When Toni was told she had clear cell ovarian cancer she struggled to deal with the shock. She’d gone in to hospital for what she thought was a routine operation, and come away with a cancer diagnosis. Toni explains the challenges associated with having a rare form of the disease, why she’s so grateful to Target Ovarian Cancer and how reading other women’s stories helped give her hope…
After they did the first operation they came back and explained to me that they’d found clear cell ovarian cancer. It was a complete shock. I’d gone in for something routine – I wasn’t expecting anything worse to happen.
I’ve always had painful periods. In my mid-20s it got really bad and I went on the pill for a while. I wanted to get it investigated further and had to badger the GPs to do more tests. I went for a laparoscopy and they said I had mild endometriosis.
Later, when I had my two boys, the pain seemed to lessen considerably, but doctors did find a cyst. They said I should have an oophorectomy after I’d had my son, but I refused. Looking back now, I wonder what would have happened if I’d had that ovary out.
I’m quite skinny, so when a lump appeared in my tummy I was able to feel it early. I went to the GP, and although he told me he thought it wasn’t anything serious, he also said he would fast track me just in case.
Soon the cyst was so large I began to look pregnant. At this point the consultant recommended a hysterectomy. The suggestion upset me quite a lot and I opted not to go ahead. In the end I just had general surgery to remove the cyst. I was so used to having these gynae issues that I honestly thought it would be a routine operation. So when the doctors came round to tell me they’d found clear cell ovarian cancer, it was a complete shock. Thankfully it hadn’t spread from the cyst, but it was very distressing.
I couldn’t take it in. I couldn’t even cry because I had tubes up my nose. My first thought was about my two boys. My husband had to tell them, and my parents too. At the time of my diagnosis, my sons were 16 and 18. My younger son was very quiet when he heard the news and he didn’t want to talk about it. My older son did a lot of research. In the end I was very open with them and offered to answer any questions they had.
It wasn’t until I was out of hospital that I could accept it all myself. Luckily I had such amazing support from my family and friends. It could have been so much worse.
In the end I opted not to have chemotherapy. Doctors told me that clear cell ovarian cancer doesn’t respond well to chemotherapy – and that it only had a 30 per cent success rate in my type of ovarian cancer. I came so close to having the treatment anyway but in the end I decided I didn’t want to put myself through that. My eldest son was concerned when I said I wasn’t going to have chemotherapy, but he accepted my decision when I explained it to him.
I contacted Dr Rosalind Glasspool, a Target Ovarian Cancer funded consultant in Scotland. Dr Glasspool was the only person in Great Britain doing any research into clear cell at the time. She provided me a lot of support and information which helped me a great deal.
Since the surgery I’ve been really well, with the exception of having indigestion problems! I was off work while I recovered, but I went back just before Christmas. I was so excited! It felt amazing to get back to work. I couldn’t wait to get back to normal.
Finding out my cancer was rare and aggressive made me want to know more about it. In the weeks following my diagnosis I did a lot of research – including getting in touch with Target Ovarian Cancer. It really helped me to be able to phone them because I knew they’d understand. It gives you hope to read other people’s stories. I like to read about people who are positive regarding their diagnosis, even if their prognosis isn’t very good. Being able to read about other women who were going through the same thing I was – well, that really, really helped me.