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My Story | Karen B., New South Wales, Australia

Adenocarcinoma of the cervix, Stage 1b, January 1989 at 27
Radical hysterectomy and bilateral pelvic
lymphadenectomy, July 1989
Removal of abnormal tissue growth (benign), 1999

My journey with cancer started just after delivering my healthy, newborn daughter, Jodie-Lee. I feel that if I hadn't had my daughter, there is a huge possibility that my cancer wouldn't have been detected in time to cure, as I had no pain, no signs, and no symptoms whatsoever. I wasn't even due for my annual Pap smear. I cringe at the thought that Pap smears are recommended every two years. That is too long! When I went for my six-week checkup after delivery, the gynaecologist wasn't going to do a Pap smear, but did so only after I insisted.

A few days after my appointment, the telephone rang and, to my surprise, it was the gynaecologist's secretary. She asked if anyone was there with me. I explained I was on my own with my newborn and toddler as my husband had just left for work. She said, "I think you better sit down," and proceeded to tell me, over the telephone, that my Pap smear was abnormal, and that I may have early-stage cancer. Wow, I was shocked! I tried to contact my husband at work, but he hadn't arrived. So I left a message, but he never received it. I couldn't believe this was happening to me, and I felt very angry towards the gynaecologist because of the way I was told. And I was only 27 years old!

She scheduled a follow-up appointment two months later. I tried to insist on an earlier appointment, but she wouldn't budge. It was two months of hell, waiting and wondering. When I returned and had the Pap smear repeated, it still showed abnormality, so the gynaecologist arranged for further tests. He applied acid to the cervix to see how far the cancer cells had spread, and, at that point, told me (while looking at the floor) that the cancer cells were extremely aggressive. He put me in hospital for a cone biopsy; the results proved that I had micro-invasive carcinoma of the cervix along with in situ carcinoma. He told me it was very rare to see two areas of cancer on the cervix of the same woman at one time.

At the time, I remember feeling like this wasn't happening to me, but to the lady down the road. I was so shocked. Soon after the cone biopsy, I haemorrhaged and was put back into the hospital. The gynaecologist packed me to stop the bleeding, but refused to give me pain relief. This time I insisted on seeking a second opinion, but the gynaecologist said he wouldn't permit it, saying it would take too long to get an appointment. Then he threatened not to accept me back as his patient once he handed my files to another doctor. I was scared because I needed immediate attention, but never once did he talk to me personally. I felt like his guinea pig. The situation was getting out of control and my husband and I were getting more and more angry with this man - after all, my life was in his hands! Luckily, the hospital put me into the care of a community nurse who attended to my emotional needs. She insisted that the gynaecologist send me to someone with more specialized training and, luckily for me, he did.

Late that night, I received a call from the gynaecologist. He referred me to a professor, the director of a large gynaeocological cancer center in a nearby city. Since my appointment was scheduled for the next day, I had to call for, and collect, my pathology slides and films en route.

This professor of gynaecology ended up saving my life! Because I knew nothing about my condition, he took the time to inform me completely. He treated me like an individual, rather than a guinea pig. Wasting no time, he performed a radical hysterectomy. I was given an epidural in my spine for pain relief, and had a supra-pubic catheter. They removed lymph nodes and extra tissues, but left my ovaries (as they were healthy and I was so young). The professor was so pleased with the way my operation and tests went, that he recommended no further treatment. I only needed follow-up visits so he could keep a very close eye on me. I continue to travel quite a distance to see this very talented and dedicated man so that I can have peace of mind about my body.

I was doing so well we all started to let our guards down. Then, in 1999, I awoke with extreme pain in the abdomen and hip. I was sent for a bone scan (the doctor admitted they were looking for bone cancer!) and they found that my right kidney was totally blocked by abnormal tissue growth. Since they suspected this tissue had been growing there for five to six years, they thought the worst...secondary cancer. Dyes and liquids were put into my body through my veins and my mouth. The tests made me so sick, but were necessary to see what they were dealing with. Since my right kidney was totally blocked, I was told I needed to be hospitalized for the insertion of a stent. Needless to say, I was very teary and emotional that month.

So I returned to the professor of gynaecology who had performed my hysterectomy. He was just as shocked as every other doctor I had seen. He operated immediately, finding that my right kidney was blocked because the ureter had been totally strangled with abnormal tissue growth. Assisted by a professor in urology, they removed what they could, and stretched some loose skin around the urethra. My ovaries were checked again, and left in place.

Pathological tests showed that the abnormal tissue growth was benign, confirming my professor's opinion. Thank God it was not a secondary cancer! I found that the second time around was worse than the first, both emotionally and physically. It took a very long time to recover from this last operation. This recent scare has emphasized to me that for the rest of my life, I will live with the knowledge that cancer has invaded my body.

Today, I still am having tests, but I have confidence that my medical team is taking good care of me. Recently, doctors have found I have cysts and a follicle on my ovaries, and a swollen node in my left breast. I wonder when this will all stop. Yet I feel I am one very lucky lady to have been in the best possible hands. I have the most wonderful, talented professor/gynaecologist/oncologist in the whole world; I have also found a lovely, new family doctor. My experiences have made me rethink my life, and I am making sure I live it to the fullest.

I have one piece of advice for anyone going through something similar. Remember that it is your body, so take care of it and get the best treatment you possibly can. If I could do it over, I wouldn't have mucked around with the gynaecologist I had in the beginning. It's sad to say, but it's times like this that you find out the true meaning of family, and who your friends really are. I owe so much to my wonderful husband, Ashton. He has been by my side the whole way, even when times were very tough. Both he and my children, Jodie-Lee and Joshua, are all I live for today. I count my blessings that I have two such lovely, healthy children.

March 2001

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