How my story begins: My story began in the fall of 2021 when my brother was in need of a heart valve replacement and aneurysm repair. His cardiologist suggested his siblings get a CT scan of their heart, as the condition that caused his heart issues are hereditary and can run in families.
My family doctor really didn’t think it was necessary but I said I wanted to be safe and get it done so I had my scan in October. The CT findings showed that my heart was fine but they found a nodule in my lung that was concerning. So off to the pulmonologist I went. He suggested we wait and do another CT scan or PET scan in three months. I did not like the thought of waiting three months so I asked if we could do the PET scan sooner, which he agreed, and I had that done in November.
The pulmonologist called me after the results came in and said that it was good news, the nodule didn’t show any significant glowing and that we would rescan in three months. I asked him to release the results to my chart so I could read it and that is when I found the incidental finding of a glowing mass that appeared to be a fibroid centrally located in my uterus. Only problem was that I had my uterus removed nine years ago, although my cervix remained.
I called the pulmonologist back to tell him that I didn’t have a uterus and does that change the findings and he was a tad speechless before saying he would send a message to radiology. Radiology sent it on to my GYN and he ordered a pelvic ultrasound. The ultrasound results said that it looked like a fibroid as well but in my cervix so the message was once again “good news, we will do another ultrasound in six months to a year”.
This did not feel right to me so I called my GYN office and ask if I could come in and talk to the doctor more about it. By now it was the middle of December and the soonest they could get me in for an exam was the end of January 2022. By the time my appointment came I was resigned to the fact that I was probably overreacting and that it was no big deal. My doctor explained that while it’s not that common to get fibroids in the cervix, it did happen and we would just watch it. He did suggest that we do a pap just to be safe since I was there. I was not technically due but agreed it was a good idea and when he did the pap I bled quite a bit, which has never happened before. He said he would put a special note on the sample in light of the recent findings. The results game back high grade adenocarcinoma. I then had a cone biopsy that came back clear cell carcinoma of the cervix, stage 1B2.
Life before my diagnosis: Happily married mother of 4 boys, 2 stepchildren, and 10 grandchildren. I have had several jobs in healthcare working with the senior community and now own a placement business helping people find a new home for their elderly loved ones when they can no longer live at home. I love to travel, camp, hike and spend as much time as possible outside. My life was full with time spent with our ever expanding family as well as a great group of friends I have had for years.
How I felt after diagnosis: A little numb but not really that surprised. From the moment I read about the glowing mass in my pelvic area I just knew in my gut that it was probably cancer.
Telling my family and friends: I am pretty open about things with my family and close friends so most were kept in the loop at each step. The hard part is that most of my family and friends already looked to me to explain medical stuff to them in general so it was challenging to have to explain my own stuff to them while also processing it myself.
My treatment: I had the standard five weeks of chemo and radiation followed by five brachytherapy sessions. The brachytherapy sessions were a little complicated though without me having a uterus to hold the smit sleeve in place so they had to modify to make it work.
How I felt after treatment: If someone had told me early on in treatments that when it was over I would have to wait three months to be scanned to see if it all worked, I would have thought that would be the hardest part. But by the time I was done with treatments, I was so glad it was over that I told myself I was going to treat the next three months like a holiday and that is pretty much what I did. I travelled, camped, hung out with friends, and basically kept myself very busy with tons of fun stuff.
What was most difficult for me: The hardest part was when my numbers tanked and I became neutropenic. It was at the end of my five weeks but they couldn’t start the brachytherapy until my numbers came back up and they weren’t budging on their own. They finally gave me Neulasta and that brought things back up but that 10 days were really hard. I felt horrible and every time I had my blood drawn it was so demoralizing when they wouldn’t come back up and they had to keep canceling the brachytherapy appts.
What I did to help myself: I read, did a ton of puzzles, and just tried to keep myself occupied and comfortable.
My life after cancer: Still waiting to feel like I am done with it. My three month scans showed some residual tumor but the six month scan appears to be NED. I am still having symptoms of regular vaginal discharge that appears to be from radiation toxicity though so really hard to feel like it’s over.
Where I am today: Trying to resume my life and accept that the cancer may really be gone.
What I want other women to know: Listen to your body and continue to pursue things with your doctors when things don’t feel right. If it wasn’t for me reading all my own tests results and questioning things that didn’t feel right, we would have never known I had cancer. Even the best doctors miss things sometimes so you have to know your own body and advocate for yourself.
How I will try to help others: Tell my story and help people understand that you have to be your own advocate.