After being diagnosed with ovarian cancer in 1990, Christine explains how awareness has improved over the last 25 years, and why she believes there’s still more work to be done.
I’ve always felt that ovarian cancer was quite neglected. There’s still this embarrassment about it. I don’t think people know the effect that ovarian cancer and the relevant surgery can have on people. Just because it’s not as noticeable as losing a breast, doesn’t mean it doesn’t still have a huge impact. Twenty-five years ago I lost my omentum, my cervix, my ovaries, my womb – everything!
I was having a lot of back pain and feeling pretty uncomfortable generally. I was even having some bleeding after sex. Because I was someone who had suffered from heavy periods, I just put it down to that. I tried to find a reason to explain it away.
I’d been back and forth to my doctor for months with the pain. I was told all sorts of things - that the pain might be due to a pulled muscle in my stomach, or that I had adhesions from having my appendix removed as a child. I just felt there was more to it than that. In the end I insisted that they send me for a scan. It felt a little bit like it was all shrugged off until I decided to put my foot down.
The scan showed several ovarian cysts - which I then had to have removed.
I had a long chat with my surgeon beforehand. I was in my late 30s at the time and I already had two children. I told her I was quite prepared to have a hysterectomy, if necessary. It wasn’t too much of a shock to wake up and find that I’d had everything removed. Three days later the surgeon came around, pulled the curtain around my bed and told me that I had a borderline stage 3 ovarian tumour.
I was just gobsmacked. I had no idea until then that there was anything seriously wrong. I look back at all those months I’d gone back and forth to the doctor and I think the pain saved me. I don’t think my doctor would have bothered sending me for a scan otherwise. I felt did feel quite angry at him that he didn’t spot it before.
After my diagnosis my surgeon and I discussed whether I should have chemo or radiotherapy. I found the options a bit traumatic. I’d just been through major surgery and I almost wanted them to tell me what they thought I should do.
Before making a decision they decided to consult with a doctor at the Royal Marsden who had some experience of dealing with borderline ovarian tumours. She said that it didn’t make a difference whether patients were monitored, had chemo or radiotherapy. I was told that no matter what, the return rate for that type of cancer was between 24 and 28 per cent. Because it didn’t seem like chemo or radiotherapy made much of a difference, I was being monitored every six months, then every year and then it was every two years. Back then I was having a laparoscopy every six months with a 'wash' of the CA125, which would have shown up any malignant cells. After a while that had to be discontinued, as it was causing bowel adhesions. Eventually they just gave me an open door policy and told what kind of things to look out for.
It’s been 25 years since I was diagnosed and a lot has changed. These days people are far more understanding about borderline tumours. I remember my brother once saying to me that I was ‘lucky’ to have had that type of cancer. I think things have improved there. It’s not that I wanted sympathy exactly, I never wanted sympathy – I just wanted a bit of compassion. It does make me angry when I look back and remember things like that.
Back then there was no Google or internet to check your symptoms. I also think GPs were less understanding. I can remember my doctor at the time just wanted to brush it off. There wasn’t really any concern about how you would feel. It felt a little bit like you had cancer, they chopped it off and then you just got on with it. My friend was the only one I really cried to about it. Otherwise it was a bit of a no-go area.
I got in touch with Target Ovarian Cancer after I saw on Facebook that they wanted people to share their stories. I thought maybe I could help. I do think it’s very important to raise more awareness for ovarian cancer. It shouldn’t be that people are too embarrassed to go and see their doctor.
The problem is that people still aren’t as open about it as they should be. I know women who have left it too late to go to the doctor and it’s such a waste. If it’s caught early enough it has much better survival rates. Organisations like Target Ovarian Cancer do some great work, but ovarian cancer is still a neglected issue – and that’s really quite sad.
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Find out more:
- Find out about how you can raise awareness of ovarian cancer
- Read more stories from women with ovarian cancer