How my story begins: I had been married for about 2 years & was trying to start a family. Almost the entire time we were married, I was experiencing blood spotting during intercourse. I knew this wasn’t normal & questioned my OB/GYN. My pap smears were coming back normal, so the doctor concluded that I had a “weak cervix” and explained this was not unusual. The bleeding continued to progressively get worse so my doctor tried cauterization. But I saw no improvement. After over a year, my pap results showed mild dysplasia, but the doctor was not concerned as my follow-up tests came back clear. After a few instances of similar results & retests, I was given a colposcopy and a LEEP.
When I heard my diagnosis: I cried more than I ever thought possible. I was very lucky that my husband was with me when I got the news. I went immediately to visit my mother-in-law because she was a cancer survivor & I needed to be near someone who would understand what I was feeling.
My treatment: Radical Trachelectomy
Investigating treatment options: After my OB/GYN diagnosed me, she referred me to a specialist. He came with glowing recommendations about being the best in his specialty. I was so terrified when I first met with him because I had no idea what to expect. The whole process was very sterile. He calmly explained to me that I needed a radical hysterectomy and that he could fit me in for the surgery 2 weeks later. I cried and asked him if there was any other treatment because I was practically a newlywed & desperately wanted to have children. He advised that the only other treatment was radiation, and if I went that route, I would be left not only infertile, but would also require hormone therapy for the rest of my life. By having the hysterectomy, I could at least avoid the hormones. He then convinced me to sign the surgery consent forms, including a separate form acknowledging that I understood that a hysterectomy would leave me unable to carry my own children. Sobbing hysterically and believing there was no other option, I agreed.
After collecting myself out of my misery a few days later, my husband convinced me to start investigating alternative options and I made it my personal mission to find every piece of information that I could. I found a rare surgery called a trachelectomy, which is basically removal of the cervix but leaves the uterus intact – making pregnancy an option. I scheduled a meeting with the specialist & told him what I found. He acknowledged that this was an option for me and agreed to the procedure. When I asked why he didn’t offer me this option when I begged him for an alternative, he told me that the risk of cancer recurrence was higher with a trachelectomy than a hysterectomy. I certainly didn’t want to unnecessarily risk my life so I asked for the odds. I was furious to not be offered this alternative when I found out that the difference in risk was not significant in my particular case.
Why I tell my story: The reason I share my story is because I want to encourage all women who have been diagnosed with cervical cancer to take an active role in their treatment plan. Don’t allow anyone, including your doctor, to push you into a treatment plan that doesn’t make sense for you. I encourage all women to seek professional advice, do your own research, ask as many questions as you need to, and ultimately make the decision that works best for you.
What was most difficult for me: Having to rely on other people to take care of me. I am by nature a very independent person. Needing help to do literally everything during my recovery was a rude wake-up call.
Recovery and Long-term Effects: Recovery from the surgery was difficult. I had a catheter for many weeks. I was on some pretty powerful painkillers, which made me sleep 20+ hours a day. When I was awake, I was practically a zombie. I couldn’t stand, walk, climb stairs, shower, change my clothes or get to the bathroom to empty my catheter bag without assistance. My wonderful husband and sister stayed by my side 24/7 to help me with all of these things.
Long term, I have suffered from nerve damage in my leg (cut during surgery), which has killed my balance and left me with significant numbness. For about 2 years, I fell often. It has since improved, but I’ve learned to live with my “new normal” as I don’t think it will ever be the same as it was pre-surgery. Unfortunately, I still don’t have children, but in taking control of my own destiny with my treatment plan, I still feel good about my decision & wouldn’t change it if I could.
How I found hope & support: I couldn’t have asked for a better husband through this ordeal. He couldn’t have taken his vow of “in sickness & in health” more seriously. He fed me, bathed me, & helped support me both physically & mentally. My oldest sister flew in from across the country to care for me for several weeks so my husband could go to work and leave me in capable hands. When I thought I had been dealt the worst cards possible, my family stepped up and rose to meet the need. As much as I loved them for all they did, I still felt so alone in my grief. The guilt that I held for feeling so alone in the midst of all my support was crushing. Once I got myself to the point where I could stay awake long enough to get online & do some research, I resolved to find other people who could relate to my situation. After much effort, I found support from groups like Stupid Cancer, Tamika and Friends, First Descents, Imerman Angels, Camp Good Days and so many others.
My life today: I am happily married, successful in my career, and thankfully cancer-free!
What I want other women to know: Trust that you will find strength that you never knew you had, simply because you never needed it before.