My Story | Stephanie G., Louisiana, USA

Adenocarcinoma of the cervix, metastatic stage 1b
Diagnosed 2000 at 30 during pregnancy
Surgery, chemotherapy, radiation

In 2000, at the age of 30, I was pregnant with my second child. At a routine pre-natal visit, my obstetrician/gynecologist (OB/GYN) noticed a cyst on my cervix. After looking at it using a speculum and a light, he diagnosed it as a Nabothian cyst, or, as he put it, "nothing to worry about." As a result of two pregnancies and moving to a new state, I had had four Pap smears - all normal - in the past year and a half, so I wasn't too concerned. Then, on the way home from my forty-week check-up, I started to bleed. I called the OB/GYN when I got home and he prescribed bed rest for the rest of the day. If I was still bleeding the next day, I was to give them a call. Well, I went into labor that night!

At the hospital, the nurse came in to check my progress and when I saw the look of concern on her face, I told her about the cyst. Since she had never felt anything like it before, she called in four other nurses to check it out! Then I stopped progressing. She called my OB/GYN to let him know the situation and he was concerned that my cervix might rupture. When three hours went by and I still wasn't progressing, I was sent in for a Caesarian section (C-section).

The OB/GYN was concerned about the "cyst" he saw while he was doing the C-section, so he sent a sample of it off for biopsy. One hour before I left the hospital with my newborn son, my OB/GYN came in and told me the biopsy results: cervical adenocarcinoma. He referred me to a specialist, a gynecologic oncologist (GYN-ONC), to discuss my options. I was told that a radical hysterectomy was the only way to go in my case. I opted to keep my ovaries, as I did not want to go on hormone therapy.

You will have to forgive me if some of the details are sketchy, but I had an eighteen-month-old daughter and a newborn son to care for, so I was pretty preoccupied. I had a CT (computed tomography) scan a week after my son was born, then three weeks later went in for my radical hysterectomy with lymphadenectomy. The GYN-ONC had to cut a nerve in my left leg, so every time I had to turn or try to get out of bed, I felt like someone was stabbing me with a dozen or more knives. The pain medication just didn't do the trick.

After surgery, I thought all I would have to do was recover for a month or so and my treatment would be complete, but at my two-week check-up, my GYN-ONC told me that the cancer had spread to my lymph nodes and I would have to have radiation and chemotherapy. Since my body needed a chance to recover from the surgery, I started daily radiation treatments and once-a-week chemotherapy (cisplatin) a couple of weeks later. Prior to the treatments, I had a mediport put in my chest to make getting chemo easier.

By the fourth week of chemo-radiation, my white count dropped to almost nothing, so they suspended treatment and put me on twice-daily shots of a very expensive and wonderful drug called Neupogen. A nurse came to my house and taught me how to give myself the shots. A week later, my white count was better and I resumed treatment. By Christmas Eve, 2000, I was finished. I called it my early Christmas present.

In the years since, I have had tenderness and pain in the pelvic and groin area, shooting pains in my right leg, and bladder problems. Two years after completing treatment, I felt a hard lump in my pelvis. I asked my GYN-ONC to check it out and was told that it was just scar tissue. The bladder problems got worse. I never knew when I was going to have the sudden urge to go, and had several accidents. Since I wasn't getting any answers from the GYN-ONC, I went to see my radiation oncologist. He sensed my concern and ordered a CT scan. It showed a large mass in my pelvis, but since it was linear in shape, they believed it was scar tissue. The scan showed also that my left kidney had not taken up any of the contrast. These results were sent to my GYN-ONC who recommended that a stent be implanted to my kidney. He said it was successful in 75% of cases. He also gave me some Detrol samples to help with my bladder.

I still wasn't sure what to do so I went to the Internet for some answers. First, I read up on Detrol and decided that this may not be the best medicine for my condition. I called the manufacturer of Detrol and they agreed with me. I then looked up kidney stents and the horror stories I read made me get a second opinion from an urologist. He said Detrol would have had the opposite effect of what I needed and gave me a new prescription to help with my bladder. While I'm still not 100%, after one month, my bladder problems are greatly alleviated. After doing a renal ultrasound, he sent me for a renal scan that indicated my left kidney was hydronephrotic and beyond repair. This meant that the stent would not have been a success.

Then, a little over two weeks ago, while trying to wrap Christmas presents, I noticed that my leg was very swollen and painful. I called the local nurse-line and they urged me to go to the emergency room to make sure that I did not have a blood clot. The ultrasound came back negative for blood clot. Since it was December 23, I had to wait till the 30th to see my internist. He ordered an MRI (magnetic resonance imaging) that showed swelling in my abdomen down through my leg. The radiologist felt this was from a muscle injury, even though no such injury showed up on the MRI. He recommended 600mg of Advil or Tylenol three times a day for ten days to help reduce the swelling.

Again, I went to the Internet to do some research and came across "lymphedema." After reading several different websites about this condition, I called my internist and asked him to look into this as a possible cause for my leg swelling. (By this time, my leg was swollen an inch and a half in some areas!) He said he was unfamiliar with the condition, but would look into it. Yesterday, I decided to give my GYN-ONC another shot - he must have seen lymphedema before. I called his nurse and told her about my leg swelling that, at this point had been present for fifteen days. I asked if it could possibly be lymphedema and asked if they would be able to diagnosis this condition. The nurse called back after talking to the GYN-ONC, saying I would need to go to physical therapy for treatment. I asked again if I needed to come in for an evaluation and diagnosis, and again she told me I would need to go to a physical therapist.

This is where I stand right now, still searching for answers and feeling the need to share my story with someone. I have learned over the past year that you have to take control of your medical care. Because I was unhappy with the answers I was getting from my GYN-ONC, I felt it would be easier to go to my internist for help. He has been very willing to get to the bottom of my aches and pains, so only time will tell how my story will end.

January 2004