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My Story | Alison S., New Zealand

Adenosquamous carcinoma of cervix, stage 1b1 with one positive lymph node, June 2000 at 36
Radical hysterectomy, external and internal radiotherapy, chemotherapy (cisplatin)

I am a 36-year-old General Practitioner (GP) from the United Kingdom (UK), but have been living in New Zealand for the last ten years. My husband is a Kiwi, and I have two daughters, ages four and two. My story really started in February, 2000, when I accidentally became pregnant. We had decided that we didn't want any more children, but got used to the idea. I then miscarried at ten weeks. I had to go into the hospital for a D&C (dilation and curettage). Nothing untoward was noticed at that time.

In May, I went to have an IUD (intra-uterine device) fitted as I had lost faith in the pill. The doctor there, to whom I am eternally grateful, thought my cervix looked a bit strange. She took a smear test, although I wasn't due for one. I had had a normal Thin Prep smear a year before. The IUD went in very easily. She rang me a week later to say that the lab had phoned her, which was unusual. They would normally just post the results. They felt that there were severe reactive changes of inflammation and, to be on the cautious side, recommended colposcopy and biopsy. I was not too concerned at this point, and booked in to see a local gynaecologist for a week later. I was feeling more embarrassed to go and see him as he was a colleague of mine.

When I arrived, he showed me the report which looked a lot worse. It read: "Adenocarcinoma in situ, ? micro invasion.". He took biopsies and said I would definitely need a cold-knife cone biopsy. He rang me the next morning, just as I was coming to the end of my morning surgery. He had managed to rush through the results. I had three more patients of my own to see. The biopsy had confirmed micro invasion and couldn't exclude macro invasion. I was distraught. I managed to see two more patients and then left in floods of tears. He booked me in for a cone biopsy the next morning. I was grateful for his haste, but would have preferred to hear the news in person and when I wasn't at work.

I went for the cone biopsy the next morning. I had been on the Internet the night before, scaring myself with reports of metastatic cancer of the cervix. I still couldn't believe it. I was very anxious and thought this was the end. I had the cone biopsy under general anaesthetic. On sitting up afterwards, I had a lot of bleeding. I had to go back into theatre under sedation and have a catheter, further stitches in the cervix, and a large vaginal pack. This was very uncomfortable. I then had to stay in overnight to check that the bleeding stopped. In retrospect, I wonder whether it was because there was a tumour in the cervix that it bled so much. I had to stay lying down for the next 24 hours, and was very uncomfortable because of the pack. I remember driving home from the hospital with my husband, and thinking if only this were the end of it. My doctor had already started talking about hysterectomy.

We then had a seemingly endless wait for the biopsy results. It was a holiday weekend and all the pathologists in the city had gone overseas to a conference. I finally got the results five days later. I was out at a medical meeting at a great local restaurant. My husband called me to come home as my gynaecologist had telephoned. It was 9:30 p.m. He told me that the biopsy was much worse than expected, indicating invasive adenosquamous carcinoma of cervix, stage 1b. The tumour was three centimeters (cm). The margins of the biopsy at the top were not clear. He had booked me in the next day to see a gynaecology oncologist whom I had heard of, and I knew had a very good reputation. Luckily, I had a surgical insurance policy and was able to go for all my treatments very quickly.

That night was awful. My husband and I were very upset imagining all the worst possibilities. The next day we went to see the oncologist. I felt very strange going into an oncology clinic. The doctor was great. He made it all seem very matter-of-fact. He booked me in for an MRI (magnetic resonance imaging) scan and chest xray, and said if those were clear, he would do a radical hysterectomy the following week. More waiting!

The day of the scan was the worst day. I felt very claustrophobic lying in the scanner. I was thinking I had cancer all through my body. I had found a small lymph node under my arm and was worried about it. We went back to the clinic to get the results. We saw the radiologist take the films in to discuss them, and he didn't come out for about 15 minutes. We thought that was a very bad sign. We were called back in and he told us the scan was clear. We couldn't believe it. My husband broke down in the car and couldn't stop crying. We now had some hope.

I went in the next morning for my radical hysterectomy. We had been told that if everything was clear at surgery, I had a 95% chance of cure. I stayed in the hospital for seven days. I had an epidural for pain, but I was not very happy with my post-op care. I was in a private hospital and the nursing staff seemed very inexperienced. They insisted on weaning my epidural down after 24 hours, and I was in a lot of pain. Nurses kept coming into my room, not knowing what surgery I had had. After the first few days, no-one came unless I rang my bell. I had an episode of severe wind pain after I started eating. It was so bad my husband rang the emergency buzzer and the whole resuscitation team arrived!! They didn't seem to understand that a radical hysterectomy entails a lot more that a normal hysterectomy, and tried to get me home after five days. I tried to be very assertive, but it was difficult. The whole experience has really helped me appreciate what patients go through in so many ways.

Unfortunately on the day before I went home, my histology results came through. One of the fifteen lymph nodes had microscopic cancer in it. I was very disappointed. I now had to think about whether to have radiotherapy.

The first week home after the surgery was hard. I felt pretty awful and had a horrible shoulder tip pain I couldn't get rid of. All in all though, I did well after the operation. My bladder doesn't feel quite as strong as before, but I have no leakage and my bowels have returned to normal. Following surgery, I was quite constipated and had to take medication. I had a supra-pubic catheter after the surgery which was removed on about the sixth day. I felt back to normal after six weeks.

I decided to sell my medical practice. We had been planning a long trip to the UK anyway, and the diagnosis totally changed my perspective on life. I had always worked hard throughout my pregnancies, only taking a few months maternity leave. I felt that whatever happened, I wanted to spend more time with my children. I was so relieved that I had already had my family. I have since met women who had to have this surgery before having children, or before feeling that they had completed their families, and it has been very difficult for them to come to terms with. I had a patient at my practice who had a radical hysterectomy at age 21. She was very glamorous and really made the most of her life. I thought of her often when I was going through my treatment as she was a great source of inspiration.

I was recommended to have radiotherapy and weekly cisplatin chemotherapy. It was explained to me that while the radiotherapy may not improve my survival, it would reduce the risk of local recurrence in the pelvis. Even with my medical knowledge, I found this difficult to get to grips with. What was the point of having extra-traumatic treatment, likely to leave me with ongoing side-effects, if it wouldn't enhance my survival? The chemo would help the treatment and survival by 10%. I finally came to realise that if the cancer had already spread outside of the pelvis, the treatment may not help anyway. A recurrence in the pelvis is not nice, as you may get a lot of pain and bleeding. Far better a recurrence in the lungs or liver. I didn't want to think about all this.

I went for various appointments, all of which seemed to be focused on the many side-effects from the treatment. I found it all very difficult. I was very nauseous from the weekly chemo, and found this the worst part. I was in bed for three days after treatment, and would get better towards the end. I had five weeks in all. I could only eat toast. I could not have possibly worked. Towards the end of the radiotherapy, I got diarrhoea, cystitis, and pain in the vulva. These abated about two weeks after the external radiotherapy finished. I had to miss my last chemo because my white blood count was too low and the risk of infection too high. Luckily I didn't catch anything.

I had my internal radiotherapy three weeks later. It was fine. Just like having a smear having the internal rods put in and out. I had them in for 22 hours. The Olympics were on, so I watched TV. I had light sedation and a sleeping tablet at night. I had tried to go in for it a week after my other treatment finished, but it was too early and far too uncomfortable.

I am now six weeks out and feeling good. Slightly tired in the afternoons only. I am feeling very optimistic and managing to enjoy life fully. I go for my first check up in two weeks. I have started HRT (hormone replacement therapy) as I was getting bad hot flushes at night.

My message to others would be that, yes, the treatment is awful, but it does actually pass quite quickly.

The main thing I have learned as a doctor is that the cervical screening programme is not absolute. I was always taught, and believed, that cervical cancer was a preventable disease. I now know it is not! Particularly the adenocarcinomas which can grow more internally, and are not picked up until later. Abnormal symptoms must always be investigated even if a smear is normal. At first I felt very let down by the smear system. I asked the lab to relook at my smear from the year before. It was again reported as normal. I then remembered that at least the smear this year picked up the problem, and if not, I would have been much worse off.

When I consider my future, I think of my doctor. He is a very relaxed person, very fatalistic. And he smokes heavily. I saw some statistics on TV recently indicating that at the age of fifty, a heavy smoker has a 50% chance of getting lung cancer. My doctor is about fifty. He said I still had a better than even chance of being here in five years. Put that way, I may be better off than he!

January 2001