Monday, April 13, 2015

Survivor's Story: GTD and Me – A Story of Diligence, Persistence, and Grace

During the recent tweet chat (#CancerFilm) which took place during the viewing of the documentary the Emperor of All Maladies, Christina conversed with Katie Smith, who was diagnosed with GTD (Gestational Trophoblastic Disease). Gestational trophoblastic disease (GTD) is defined by the National Cancer Institute (NCI) as a group of rare diseases in which abnormal trophoblast cells grow inside the uterus after conception. Trophoblast cells help to connect the embryo to the uterine wall and help to form the placenta. GTD, in most cases, is benign but some cases may be malignant and spread to nearby organs. Please see the NCI site for additional information. We are pleased to have Katie share her story with our community. 

GTD and Me
A Story of Diligence, Persistence, and Grace

I was 28 years old in the winter of 2005.  I had a beautiful one year old son that my husband and I had waited on for almost four years, a new job, and was excited about possibly having more children in the future.  Little did I know my world was about to be turned upside down.

After having my son, my monthly menstrual cycles became quite painful.  But, I just attributed it to getting older.  I also began having a thick discharge, but attributed it to post nasal drip (I have horrible allergies and thought that was the culprit).  In February 2005, I went to the doctor about the painful periods and an ultrasound was performed.  The doctor saw something in my uterus, but stated it was a fibroid.  Traditionally, fibroids can cause intense periods so this made sense.  I was sent home.

The next month, I noticed that my “pregnancy nose” had returned.  You know – that ability to smell someone eating a cheeseburger in the neighboring town.  At that point, I got a little scared.  While I wanted more children, I wasn’t prepared to have one now.  When I took a home pregnancy test, it showed faintly positive.  So, off to my OB/GYN doc I went.

The blood pregnancy test indicated that I had been pregnant but had a miscarriage.  This was devastating!  According to the doctor, my HCG levels were low which indicated that there may still be remnants in the fallopian tubes.  I was given a very light dose of Methotrexate to help flush out any remaining items.  I was again sent home, but was asked to come back in a couple of days for another HCG level check.

But, when I came back a couple of days later, my HCG levels were starting to creep up.  I was asked to come back in two more days for another check.  This went on for about 1 ½ months (including a stronger dose of Methotrexate thrown in there).  For some reason, my levels would not go down.  At this point, my OB/GYN doctor became concerned.  She said, “I really don’t think this is cancer, but I want you to go see my doctor.  He is a Gynecological Oncologist who can rule out cancer and figure out what this is.”

Dr. Don Hall, the Gynecological Oncologist, immediately sent me for an ultrasound.  The Ultrasound Tech stated, “I see a fibroid in there.  That’s it.”  But, Dr. Hall had a feeling that this was more than just a fibroid.  After multiple urine and blood tests, along with a PET scan, the diagnosis was found.  While all of this was going on, I became engrossed in finding out what this could be.  I stumbled across a Gynecological Disease website and found something called “Gestational Trophoblastic Disease”.  The symptoms sounded like the ones I had been experiencing.  Could it really be cancer?

It was a Friday afternoon and I was called in for my results.  With my mother on one side of me and my husband on the other, Dr. Hall delivered the news.  I had a Placental Site Trophoblastic Tumor, which is in the GTD family of cancers.  Less than ½ of 1 percent of women have this type of tumor, and it forms where the placenta attaches to the uterus.  He had already scheduled my hysterectomy for the following Wednesday.  I would be in the hospital for 3 days and on leave for 6 weeks minimum.  I would have a long scar starting from my belly button down, and they may have to remove part of my intestine.  The PET scan had indicated the tumor had protruded through the uterus and was wrapped in the intestine.

Part of me was relieved to have a diagnosis but the other part of me was terrified.  In addition, our insurance was completely maxed out (this was in the day of annual maximum amounts and before the ACA).  We would have to pay for the entire surgery and any other treatments that I would have to go through.  Funny enough-I didn’t worry about the money part.  I just wanted to be alive to see my son grow up.

When Dr. Hall went in to do the surgery, he discovered that the tumor had not protruded but was fully contained in the uterus.  It was removed and sent off for growth rate testing.  If the growth rate was low, no further treatment would be necessary.  If the growth rate was high, I would have to take chemotherapy and radiation.  In addition, it was discovered I had really bad endometriosis and one of my ovaries was removed because it was badly damaged. 

The results of the growth rate testing showed that the tumor was growing at a slow rate.  However, I had to come back every month for HCG testing.  Each time I went it, I would get very anxious.  I had ghost symptoms constantly and stayed panicked.  But, the first year went by with no increase in HCG.  In July 2015, I will be 10 years cancer free. 

There is a very slight chance it could recur as lung cancer, with an even slighter chance of breast cancer occurrence.  But, thanks to God, the concern of my OB/GYN doctor Rebecca Walker and the diligence and persistence of Dr. Hall,  I’ve been able to experience 11 years of bliss with my son. 

What can you take from this story:  Listen to your body.  It will tell you when something is wrong.  If something is wrong, don’t blow it off.  Have it checked out – it might just save your life.

- Katie Smith (@katielizsmith)

Thank you so much Katie for sharing your story with us. 

#gyncsm co-moderator