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My Story | Liz R., Malaysia

Recurrent choriocarcinoma, August 1993
Chemotherapy, hysterectomy, lung surgeries (1993-1999)

My name is Liz, and I thank the Lord I've finally come out of my long dark tunnel of cancer treatment. In June, 1999, I was finally declared in remission after almost six years of treatment for choriocarcinoma, including numerous chemotherapies, a hysterectomy, and two lung operations.

My story begins in the Philippines in August, 1993, when I had an unusually long menstrual period. At that time, I made it a point to keep track of my periods, and when I checked my calendar, I noted it had continued for ten days. Since I was busy preparing for my final exams at school, and since I felt fine, I decided to put off looking into it. When I finished my last paper, I called my sister, a medical doctor, and told her about it. In a serious tone of voice, she told me to come and see her immediately! When I visited her at her clinic, she referred me to her gynecologist friend. I was given a pelvic exam, was told that my womb was enlarged, and that I was pregnant. The bleeding was, after all, a result of a miscarriage, and not my period!! I was told I needed to go for a d&c (dilation and curettage). Not again, I thought, because not five months earlier, I had had a d&c for a pregnancy with a blighted ovum.

After the d&c, my doctor requested to have a bHCG (beta human chorionic gonadotropin hormone) test done. The reading was 1000. She said to have the test repeated after a week, and a week later the reading had risen to 10,000. At this point, I had an endovaginal ultrasound and they found a pathology remaining deep within the myometrium. My doctor told me that it was nothing to worry about. He explained that what I had was an invasive hydatidiform mole, and that, while it was not yet malignant, could progress to cancer if I did not have chemotherapy.

I was told to have the chemo as soon as possible. I had a few days of term break coming up, so I scheduled my chemotherapy then. The timing was just right. After the first course, my markers dropped to 1000. After the second course, they dropped to zero! Because of this, my doctor said that I would need no more chemo, and that he would just monitor my markers. You can just imagine how ecstatic I was! Little did I know this mistake would cost me many more years of treatment as well as several surgeries.

From November to December, 1993, I was feeling okay, so my husband and I decided to celebrate by going away for the holidays with our daughter. When I returned in January, 1994, I had my bHCG tested and found that it had risen to 14. "What is this?" I asked. My bHCG was monitored for the next four months. The marker progressively rose. In between, I consulted another doctor, a gynecological oncologist (GYN-ONC). I learned that I should have gone for three clean-up courses of chemo after my markers dropped to less than five!

Thus started my long struggle with this disease. I opted for an hysterectomy in August, 1994, with the hope that it might cure me. I waited for my tumour markers to drop, but they did not. They even rose. At the back of my mind, I already suspected choriocarcinoma, but none of the doctors would say it. I had ten MAC chemo courses from September, 1994 to October, 1995. In November, 1995, I was seen as an out-patient in another hospital. They did a series of CT (computed tomography) scans, but still they found nothing except for an elevated bHCG. By June of 1996, the bHCG was over 100, and increasing geometrically. Inevitably, I had to go back for more chemo, and was admitted as an in-patient.

A new CT scan showed multiple lesions on my right lung. It was at this point that choriocarcinoma was mentioned as my diagnosis, and I was placed on six courses of the EMA-CO regime, followed by three clean-up courses. In January, 1997, I "graduated" and was discharged.

On Valentine's Day of the same year, during my regular bi-monthly follow-up, I learned that my bHCG was elevated again to 7. I was told maybe it was just a laboratory error, but two weeks later it had risen to life was going in slow motion.

In March, 1997, I was readmitted to the hospital. I was stoic, but I gather my face gave me away because the nurse tried to console me, telling me not to worry. The ward was on the tenth floor, so, as I was in the lift on the way up, I tried as best I could to be level-headed, but the harder I tried, the heavier the wave of emotion became. Before I could reach the tenth floor, I was sobbing like a child.

In April, 1997, I was put on a different chemo regime, a variation of the EMA, and I had approximately eight additional courses through October, 1997. After that, I was told to just observe and monitor the markers. Despite all the chemo, my bHCG started climbing again! I hope you understand me when I say I was fed up! I diligently went for my tests, but kept the results to myself as I needed space to breath.

In January 1998, my doctor found out about the slip-up. It is an understatement to say that he was unhappy both with me and the ward staff. I was again put on chemotherapy, basically the same drugs, just some variations here and there. I was not responding to the chemo well enough, so surgery was suggested. I had a battery of tests done including an MRI, CT scans, and a spinal tap. But they found nothing.

I guess my doctor was at a loss regarding my case because he got in touch with a hospital in London, known for its cutting-edge treatment of choriocarcinoma. He thought that the bHCG scan might help at pinpointing the disease, but with no focus, how? So it was back to the drawing board. I was put on a chemo regime with the objective of controlling the disease until "It" eventually showed up. "It" showed up in October of the same year on the lower lobe of the left lung and was surgically removed. I waited hopefully as they monitored the bHCG. Immediately after the operation, my markers rose, then dropped, then rose again. I needed more chemo.

A scan a couple of months later showed another focus on the middle lobe of the right lung. I was given more chemo, but the lesion remained, so I needed to have it removed surgically. My pre-surgery bHCG was about 3000. Post surgery it dropped by half. I was monitored twice weekly and it continued to drop beautifully!

A week after surgery, I was informed I needed to go back for chemo because the borders of the excised tissue showed microscopic involvement, and so, could not be considered clear. But from then on, I was virtually home free! I had my last chemo in June, 1999. Frankly, by this time I lost track of the number of chemo treatments I had. I was monitored for two more months and, to my great relief, my bHCG readings were less than two every time! After two years and five months, I was finally discharged. I think I broke all hospital records for the longest stay as an in-patient.

I try to be philosophical about my initial mistreatment. After all, I cannot go back. I now realize what I went through was for a good reason since it became a source of other wonderful experiences which brought forth a new meaning of life for me. One such life-changing occurrence happened a few days after my first lung operation.

During this time, I was in great pain and discomfort because I was off the painkillers. At breakfast, I told the ward staff of my discomfort, and asked them to give me something for the pain. It was a particularly busy Monday morning, and the medication finally arrived at 11:30 a.m. By this time, I was having my lunch, so I set the pill to one side to take after my meal.

A couple of friends came to visit and to pray with me. After we prayed, I had a strange feeling of happiness, as if something had been lifted off my shoulders. I started to laugh, but had to stop myself out of fear of initiating another bout of pain. But, strangely, I felt no pain. I tried to breathe deeply and I felt comfortable. I said, "I feel good, I think I can stand," and I put my feet down at the side of the bed and tried to stand. I found I was able to stand! I became excited and took a few paces...I could walk! My visitors looked puzzled. They did not understand that something wonderful had happened. I hadn’t taken the medication, yet I was already feeling much better than a painkiller could ever make me feel. I started to thank the Lord.

I have heard it said not to ask God, "Why?" but to accept and trust in His providence. I took my diary and recorded this experience, and I started writing my prayers and thoughts as well. And then it happened. I heard an inner voice that definitely wasn’t mine. The voice was most reassuring, confident, kind, and wise. The words were coming so fast that I had to write as a stenographer would, taking notes without consciously understanding what was said. Later, when I went back to my diary, I realized that He promised me that I would be discharged from the hospital. This was something I found difficult to believe at that time. Lord please forgive me, but I said to myself, "We will see." He also said for me to count my many blessings, that I was alive, and that despite all the chemo I had over the years, I was fine. This was true, I realized. People hardly noticed I was ill. New patients at the hospital would think that I was there as a visitor until I took off the wig. Later, I was told that patients were encouraged to see me.

One of the visitors who prayed over me that fateful day, a great uncle, has since gone to the Lord himself. But I thank the Lord, for sending him to me that day, just as He sent all my family members, relatives, friends, and friends of friends who rallied to pray for me through the years. Many times during my ordeal, I said to myself, "I'm not gonna make it," but the Lord always sustained me.

January 2001