal pain pump placed in May 2026. This has tremendously helped my sciatic pain and I'm glad it was placed. Despite the chemo treatment, my tumor remains stuck against my S1/S2/S3 nerves and has unfortunately damaged my sciatic nerve. This has caused significant difficulty with ambulation and I am unable to feel or move my right foot/ankle. I am waiting on a special leg brace to help with walking and am very excited about it!
How I felt after treatment: I am so glad to be done and proud of myself for kicking some cancer butt! . 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 three perfect "kids on ice".
I am also dealing with the very limited mobility which has been a huge life change for me and my family. I need my cane 24/7 and am actually using a rollator for more support. I use a mobility scooter for long distances and unfortunately have fallen over 8 times in the last 6 months alone. Most days I would rather have the pain than the inability to walk, losing some of your independence is a hard pill to swallow.
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.
At this point, I believe I will continue to live with cancer and it has changed the way we live and travel. I'm a lot slower now and there are limits to my ambulation but I continue to try my best. I still focus on living my life and spending the most time I can making memories with my family. I was so lucky to have a great summer (2026) with no treatment and we were able to go on three vacations! We spent time in Gatlinburg, TN, Lake Tahoe, CA, and even went on a 5 night Disney cruise. It was one of the best summers because so many memories were made.
Where I am today: I am still trying to work part time, which is very important to me. It gives me purpose and a sense of wellbeing. However, with the continued presence of the sacral bone/nerve tumors, my care team wanted me to start treatment again.
God was opening doors and I was accepted into a Clinical Trial with Yale. I started the trial in September 2026 and continue to travel up to CT in a 2 weeks on, 1 week off schedule. It's a lot but we are praying this is the answer we need. My first scan will be Dec 1 and it will determine if the trial medicine if working or not. I want to continue to travel and spend as much time as I can with my family as well as continue to advocate for the prevention of cervical cancer!
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!