Dani

Location: Alabama

Age at diagnosis: 47

Diagnosis: Adenocarcinoma

Stage of cancer: II

How my story begins: Towards the end of 2021, I saw my gynecologist because I thought I was becoming perimenopausal. I had night sweats and difficulty sleeping. She did some labs and prescribed a low dose Estradiol patch. Around March 2022, I started bleeding with any intimate stimulation or activity. This was significant to me right away because I didn’t have a uterus. I only had a cervix and ovaries remaining. My uterus was removed six years previous due to adenomyosis.

My gynecologist did an exam and sent me for a wand ultrasound. She advised I had a “friable” cervix but the ultrasound didn’t find anything, so she thought it was some inflammation that could be resolved with antibiotics. The antibiotics didn’t change anything, and I didn’t see my doctor again until I was due for my pap in August.

The pap made me bleed heavily afterwards. She again said it looked very friable, but the results came back showing severe inflammation and negative for cancer.

In September, a biopsy was performed and she did the usual panel of tests to rule out other possibilities. I made a decision to stop using the Estradiol that month, even though my gyno didn’t think it was contributing to my issues. At the end of September, she advised all tests were negative and we were just pending biopsy results. She felt confident it wasn’t going to be cancer but said my cervix was very friable and we should discuss surgery to remove it, because it wasn’t healing.

However, in October, she called to tell me the results showed adenocarcinoma. I was referred to a cancer institute locally, and got in the next morning. The gynecological oncologist did a biopsy during that appointment and ordered tests. She said she could see and feel the tumor and it was at least 2 cm.
Just over two weeks later, my partner and I sat in my oncologist’s office to learn that they were diagnosing me at stage 1B3 upon initial reviews on my results. (The tumor was just over 4 cm). After further review later, they adjusted my stage to 2B. (Had broken through to lining.)

Life before my diagnosis: I was elbow deep in my career as a Talent Partner and living with my favorite person. We bought a house at the start of the pandemic, and were relieved to have a home that brought us joy and comfort.

How I felt after diagnosis: Stunned. After my gyno told me, I thought it was an early detection and that they could probably remove part or all of my cervix to resolve it. I didn’t realize how serious it could be. My pap was clear, I got one every single year and it was clear, so I didn’t think it could be that far advanced.
Once I saw the oncologist, it became quickly obvious this was more serious than I thought it would be and removing the cervix wasn’t going to be the first treatment option. I felt a wide range of emotions: anger, sadness, frustration.

Telling my family and friends: I have been very open from the beginning with sharing to my family and friends. It’s hard to know how much to share sometimes, when to share it, and to figure out the best words to use to share something that can be really complicated to understand. It was hardest telling those closest to me who are most impacted by it. I have grown children and telling each of them carried a different weight. I have shared about it on my social media because I know educating others can save someone else from this experience.

My treatment: In November 2022, I had robotic-assisted surgery first to remove scar tissue, my ovaries (one of them was suspicious on the PET scan), and create an apron under my bowels using my existing omental flap. This apron would lift them away from my cervix (they were sitting directly against it) to better protect it from spread and from radiation.

I had a lot of issues with healing, as I was allergic to the dermabond used to close my five incisions. It was removed a week later but the incisions didn’t heal fast or well.

I started external radiation mid-December and received a total of 25 extractions spread out over six weeks due to holidays. I also had five total Cisplatin chemotherapy treatments on Thursdays concurrent with radiation, with the exception of one week when I needed more time to heal. My last day to receive external radiation and chemo was January 19, 2023.

I had a hard time with chemo, experiencing a myriad of side effects: vertigo, diarrhea (which could also have been from radiation), ears ringing and sensitivity, loss of voice after each round of chemo, reflux and indigestion, neuropathy in my feet, fatigue, mouth sores, brain fog, etc.

I went into the hospital on January 30 to receive interstitial brachytherapy. The device was implanted in the OR that morning and then I had one treatment that day, and then two treatments a day over the next two days for a total of five treatments of internal radiation.

They removed the device the evening of February 1 and kept me overnight for observation. While in the hospital, I could not get up from a laying position for the full stay and needed two blood transfusions and a shot to generate white blood cells. It was a better experience than I expected because of how well they did with managing my pain.

How I felt after treatment: Exhausted. Sore. Stiff. Still have residual problems to date with ears and esophagus. Still have neuropathy in my feet. My bowels and bladder are not the way they were before, I need to get to a bathroom quickly when I first feel the urge. However, in recent weeks, my energy level has improved and my mental clarity is returning. I’m able to take walks. I’m working again. I’m only a couple months out from my last treatment, so I’m thankful I can do what I can.

I also struggle with guilt and anger over keeping my cervix when my uterus was removed. It was an option for me because we thought I had a healthy cervix and by keeping it, I could reduce recovery time by weeks. I now suffer the impact of that decision and it weighs heavy on me.

What was most difficult for me: A few different areas of note: I went through surgical menopause because of surgery and that was rough. I can’t have estrogen. It’s still an experience I am trying to figure out. Cold and hot flashes, etc.

Chemo Side effects were especially brutal on a couple days of each week for me. Usually day five and six, and then I had go back on day seven for another infusion, right as I started feeling better.

Also, after treatment ended, my next scan was scheduled three months out to give the radiation time to kill the tumor. However, at my one-month check-up, my oncologist saw an area of concern when she looked at my cervix. It appeared as if it was unchanged. So I was scheduled for a biopsy under anesthesia the following week, and then I had a PET scan and MRI the week after the biopsy. Thankfully the results from the biopsy and scans were better than expected, and my doc was relieved with the amount of cell death reflected in the results. My doc had already referred me to MD Anderson as a precautionary in case the cells indicated resistance to treatment.

Before seeing the MD Anderson oncologist, my doctor was discussing the option of removing my cervix the following week. She also told us that I may need a total pelvic exenteration if some of my tumor cells have resisted treatment. Facing another potential surgery, and especially a life-changing surgery, was hard to process. I’m thankful she consulted with colleagues and they collectively agreed we should give the treatment more time to work before making decisions about surgery.

Recently, the MD Anderson oncologist performed another biopsy, but will likely be recommending to give the radiation more time to have an impact. I’m only nine weeks out from my last treatment.

This experience rocked us, as we expected more time to heal and not have constant doctors appointments. We were looking forward to a little downtime, but it didn’t happen.

What I did to help myself: I bought T-shirts with inspirational messages (such as "The only way out is through” and “Recovery is not linear”) and wore them on chemo day for encouragement. I have an amazing partner who gives me space to vent my feelings and make me smile, and I have other people in my life who have also let me vent and given me support. I joined a local support group and the Cervivor network seeking others who understand my experiences.

My life after cancer: I’m focused on healing and becoming more active again. I am working again and I’m waiting for the next round of tests.

Where I am today: I’m nine weeks out from my last treatment and a few days out from my last biopsy. I’m not “cancer free” but I’m not going through treatment right now and for that, I am grateful. I appreciate the break. I’m focusing on how I feel today and how I can help myself heal. I make sure to recognize and appreciate my improvements, no matter how small. I’m also trying to navigate menopause.

What I want other women to know: Advocating for yourself is critical to survival. No matter what stage you are in, what treatment you did or didn’t have, your story and your experience matters.

How I will try to help others: By continuing to share my story and answer questions openly. I will also support others who need encouragement or information. Community and validation make all the difference.