How my story begins: I started experiencing the symptoms that ultimately led to my diagnosis, in July of 2023. Extremely heavy abnormal bleeding and clotting. A hallmark sign, I later came to learn. I prayed it was something like uterine fibroids, but knew it was definitely something I couldn't ignore. I quickly made an appointment, gave details, got a physical exam, and some blood work.
I'd feared the worst and immediately felt anger and disappointment toward myself for not having been seen sooner, and more often.
The truth is, I'd never felt comfortable with gynecological exams and since I felt fine and didn't have symptoms concerning enough to send me running in, I rationalized not going and avoided them.
I'd always had very regular periods. I could usually map them out to the day. When I did have some minor fluctuations, I attributed that to age. After all, I was over 40, (43 now) and things can naturally change.
While waiting for blood work results, my doctor wanted me to have a pelvic ultrasound, to get a better picture.
The results were in. And I quickly realized that reading those without waiting for a call from your doctor, can quickly throw you in a state of panic and confusion. It showed a large (I'm talking 11CM large), "cystic" mass. As a compliment to that news, I received more news. HPV positive. What?!
How I felt after diagnosis: My heart was racing. I was confused and honestly had to research more information to understand this! I mean, I've "heard" of it but really didn't understand much about it. I felt immediate shame. When did this happen? Who? How? I'd been with my husband for 20 years. We are faithful, no concerns there. But, we weren't celebate before we met so, I had to consider that. And, of course I had to inform him. I was nervous for that. How would that affect us? His perspective of me, of us? He wasn't upset and reassured me it wasn't an issue for him, for us. Heck he'd known more about it than me! He was positive and supportive. But boy is there a stigma around it. Or, at least I created one in my mind.
As I learned more, I learned how common it is! It's unfortunate that I'd been saddled with a high risk version that led me here. And that just fueled my own personal anger. Anger at myself for not knowing more. Anger at myself for now putting my family through this. Then I began to read other stories of women with cervical cancer and HPV. Some even like me. Women who'd been married for years, or women who'd never missed a pap smear or who's exams had never showed abnormal results and were surprised and devastated by HPV and ultimately, cervical cancer. It's really shocking actually. It helped to read those stories. To know that I wasn't alone or some total failure of a person. I hope if you are reading this and feeling the same way, that this is comforting and reassuring to you as well.
Now I had the task of finding a gynecological oncologist. I didn't even know there was specific role for that! Thankfully having family in health care, I got a great referral and was able to see her fairly soon. She was thorough, drew pictures and answered any questions I had. At the end of that appointment I was in tears, overwhelmed at the gravity of this. She informed me that the next step would be a PET scan to check on the progression. I'm familiar with many of these medical tests and terms. I've got family in healthcare and who've dealt with disease. But, now it's me. Not the supporting role, the patient. Even at this point, It's still surreal as I sit and type this.
Telling my family and friends: My husband, parents and close family had been kept up to date and brought along even before the diagnosis, when my symptoms and doctors visits started. It wasn't the exact outcome we'd been praying for but, I was glad they knew what I was going through and could be there for me. It was hard to believe I was really sharing the news I was.
I have a few close female friends who I kept up to date from the start as well. In addition, I only shared the news with a select group of close friends once I had all the details to share like my PET scan results and surgery date. I chose not to share this on social media as I typically don't share personal things on there.
Next was my co-workers, which was a combination of one on one Zoom calls and emails to my team to let them know why I'd be out for eight weeks!
The whole process was very surreal. Sometimes emotional, and sometimes it felt like I was reporting the news. I was and still am incredibly grateful to have such supportive people in my life. It's been incredibly important and helpful.
My treatment: I completed the PET scan and as the trend goes, waited for results. The phone rings and I listen, breath held as she begins the update. "Good news, there's no signs of spread to other areas and the tumor is local in the cervix." Thank God! It's amazing, the things you never imagined you'd be celebrating. But that was so worth celebrating. In the midst of a difficult diagnosis, a shinging light. Hope.
And that cyst? It didn't "light up" as they say, either.
Now, the treatment plan. After the PET scan, and having conferred with the gynecologist, the oncologist also recommended a radical hysterectomy as treatment. She went on to explain that lymph node dissection may be needed, during surgery to detect any spread there, as well. The thought of surgery was terrifying. I've never even had stitches! And now this? I was told I'd be sterile and unable to have children. We do not have children, and had other roadblocks in conceiving, so children were not in our plan at that point anyway. In theory, it does help make the decision of a radical hysterectomy a bit more digestible but, something about signing that "I acknowledge this" portion of the pre-op paperwork stung a bit.
Now, it was up to me to "decide" to have this surgery. Well, I'm not in a position to do nothing but is this really the right choice? Is there another option?
To help me make a decision, I met with a radiologist about the option of radiation only. He too was thorough, drew pictures and answered all the questions and ultimately encouraged surgery as well. I felt better informed and empowered to make a choice. I chose to schedule the radical hysterectomy. I had a plan to move forward! There was so much emotion during this diagnosis and leading up to the surgery that I was strangely calm, the morning of. Okay, a little bit of xanax helped but honestly, it was much more than that. Like I eluded to earlier in this story, I'm a woman of faith. I underwent surgery on Monday October 9th, 2023. The doctor said things could not have gone better. I made it, one step further. As we agreed upon, if it appeared healthy and pathology was good, she'd leave the right ovary in. The left was removed. It was no match for that giant cyst. Additionally, the lymph node dissection was necessary. I bet you didn't know that lymph nodes can by appearance alone, warrant concern? Well, they can. Thankfully she's a thorough surgeon and made the call to do the dissection and ensure pathology was completed.
During my hospital stay, and the first visit with the oncologist physician assistant, she shared that there was no spread to the lymph nodes. Again, thank God! That was the only time during the hospital stay that I cried.
But that wasn't the last of the results. When I saw the oncologist, she shared that there is LVSI and because of that, the recommendedation is external radiation to reduce the risk of recurrence. At that point, my formal stage was also determined as 1B2. It was disappointing and I'd hoped that surgery would be the last step. I'm a chronic worrier by nature. But, I thought, I've got so much to be grateful for in all of this, and I could face that head on. It was important to me to choose to have this adjuvant treatment now.
What was most difficult for me: Worry! I am an over-thinker and worrier by nature so naturally my mind went down many dark roads.
The other part that was most difficult for me was the anger and shame I felt toward myself. Why didn't I take better care of myself and know more, and know sooner? So much regret for not (in my mind), making better decisions, and having more knowledge. Now I'm putting my family and myself through this!
I've had to give myself a lot of grace and forgiveness. Reading other Cervivor stories really helped as I could relate to many who were in this same situation, and experiencing the same shock and emotions.
What I did to help myself: My faith is my foundation and I didn't hesitate to stay close to God throughout all of this, and I still do. Talking to friends, family and coworkers was also helpful. Facing a diagnosis like this can be a very lonely and isolating experience. Allowing people to be supportive, connect, care and pray for you is important. Getting outside, walking, reading, doing creative things, listening to sermons and music, resting, spending time with loved ones, reevaluating priorities remembering to not lose hope and gratefulness amidst the fear and uncertainty has also been a very important part of this journey. And, joining Cervivor!
My life after cancer: Does life feel a bit more normal again? Yes. Is it the same? Definitely not. In some ways for the better and in other ways, it's simply because you can't go through something like this and remain completely the same. And I'm, not sure I'd want to. I wouldn't want it to feel like it was for nothing. That I didn't grow as a person, a wife, daughter and friend. Spiritually, emotionally. That I didn't look at life through a new lens or and take better care of myself.
Where I am today: Ultimately I'm still on this journey and still healing. I'm not sure if I'll ever stop worrying about the what ifs, the possible side effects, or the future test results. It's not what was intended for us, but it's in our nature.
What I want other women to know: It's clear by learning what others are going through that education and awareness of cervical cancer is infinitely important, as well as sharing your story. Too many women like myself just don't know much about or understand this disease, the risk factors and the importance of screenings.
How I will try to help others: My hope is that by sharing my story, it will perpetuate awareness of cervical cancer and help anyone else navigating this disease to feel less alone and overcome the shame and that often comes for many, facing this diagnosis.
I hope that someone reading this feels less alone, less or no shame around a connection to HPV or that my experience gives them some insight into what they could be expecting during diagnosis and treatment. Each woman's fight through this is unique but each one is important.