Ovarian clear cell carcinomas account for just three in every 100 cases of ovarian cancer. So what’s it like to be one of those three women? Maureen Mackay talks about the realities of a clear cell diagnosis, and why having ovarian cancer has helped her to stay positive…
In July 2009, I was diagnosed with clear cell ovarian cancer.
Looking back, I had all the typical signs of ovarian cancer. I was bloated; I couldn’t eat. I also felt terribly nauseous and had post-menopausal bleeding.
Even when I started losing weight and my tongue turned black and yellow, I was still too scared to go and see my GP. A friend of mine had been diagnosed with ovarian cancer in her 20s and a work colleague’s mother had recently died of ovarian cancer, and I put off going to the doctor because I was petrified. I was scared that maybe I had ovarian cancer too. I also had a lump on my thyroid which was being investigated and I was worried I might have oesophageal cancer.
The road to diagnosis
Eventually, I did make an appointment to go and see the doctor. At that point, you could actually feel the tumour in my stomach. My GP quickly sent for an ultrasound and blood tests (my CA125 result was very high – around 2020), and within a month, I was in Aberdeen having my operation.
The first time I was told anything official was during the scan – 2 weeks after the initial GP appointment. I saw the gynaecologist that day and she told me that the ultrasound had shown that it was definitely ovarian cancer. She was really nice about it all. After that, I went for a CT scan, had a multidisciplinary meeting and then underwent surgery.
During the operation, my tumour ruptured - but fortunately the liquid sample didn’t show any signs of cancer. However, because the tumour had been sitting on my bowel, I was given six rounds of Carboplatin and Taxol chemotherapy as a preventative measure. As soon as the surgery was over my tongue started healing. I just felt so much better. The whole process – from seeing GP to the operation - was very quick.
Just before starting chemotherapy I received a phone call from a specialist nurse at the hospital. She told me that I had a type of cancer called ovarian clear cell carcinoma. At the time, I had no idea what this was or what it meant, and no one really explained it to me. Instead, I had to read up on everything myself. Luckily, one of my doctor friends gave me more details and explained that having ‘clear cell’ probably meant I had a poor prognosis. However, no one ever said that to me at the oncology unit – I had to ask my surgeon about it afterwards.
During treatment, I asked about the possibility of BRCA testing but was told I didn’t need it. Because my brother had prostate cancer in his 50s and my mum had an ovarian cyst in her 40s, I’ve since asked the gynaecologist to look into it again for me. My daughter has a little girl and I’m concerned.
I finished chemotherapy in January 2010 – 5 months after my initial diagnosis. Afterwards, I had regular check-ups every 4 months and then every 6 months up until November 2014. There is now no evidence of the disease.
I first heard about Target Ovarian Cancer when my CNS told me they were coming up to my local Maggie’s Centre for a Being Together day. Since then I’ve also acted as a patient representative on ovarian cancer guidelines – Scottish guidelines for treatment of ovarian cancer. Because I used to be a nurse, I know quite a lot about ovarian cancer anyway, and I wasn’t put off by medical terms or surgery details.
I retired from nursing last year. These days I enjoy going to yoga, walking and looking after my grandchildren. I’ve also recently joined the University of the Third Age! I think that having ovarian cancer did change me. I used to think ‘why me?’, but now I’m a bit more positive. Mostly my diagnosis helped me learn to accept things. It helped me get on with my life.
Target Ovarian cancer has announced funding for two brand new research projects for 2016. Researchers in Glasgow will look at novel treatments for ovarian clear cell carcinoma, and a team in Surrey will research supportive treatments for people who are receiving palliative or end of life care. Find out about the two new research projects.