Interview 91

Age at interview: 39

Age at diagnosis: 31

Brief Outline: Diagnosed with cervical cancer (Stage 1B squamous cell) in 1994. Radical Trachelectomy (first woman in UK to have a Radical Trachelectomy). 2 successful pregnancies after treatment.

Background: Housewife/part time student; married, 2 children.

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She had an abnormal cervical smear test, followed by a colposcopy which showed that she had an invasive form of cervical cancer. She was devastated when she got the diagnosis as she didn’t feel that there was any warning that something was wrong. Her initial treatment plan was to have a hysterectomy, but she didn’t have any children when she was first diagnosed, and had been hoping to start a family at the time. 

 

Following discussion with the oncologists looking after her, she had a treatment called a radical trachelectomy (surgical removal of the cervix but not the uterus) which had been trialled in France previously, but never been performed before in the UK. She was very relieved to have the trachelectomy as it meant her reproductive ability was still intact, and felt very much involved in the discussions about deciding the course of her treatment. The after effects of the operation were not too bad, though she did experience some discomfort that was similar to period pain. She has not experienced any other long-term physical side effects from the surgery and felt she was back to normal a few months after the operation. 

 

The Macmillan nurse involved in her care was very supportive, and kept her informed of what was going on. She felt that she could pick up the phone and call her anytime for help or advice. The nurse was able to give her all the support she needed and she didn’t need any other sources of advice or information. 

 

She had a son a year after her trachelectomy and now also has a 9 month old daughter. Both pregnancies were delivered via caesarean. She feels that she now lives life normally, and having had cervical cancer is part of the past. 

 

Her advice to others is not to overdo things, take your time, and be positive. She also feels it is important for women not to be frightened about asking for a second opinion and making their wishes about their future clear at the onset. 

 

 

She sought a 2nd opinion about the need for a hysterectomy for her cervical cancer and had a radical trachelectomy instead, which removes most of the cervix leaving the womb intact.

Why did you go for a second opinion?

 

My husband’s a doctor and he happened to be working at a particular hospital in London and he bumped into a registrar who worked for a consultant there, a gynaecological oncologist who, and the registrar said, "Don't do anything until you've seen this consultant." So [my husband] arranged it through the secretary and asked if we could have a second opinion, and he was willing. But we had to get a letter from the original consultant, so we phoned his secretary and she arranged for a letter to be sent so that I could be referred to the new consultant in London.

 

At that stage did you get any other information, did you look anywhere else?

 

My husband looked on the internet and in the medical library at work to try and find out as much as we could about cervical cancer and the stage that I was at. And I was diagnosed as having a stage 1B, so at least we had something to focus on and to look at, and we knew where roughly we were going.

 

And then the next one you found out about the trachelectomy?

 

Yes initially the consultant in London carried out all the same tests more or less again to be sure what he was looking at. He did then a CT scan, an IVP, which is a test on your kidneys, and did all the internal examination under anaesthetic again, and asked for the slides of all the colposcopies and everything to be sent from the first hospital to the new one so that the department there could have a close look at them, because he works very closely in conjunction with the microbiology department. And then he tried to do a cone biopsy, a large cone biopsy which he said might do the trick or might not, so he tried that but unfortunately the margins weren't clear enough - there has to be a certain margin around a tumour before they'll say that it's been sufficiently removed - the margins weren't clear enough, so he said, again we had a big meeting that time with several members of his team, the registrar, the Macmillan nurse, everybody was there, and we had a very open discussion about what was available. And it came down to the fact that either it was going to have to be a hysterectomy or there had just been a new operation carried out in France that they were willing to try here if I was willing to let them do it, and that was the radical trachelectomy.

 

So how did you feel about that?

 

We felt we had nothing to lose because if it didn't work then they could still do the hysterectomy afterwards, so we thought it had to be worth a try to see if it would give us the results that we needed. So I didn't actually know until I'd woken up from the anaesthetic what they were going to do, but they were successful.

 

When you woke up from the anaesthetic?

 

From having the radical trachelectomy. They said they would do what's called a frozen section, which is where they take a slice of, remove the tumour and send it to the lab immediately while you're still under anaesthetic and they phone the results back directly, so that they knew that they'd removed all the tumour. If it hadn't been clear then they would have proceeded on to a hysterectomy.

 

So you really didn’t know?

 

No, not until I woke up