Interview OV43

Age at interview: 62

Age at diagnosis: 61

Brief Outline: Ovarian cancer diagnosed in 2002 following constipation, frequent urination, tiredness, diarrhoea, bloating, umbilical hernia, and breathing difficulties. Treated by surgical removal of ovaries as remaining tumour was inoperable, then chemotherapy.

Background: Retired school teacher; married; no children.

Spent hours travelling to the hospital for chemotherapy while feeling ill.

We live in a wonderful rural area here which has it's drawbacks because it does mean that the nearest hospital for most treatment is at least an hour away and the oncology hospital is a two hour journey away. And this meant that maybe four hours in a day could be spent travelling and several hours spent at hospital having chemotherapy at a time when you really did not feel like travelling these distances. And I would have to dose up on Imodium because I was perhaps having diarrhoea and couldn't cope with a two hour journey. 

Experienced prolonged treatment of symptoms before referral.

Yes, I started to feel unwell about four years ago, I had what I used to jokingly call terminal constipation. Very persistent constipation which I didn't seem to be able to do anything about, and in the end I consulted the GP about it and was given a long list of things like psyllium husk and linseed, to take away and use them as dietary additives, which I did. The constipation persisted but I persisted too, to manage it at home.  

I also complained of tiredness and I was given a battery of blood tests and was found to be lacking in thyroxine, which was also given to me to take regularly, and I started to have problems with my bladder, and having to go to the loo three or four times in a night and having to rush off during the day and go to the loo. And again I went back to the surgery with this and I was given some very helpful 'Help the Aged' leaflets, one called 'Incontinence' and the other one was called 'Laughter Without Tears', and they told me how to exercise my pelvic floor, which I went away and did.

So I went away and managed these symptoms, although they were very unpleasant and the tiredness was getting worse. I resigned from my part-time job because I just couldn't be active for a whole day any longer, but I didn't think that there was anything seriously wrong with me until summer last year, when the constipation suddenly changed to uncontrollable diarrhoea and I became very bloated. I had an umbilical hernia, problems with breathing. I was just so tired that after the first few hours in the morning I could really do very little at all. And I went to my GP and I think she suspected irritable bowel syndrome so she gave me a medication called mebeverine which I was to take before meals which would slow down the diarrhoea.

It didn't get any better and I was really feeling extremely unwell, I was absolutely enormous, I looked about seven months pregnant. I couldn't lay down in bed at night, and I went back to the GP again and she decided to refer me to the gastrointestinal unit, but she said I would have to wait some time because she didn't consider it was an urgent need, she thought it was just IBS.

Worked out what her diagnosis was by searching the internet for words used by the health professionals investigating her case.

The next day I had an ultrasound test and the radiographer said 'you've got a lot of fluid there' and I said 'yes I know, I've been saying this for some time', and she said 'it's called 'ascites''. This was the first I'd ever heard of this word and when I got home I went through Google and looked it up, and by a process of elimination I realised that whatever I had was malignant because none of the other things could possibly apply to me.

I spoke to my nephew on the phone, who is a surgeon, and he said 'if you have ascites then really you have some, a very serious complaint and they should be doing something about it now' and he suggested that I phone the consultant.  

Anyway I had a phone call back about two hours later from the senior registrar saying that she'd had a look at the scan results and that it was an ovary, she'd cancelled the other tests and she had made an appointment for me with a gynaecologist for a couple of days time.

I now had another word to put into Google, which was 'ovary', so when I got home I put in 'ascites' and 'ovary' and every website I came up with said 'ovarian cancer stage 3C'. And I went to see the gynaecologist and he confirmed this, he said 'it is ovarian cancer' and I said, 'what stage?' And he said '3C'.
 

Her surgeon warned her that he might have to do a colostomy as well as a hysterectomy.

Anyway the, the next appointment came round the following week and I didn't think the news could get much worse but it did, I was immediately handed over to the gynae-oncologist who said 'your CA125 is off the scale at 5000 plus, this is a particularly aggressive cancer and we propose a hysterectomy and de-bulking, followed by chemotherapy', and he explained precisely what would be done during surgery, and I said 'okay, fine'.

And he did mention, he just threw in casually the word 'stoma' and I, this frightened me and I said 'I do not want a stoma' and he said 'well it could just be temporary'.

During the day I'd had the stoma nurse come round and visit me and she had marked two possible stoma exits on my abdomen but I was willing to have a temporary stoma if it meant, if it gave my system a chance to recover from the cancer.

Describes a trial where a rise in women's CA125 prompts randomisation to further treatment or to wait until symptoms occur.

I go back every three months for a check up. I am taking part in OVO5, which is a clinical trial. So each time I go for a check up I have a blood test taken. This is not standard treatment, the standard treatment is that when you go for a check-up they will think about testing your blood if the symptoms are returning, but being on the clinical trial I have my blood tested each time for the CA125 but neither myself nor my consultant knows what the result is, it goes to the clinical trial centre.

If my blood, my CA125, starts to go up, I will be randomly allocated to one of two groups, one of which will go onto chemotherapy straight away as soon as the tumour marker starts to rise, and the other group won't, it will just carry on with the standard treatment of waiting until the symptoms return. This is to see which group survives longest but it's also largely concerned with quality of life, to see if there is a difference.

So if you're not randomised to further chemotherapy would you be told that your tumour marker was raised or not?

No, no.
 

Her CA125 level dropped as she went into remission after her treatment ended.

When the chemotherapy was over I was by this time feeling quite a lot better. I'd had a lot of pain in my abdomen in the initial stages of the chemotherapy but that had gradually got less and less as I suppose the cancer was disappearing, and I went back a few weeks later and had another CA125 which showed in single figures and I was announced to be in remission, which I think was quite a miracle considering where I'd started and the journey I'd had through, that I was to all intents and purposes, free of cancer.

Had her ascitic fluid drained to relieve her discomfort while still having diagnostic tests.

He was very good because he could see I was in such distress with the ascites and he made a, found a bed for me that night and he came in that evening and did a paracentesis and I actually had six litres of fluid drained off me. Six litres of fluid, which appeared to have been invisible to various other people. I felt a lot thinner afterwards but I didn't really feel, I thought I would feel better but I didn't, I felt really battered and ill.

Her husband had a series of small strokes and depression and could not look after her.

It was around this time that I became conscious that my husband was acting abnormally. He was very angry about the illness and we didn't know at the time but he was having a serious of small strokes, and his behaviour and personality changed. And because he was angry that I was ill and couldn't do things anymore, he became extraordinarily aggressive towards me, which made life very difficult. He didn't, I don't think he could help what was happening, but at a time when I needed, the first time in my life I needed somebody to look after me, there was nobody there and I was having to put up with a lot of aggression and anger and shouting.

When I came back from hospital that third time as an inpatient, he actually did have a stroke which was noticeable. He fell over and couldn't speak and couldn't remember anything, he couldn't walk. And it was only then, and later when he had had a brain scan, that we realised his behaviour change had been due to a series of small strokes, but it did make my life extremely difficult for some months. He became very depressed; it took him a long time to get over it.