Interview OV18

Age at interview: 38

Age at diagnosis: 33

Brief Outline:

Ovarian cancer diagnosed in 1997 following investigations for infertility. Treated by surgical removal of affected ovary followed by chemotherapy. Diagnosis revised as 'borderline' and further treatment aborted in preference for regular monitoring.

Background:

Doctoral student, married, two children.

Her cancer was discovered during infertility investigations.

Yep. Well, back I guess it must be in 1996, my husband and I had been trying to have children for about a year, maybe over a year actually. So at that point we decided to go and check things out with the GP. And my husband was looked at and, you know, obviously had a sample taken and everything was fine with him. So it seemed quite inevitable I thought that (laughs) there was something possibly wrong with me. 

I was referred by the GP in London to a specialist gynaecologist and, basically went through the sort of process of having some blood tests taken and 21-day progesterone, which everything seemed fairly normal so I was obviously ovulating, but you know, obviously not getting pregnant. 

So they decided to call me in to have a laparoscopy, which was done, must be back end of October '97, and, well I just remember waking up from the laparoscopy with about half a dozen doctors and nurses sat around my bed, and then they told me that they'd more or less abandoned the, what they were going to do with flushing fluids through the, with the Fallopian tubes and various other things, because they'd discovered a lump on my left ovary which they described as suspicious.

Wonders if her cancer might have been triggered by a severe bout of food poisoning.

Do you have any ideas about what causes ovarian cancer, why you should have developed it?

No, but I mean we've mentioned this to various doctors and things like that, and you know. People look at you as if you've got two heads. But back in 1990, 1990? 1991, we went on holiday to Corfu, my husband and I, and we were both absolutely flattened with food poisoning, really severely. As was pretty much everyone else in the hotel. To the point where, in the entire week, we didn't come out of the hotel. Really really bad. And ever since then we've both had problems in' I mean I developed this problem with my inner ear and balance and vertigo, which is related in some way to the stomach, because, you know, stomach affects balance and, you know, things like that, supposedly, I mean, I've read about that. 

He had, he's had bladder problems, all manner of bladder problems. And then I get this, you know, problem with ovarian' this ovarian problem. And cystitis as well, which is I suppose is some ways is all in the same kind of area. And you know, I mean they may all just be completely coincidental, but we were two fairly fit people who did quite a lot of sport and exercise, we, you know, eat fairly healthily, we don't smoke, we sort of drink in moderation, you know. And you know, things happen, with viruses and bugs and they get in your system and, you know, bowels are very close to all the female bits and bowels are close to the bladder' Don't know, that's my feeling. 

Had a second operation cancelled because her doctors decided to monitor her 'borderline' cancer...

The operation was on a Wednesday and I had to check in on Tuesday afternoon. And we got there, I think it was two o'clock check in time on the Tuesday, it must have been about the 26th or something of July, and, just as we were coming in to the ward, the consultant was doing her rounds. And she saw me and she pulled me off into a side room. And at this stage I'm thinking in terms of, I'm checking in for hysterectomy, other ovary out, massive course of chemotherapy. 

She pulled me into a room and said, 'Look, you know, you're not having the operation tomorrow. We have sought a second opinion on the histology from another hospital, and it has come back saying that it's borderline'. And she explained that that meant, as we thought, no treatment, you know, we just monitor it. She said, 'But, you know, I'm keen to get a third opinion, with your permission, I'd like it to go to the international expert, a professor, for the third opinion and, you know, we want to wait to see what he has to say. And that will take a couple of months'. 

And then I went back to work, you know, and sat there and just waited for the third opinion to come through. It finally did in the September '98 and, basically it was in line with the second opinion that this was borderline and it needs to just be monitored. And the advice from the gynaecologist was, 'Well look, you know, it was your original ambition to have children. We really think that you're ultimately going to have to have everything taken out, but want you to basically try and get on with having your children as soon as possible, and, you know, we'd like you to have IVF, try IVF to speed up the process'.

Her oncologist spoke to her in an insensitive way.

It was a few weeks before they could start the chemotherapy. I remember in the intervening period talking to the oncologist about the chemotherapy treatment saying 'Well you know'.' Well I had , I had two concerns about the chemotherapy' one that would destroy my fertility, and he rather sort of, I guess, tactlessly said along the lines of, 'In your condition dear you shouldn't really be worrying about children! Think of adoption if you have to'. Which was rather insensitive! I'm sure he didn't quite mean it that way. And secondly having to sign a form to have an AIDS test before I could have, you know, obviously chemotherapy as it reduces your immunity. To which I said, 'Well, that will affect my life insurance policies!'. But I think the answer was equally on the lines of, 'That's the least of your worries at the moment really', sort of thing, so you know, kind of, I was still getting quite negative messages from the medical profession.

Was concerned that if she lost her hair from chemotherapy everyone would know she had cancer.

I think the second time round it was like, God this is going to be a long battle, you know, a really long battle, and, you know, everyone's going to know, I'm going to have, all my hair's going to come out, what am I going to do? Everyone's going to know, you know, what's going on, and that was, I think, more of the concern really. 

It would really kind of throw your life into turmoil, and change the way that other people saw you.

Yes I think so, yeah, you know, because I always' I mean I suppose now when I'm out in the street, if you sort of see somebody with like, you know, no hair or, you know, they've got a scarf on or something like that, a woman, and you think well, you know, pretty sad really. 

So I think that, it's the visible thing is very important actually. It was very important to me, and it's not because I'm especially vain, I don't think, I think it was just the fact that everybody would know, you know? And there is an embarrassment factor I think people feel, like, oh God, you know, I sort of stand out, I'm not normal, and you know'.

Wanted to limit the number of people who knew she had cancer but more people found out later.

And you didn't tell many people about your diagnosis initially, did you?

No. I mean, parents, obviously brothers and siblings. The guy who worked for, well was my junior. The healthcare, the acupuncturist, the girl who was my bridesmaid, and that was basically it. I mean subsequently a couple of people were told because things kind of got in the way, you know, where I couldn't do something because of it, or whatever. And the timing, so I had to tell a few people. And then I guess, you know, more people had to be told when I was going to go in the second time. That was very hard actually, very, very hard.

But in the end it didn't happen, so they weren't told?

Oh yeah but it got around, it had definitely got around.