How my story begins: Back in my 20s, I had an abnormal Pap and tested HPV 16 positive. My body fought it off and I moved forward with my life. It wasn't a big deal then. I didn't require a cone or LEEP procedure. I had normal Paps thereafter.
Then in my early 30s, I skipped a Pap (big no-no!!) What was the big deal? I had been with my husband for years and my health was good... I had no symptoms or signs of anything wrong. This is where my cervical cancer story begins.
In November 2015, I met with an ob-gyn for fertility issues because we had been trying to conceive for almost 2 years with no success. First things first, she gave me a Pap test. The results came back abnormal and after a colposcopy (deja vu from my early 20's!!), I was diagnosed with stage 1b1 Squamous cell carcinoma, Keratinizing cervical cancer. My ob-gyn told me I would require a hysterectomy and referred me to a gyn-onc. Total devastation. That gyn-onc performed a cone procedure and removed 7mm of cancer with positive margins. I was referred to a gyn-onc who specializes in the trachelectomy, a fertility sparing procedure. He is the only known doctor within 6-7 states who can perform this type of procedure. By chance, I was a good candidate for the trachelectomy because my tumor size was small enough and I was interested in preserving my fertility. After lab/blood work and a clear PET/CT scan, my appointment for the trachelectomy was set. Out of an abundance of caution, we began fertility treatments and had 9 embryos frozen in advance.
How I felt after diagnosis: Devastated. Scared. Lost. Angry with myself.
My treatment: In January 2016, I was admitted to the hospital for the radical trachelectomy and pelvic lymph node dissection. It was an open abdominal surgery. I awoke 6 hours later with a successful procedure. They inserted a drain in my stomach to drain the lymph node fluid to prevent lymphedema. I also had a urethra catheter and uterine catheter (to prevent stenosis) placed during surgery. After 5 long days in the hospital, I was discharged AND my lymph node pathology results came back- ALL CLEAR!! This meant I would not require chemo and radiation. I am cancer free.
How I felt after treatment: Relieved. I survived!
What was most difficult for me: The first 2-3 weeks were incredibly difficult and painful, but it was uphill from that point forward. Here is a list of my post-surgery complications:
- Temporary paralysis in my leg (Due to my low body weight, the stirrups used to clamp my legs open during surgery pinched and temporarily damaged a nerve in my groin area, completely paralyzing my left leg. It took 10 weeks for the nerve to regenerate and my motor skills to return. I had 10 in-home physical therapy sessions to help stimulate muscle memory).
- UTI (10 days after surgery I contracted a urinary tract infection when they pulled my catheter. This was cleared up by antibiotics).
- Infection at cervical site (This was diagnosed at my 4 week check up. 2 antibiotics helped clear this up).
- Numbness (The inner portion of my upper left thigh has a bit a numbness. The portion of my belly above the incision is numb. The numbness experienced is a typical side effect which is often times temporary. Time will tell!).
- Amenorrhea (As of mid April, my periods have not resumed since surgery. The doctor has examined me several times and it does not appear that I have stenosis (blocked menstruation blood in uterus). He asked if I am experiencing "hot flashes" as if it could be early menopause. At the moment, this complication is still unexplained.
- Dilated Fallopian Tube (I had an MRI on April 7th for the amenorrhea. My results came back clear, except it showed a hydrosalpinx in my left fallopian tube. This means my tube is fluid filled and blocked at the ovary end. This most likely occurred from infection/scar tissue post surgery.
What I did to help myself: I joined online forums and social media sites to connect with others around the world going through the same thing. It has brought a lot of comfort to be able to relate to others, ask questions, and learn about their experiences.
My life after cancer: It is difficult to imagine life without a child. I am struggling to accept this new, possible reality. At first I was in survivor mode - I was stronger than I've ever been before and was focused solely on survival. Now that I've survived, a great amount of sadness, regret and (I'm ashamed to admit this) even envy has transpired. I know it will get easier with time, especially when I fully accept my circumstances. Although it has been hard lately, I still choose to wake up each day with a sense of gratitude in my heart and that will see me through.
Where I am today: We hope to begin FET (frozen embryo transfer) by the end of this year, either with me or a gestational carrier. It will be interesting to see how things turn out! I remain hopeful and grateful every day.
What I want other women to know: Never give up hope. There are moments of light after moments of darkness. Engage with family and friends and online forums so you never feel alone or isolated. And the biggest lesson for me is the Trachelectomy. If you are in your childbearing years and your tumor size is less than 2 cm, you may qualify for the fertility saving procedure.
How I will try to help others: I will be an advocate for the trachelectomy procedure to raise awareness for every woman in her childbearing years who wants to keep her fertility. It is so important to know there is another option beside the hysterectomy if a woman has early stage cervical cancer.