10-year cervical cancer survivor shares what she wishes she knew sooner: Kara’s story

It was that time of year again. The time of year that most women dread…the annual well-woman check-up. The oh-so-uncomfortable Pap test. Some women dread it so much they skip their exams—or even worse, don’t even schedule one. But not me…I went every year.  

One year was a little different. The nurse asked me if I wanted to be screened for human papillomavirus (HPV). I had never heard of HPV at that moment in time. She explained that HPV is a sexually-transmitted virus that most people have come in contact with at some point. The test would be similar to the Pap test and would detect if I had been exposed to any HPV strains known to cause cancer. My response to her was, “Sure—let’s get everything checked out while I’m here.” I was not worried about the outcome. I had been married for a couple of years and didn’t show any symptoms of an STI.

Little did I know…

A week or so later, I got a call from the nurse with my results. The Pap test had come back fine, but the HPV screening showed I tested positive for a strain of HPV that could possibly cause cancer. Of course I freaked out for a moment. The nurse assured me that I did not have cancer, and the only thing to do at this time was to come in more frequently for my Pap test. By coming in every six months, if anything did start to change they could catch it early, possibly before it turned into cancer. 

So I went, every six months. Once I had the HPV screening, I didn’t have to have it again. The nurse explained that the virus stays with you, but may lay dormant. Most people are exposed to the virus in their early 20s but don’t develop signs of cancer until later in life.

After that, everything remained status quo. I had my son in 2006 and my daughter in 2008. Being a busy mom of two kiddos in diapers, I let my well-woman exam slip. I finally scheduled my appointment 15 months after my daughter was born—and that visit changed everything.

My doctor saw something suspicious while performing the Pap test. A small sample was sent to the lab. I can tell you one of the worst feelings in the world is the feeling of being in limbo. The Worst.

The day finally came when the doctor called me back (that was my first clue, the doctor calling) and asked that I come in later that day. I knew something was wrong. She said I should bring my husband if possible. Sitting in the exam room, fully clothed and holding my husband’s hand, she came in and said, “The test results came back and you have cancer. I’m so sorry.”

Time stopped.  I cried—sobbed to be exact—into my husband’s arms. That moment in time still brings tears to my eyes even now, 10 years later. Not being an oncologist, she thought the initial course for treatment would be a hysterectomy. I could deal with that. Oh, if only that were the case…

Being we lived outside of Houston, the only place I wanted to seek treatment at was MD Anderson Cancer Center. After more biopsies and imaging, I was diagnosed with Stage IIIA Cervical Cancer. A hysterectomy was not going to cure me—the cancer had started on my cervix, but had traveled down into my vaginal canal. My treatment was six weeks of daily radiation alongside weekly chemotherapy, followed by two treatments of brachytherapy (internal radiation). I was still hopeful and ready to start. I wanted this cancer out of me. I had two small kiddos at home…I needed to be a mom.  

My treatment started easy at first. At the time, I worked in downtown Houston so I would do my radiation treatments during my lunch break. The radiation treatments themselves only took a few seconds. My first thought was “That was it? Did they even do anything?” The chemo treatments were weekly and took several hours.  It wasn’t too bad—I had little nausea and I didn’t lose my hair. 

By week three, the radiation was starting to burn my skin. By week four, I had to start my leave of absence from work as I was now in pain and the radiation was wreaking havoc on my bowels. During this time I also had my two brachytherapy treatments, which consisted of being confined to a bed for three days, not able to move or even turn over, while being radiated internally for 15 minutes every hour. The only thing that kept me sane during these three days were the pain medication that helped me sleep through most of it. Once I was back at home, every time I would go to the bathroom I would sit in a bath immediately afterwards to relieve the pain. I can tell you that being radiated in the genital area was extremely painful…the most pain I have ever experienced to this day.

The weeks passed and I started to heal, both physically and psychologically. There was a brief time after treatment when I experienced a great deal of anxiety when leaving the house, for bowel reasons. My bowels were very sensitive and moved suddenly and often, but that too eventually evened out. I resumed my life with my family and went back to work. I kept every follow-up appointment after that…no way was I going to ever miss another check-up. 

It was only a short year later when at one of my check-ups, my doctor saw something during the exam and took a biopsy. My heart broke. I so did not want to go through the radiation all over again, but was ready to do whatever it would take.

I called my husband and we went home and did the exact thing you’re NOT supposed to do—we searched the internet for answers. In 2010, we did not find any encouraging information about surviving recurring cervical cancer. What we did find was high mortality rates and a procedure that sounded very barbaric: a Total Pelvic Exenteration.  It consisted of not only a radical hysterectomy but also the removal of the bladder, rectum, anus, vaginal canal—basically anything that touched the female reproductive system. This procedure also left the patient with colostomy and urostomy bags to deal with for the remainder of their lives.  No way…no way in this day and age was this the treatment plan.  This was far too barbaric and just HAD to be dated information.

Still hopeful, my husband and I went to the appointment, where for the second time, we heard the words we had been dreading: “The cancer is back.”  

I felt completely numb as the doctor explained my only option. I needed surgery to remove the growing cancer and to get a large enough margin so that it would not come back—a surgery to remove my reproductive system, my bladder, anus, rectum and vaginal canal. It also included removing a long strip of my abdominal wall to fill the void being left in my pelvic region. She was telling me what I had feared most…the surgery I had read about, the surgery I feared I would not live through…a Total Pelvic Exenteration (TPE).   

Surgery was scheduled for December 9, 2010, just a few short weeks away. I went into “mom mode”—I had to get my house in order. The thought of leaving my two children motherless brought me to tears every time. I could not talk about or even say the word “surgery” without breaking down. I knew it had to be done—it was not an option or a choice. If I wanted to live, to be there for my children, I had to have the surgery. 

I was a nervous wreck. My doctor could clearly see that I needed help. She contacted Jodi, one of her patients who had the same surgery a few years prior and asked her if she would be talk with me. To this day, I am so very thankful for Jodi taking the time to talk to me. We spoke for over three hours on the phone and she even offered to meet me at MD Anderson where I was being treated. It was a moment in time that I will never forget.  When I saw her walking over to me, I knew right then and there that I could do this, everything would be ok and I was going to make it through the surgery. I was going to continue living and I was going to be there for my children. 

The surgery took 13 hours. I was in the hospital for three weeks, right through Christmas. But what a gift I had been given…LIFE. It truly is a gift. The recovery was hard for the first three months, but I slowly started to get better, a little each day. It took a year to get back to about 80 percent of what I had been before the surgery. Fatigue set in a lot faster than before and my physical level would not ever be the same after my core being altered. Not to mention learning to cope with not just one, but two ostomies. I was settling into my “new normal” way of life…my LIFE with my children, my husband, my family and friends.

They say you are a survivor the moment you are diagnosed. This year, on June 25, I will be a 10-year survivor. I am a lucky survivor. I was blessed in more ways than I can count. I am thankful to be here today for my kids (now 10 and 12), for my husband (my rock) and for my family and friends. I am thankful to be here to speak to other TPE patients and help them through their cancer journeys. Some of the women I have spoken with have passed away after their surgeries due to complications or recurrence. Some were not even eligible to have the surgery. I am one of the lucky ones. 

It’s funny the things you remember when a tragedy happens. I remember going home that day, sitting on the floor, hugging and playing with the kids. Finally turning the TV on and learning that Farah Fawcett had passed from her battle with anal cancer. Anal cancer…another type of cancer caused by HPV.

HPV is the leading cause of cervical cancer. It caused my cancer and it has forever changed my life.

HPV can also cause several others, such as vulvar, vaginal, penile, anus and oropharyngeal (back of throat) cancers. At some point, 80 percent of women and men in the U.S. are affected by HPV. 

Pap tests have been used to check for pre-cancerous cells in women since the early 1920s and continues to be one of the most important preventive care exams we have available. I urge everyone I know, friends, family and even strangers, to please take the time and get your annual well-woman exam. I also advise them to talk to their doctors about the HPV screening test if they haven’t done so already.

Thankfully, the number of new cervical cancer cases is slowly starting to decrease thanks to the HPV vaccine. The HPV vaccine targets the main virus strains known to cause several cancers, including the strains that cause almost all cervical cancers. Take a minute and take that in…a VACCINE to PREVENT cancer. If only it had been available when I was a teenager. If only it had been available to those men and women who have lost their battles due to a HPV-related cancers. If only all cancers had a vaccine. If only… 

Looking back on the past 10 years of my life—if I could change time, I would welcome a slightly uncomfortable Pap test. I would welcome a sore arm from a vaccine as a teenager. I would welcome any inconveniences that would have kept me from developing cancer and having my life changed forever.   

Fortunately, my children will not endure my same fate. They have been vaccinated against developing any HPV-related cancers.  It is a gift that I can give them now, at ages 10 and 12, that will protect them for a lifetime. A gift of life.

Please remember to always schedule your well-woman exam and do not skip your appointments, for whatever reason. There is always somewhere more comfortable to be than in your doctor’s stirrups—trust me, I know. But it is so very important, not only for your health, but possibly your life. And please talk to your doctor about the HPV screening test. 

Take control of your life… you have only one to live. And please don’t forget about your children and have them vaccinated to protect them and others against HPV-related cancers.  

Prevent cancer. You only have one life to live.