My Story | Lola, Utah, USA
When I was diagnosed with Gestational Trophoblastic Disease, I was 34 years old and had a one year history with abnormal bleeding and irregular periods. Prior to that, I had three normal pregnancies and was in very good health. My life was typical for a wife and mother. I worked in the field of nursing as a Registered Medical Assistant (RMA) at a major hospital.
Initially, my regular OB/GYN treated the abnormal bleeding by trying a variety of pills and injections. These included birth control pills, progesterone pills, and injections of Depot Lupron, which was supposed to stop my periods completely. Unfortunately, after three months of hot flashes and continued breakthrough bleeding, it was discontinued.
Since I didn't want to undergo hysterectomy, my doctor recommended a D&C and also a laser ablation procedure (burning of the uterine lining). The endometrial tissue inside the uterus was lasered away so it would be less likely to build back up and bleed. The usual laboratory tests were performed a day in advance.
My first clue something beyond "irregular" was going on, happened when the doctor came into the "holding room" the day of the surgery and said there would be a delay. The nurse needed to redraw some blood. I was told that my pregnancy test was positive but it was likely a mistake since it was at a very low level of elevation.
They would repeat the hCG test to compare with the prior day's results before they could proceed. When the results came back, my doctor reported, "Everything is fine, let's get this show on the road," and so I went to the operating room, feeling relieved and reassured.
The procedure went well but did not achieve the results they had hoped for, and after all they had done, I continued to have abnormal bleeding. The doctors were at a loss and suggested a hysterectomy for lack of a better suggestion or reason to explain this.
I decided to think it over, considering it was an elective surgery. My "unusual condition" continued to be followed for three more months.
During month three I was very nauseated. I called my internist who ordered a score of laboratory tests including a pregnancy test. The next day the nurse called to inform me of the results and congratulate me on my pregnancy.
Once the OB/GYN was called, he just seemed shocked and astounded. I was immediately followed with hCG blood tests for a few more days. A quantitative beta hCG level was measured to show if it was increasing appropriately for what would be considered a "normal healthy pregnancy." Results confirmed it was not.
A few days later I began to bleed profusely. An ultrasound in the office was done and I was told I had probably miscarried, "no sack found in the uterus" upon scanning. I was sent home and told to report any unusual pain, but with time I should be fine.
Within a week, my hCG blood test levels were rising, not falling. That was the first time the word Gestational Trophoblastic Disease was uttered. I also found out much later, a year later in fact, that the second pregnancy test done prior to the Laser Ablation was indeed still elevated. They chose to discount it as a likely hormonal interference since it was still at such a low level of the positive range. I learned that "everything is fine" did not MEAN everything was negative. This was a very difficult lesson to learn.
I quickly learned the hard way, that Gestational Trophoblastic Disease is a term that includes several malignant conditions that are associated with pregnancy: molar pregnancy, invasive mole, metastatic mole and gestational choriocarcinoma (korio carcinoma). These are cancers and cancer-like conditions of placental elements. So I was not pregnant--I had metastatic GTD.
GTD is dangerously fast-growing -- think of how fast a fetus grows and you have some idea of how quickly these cells can reproduce! Plus during pregnancy, a woman's immune system eases off so it doesn't reject the new life growing inside. But when those cells are a tumor and not a baby as they are in GTD, it is a deadly mix.
After a couple more weeks with my OB/GYN following the hCG levels, it was recommended I have injections of Methotrexate (MTX), a chemotherapy drug. It was given every other day in the form of two shots. A rescue drug called Leucovorin was also given on alternating days to help offset toxic effects. I did this for two weeks. Even with these measures the hCG's fell but never all the way to negative.
At that point I was referred to a gynecological oncologist.
My history as a patient with gynecologic oncology began in 1995. I was given full staging with scans and blood work, and told I would need a hysterectomy or "formal" chemotherapy, or possibly both. I proceeded with a recommended vaginal hysterectomy because inspection of the ovaries through laparoscope was normal. Following the surgery the hCG levels dropped to negative but did not stay there.
My doctor called me to his office and informed me that I had two poor prognostic factors for GTD: (a) Methotrexate resistant disease, and (b) metastatic disease.
A multi-agent chemotherapy regimen called EMA was recommended, and I began that almost immediately with five cycles bringing the titers (blood levels) back to negative, which was a very encouraging response.
For three months following treatment, I was recovering from chemotherapy and doing well until late July. Four months after I had completed treatments, the hCG started again to rise. After several consultations, the doctors recommended treatment with EMA-CE high dose chemotherapy (high dose Methotrexate with VP16, Actinomycin-D followed by VP-16 and Cisplatin). I was told this regimen, used by Dr. Bagshaw (a professor/expert in GTD in London), demonstrated a 70-80% long term remission rate in patients who had failed EMA-CO therapy in the past. I did four cycles and achieved a negative hCG titer once again.
In late autumn, my hCG titer again began to rise. April of 96' repeated tests and scanning found no evidence of disease. Repeated CT scanning and staging revealed there to be "adnexal thickening, free fluid within the pelvis, and a small pulmonary nodule." At that time an exploratory laparotomy was done with resection and a BSO (bilateral salpingo-oophorectomy, removal of the fallopian tubes and ovaries). Although the hCG did drop following the surgery, it never went to negative.
The doctors were very concerned about the complications the toxicity of the chemotherapy was having on my body. I had already suffered, post-chemo, severe hemorrhagic cystitis (bladder bleeding) and GI Mucositis (the mucous lining of the intestinal track was destroyed during treatments causing severe vomiting along with mouth and throat sores).
A prompt consultation with the GTD specialist in England began. Several gyn/oncologists in the United States, as well as my own, determined that it would be in my best interest to go to London for hCG scanning. The plan was to reveal any residual disease before considering further therapy or surgical intervention.
In July of 1996 I went to London, England for an anti-hcg antibody scan and further evaluation. I was there for two weeks. It was determined that an area of disease was located at the apex of the bladder. I flew home to the States knowing I would undergo yet another laparotomy, only 12 weeks following the last one in April, and more chemotherapy.
EMA therapy was initiated pre-surgery. They would alternate EMA, with one gram per meter square of MTX and VP-16 Cisplatin over five days time. The schedule was admission on Monday and discharge on Friday, with treatments every 10 days.
The pain I was going through during chemotherapy was unbearable and I remember lying motionless in my bed at home for hours. When I did move, I would crawl to the bathroom, sit long enough to relieve myself and then lie down on the bathroom floor to keep from passing out. When I felt I could make it back to bed, I would crawl back.
While undergoing chemotherapy I had a seizure and was moved to the ICU (Intensive Care Unit). A "code" was called. The doctor called my family to tell them to come right away--they did not expect me to make it through the weekend.
But I did make it! With time, I did recover. Still, even with the high dosages of chemotherapy, I had not achieved the negative beta hCG we had hoped for. In January of 1997, my doctor recommended that I switch to another chemo drug because I was failing my current regimen for the third time. He wanted me to begin weekly TAXOL treatments on an in-patient basis.
But by then, I had begun to lose confidence with the on-going treatments and discouraging progress. After being admitted and while waiting for the nurse to begin the chemotherapy, I had a conversation with my husband. I told him I felt I was dying and I needed to take a break from "the madness" and all the drugs. He agreed and supported my decision. I broke down and cried. I called the nurse and told her I did not want to do another treatment. I asked if I could go home.
In the weeks to follow, I began to make plans to return to London to be evaluated by the GTD specialist at Charing Cross, once more. I didnt know what he would recommend but at that time my options were very few. It wasn't clear to me whether I would die because of the toxicity of the chemotherapy or from the cancer itself. I just knew inside that I was not getting better. I kept thinking, "Something has to change."
While in London I had an MRI and an Ultrasound, I also repeated my beta hCG. It had been one month since I left the hospital and since I did my last chemotherapy treatment. When the results were in, my beta hCG had spontaneously dropped to negative. They could not find any signs of cancer on the scans. It was an unexpected break I needed, even though the doctors could not explain why this had happened. Because of this, they recommended close follow-up with periodic scanning and consistent beta hCG testing.
I cannot thank my doctor enough for coordinating my care through this ordeal. I realized that it is a very small world. Each GTD specialist consulted in my case seemed to know the other and all became a willing part of giving their input when needed. I will always be grateful for that.
Only with the passing of time did it become increasingly obvious that I was improving and would not need to be retreated. Over the past three years my hCG has risen and fallen. This cannot be explained. My scans were still negative with my beta hCG fluctuating in the average range of 50-300. My gyn/oncologist and the professor in London suggested that I have some specialized hCG testing done by the HCG Reference Service in New Mexico, USA, directed by Dr. Larry Cole.
My blood and urine samples were sent and analyzed for the possibility of false positive or phantom, hCG, as the reason for my continued elevated titers. The results ruled out conclusively any false positives or phantom hCG suggesting the possibility of residual disease, or "noninvasive hCG". I had hoped for a false positive result but this was not to be. Nevertheless, I am surviving well beyond what I once thought possible. To me, this is a wonderful gift!
I must end this story of facts and details by mentioning my children. For those of you who have children and are facing a life-threatening illness, this is the most difficult thing I faced. Old enough to know "mom had cancer," they were innocent partakers of the devastation we all endured as a family following my cancer diagnosis. I have to say I am, to this day, very proud and inspired by the courage and fortitude they each showed at such young ages to believe and trust that tomorrow brings hope and another day to just be together.
My husband was a warrior in his own respect as caregiver. I am so grateful to be here writing this story in hopes that each women who reads it will realize she is not alone.
The details are the facts, but the story is the life that persists well beyond the disease. I can only hope that during my lifetime I can pass my support and experience to help some else with a gyn/cancer or Gestational Trophoblastic Disease.