Despite her doctor’s reassurances, when Linda discovered her CA125 level was raised, she knew things were serious. Here she talks about her diagnosis, the support of her GP and why, thanks to medical advances, she’s still around to tell her story…
I knew it was serious when I came home to an answerphone message from my doctor; GPs don’t usually ring you at home. My CA125 level was 704. It’s usually less than 35. At that point the GP told me not to worry because lots of conditions could raise my levels. I remember thinking, ‘yes, but not that high’. I’m a nurse; I knew what a high CA125 meant. I knew it was ovarian cancer.
A bad sign
I’d been having problems during the festive season. My husband and I had gone to stay with friends but I just didn’t feel right, I was constantly tired and jaded. Not long after, we went on holiday and I remarked to my husband that I was putting on weight. I felt as if my stomach was getting bigger and bigger.
For a few weeks I thought it was just menopausal weight gain or mid-life changes. It was persistent bloating as it wouldn’t come and go. I was also having bowel problems and was tired all the time. I decided to go to the GP to talk about all of my symptoms. She thought it was probably thyroid problems and sent me to have blood tests done. Nothing came of it.
Despite the blood test results, my symptoms began to get worse. I started to feel full quickly after beginning meals and my abdomen became very hard. I went back to the GP and asked for more help because I knew something wasn’t right. She then ordered a CA125 test.
After an ultrasound and CT scan, I was given an appointment with the consultant. I was really pleased that my GP had sent me for tests so quickly. I went to this consultant’s appointment on my own, but they brought my husband in. I was told it was ovarian cancer and it had spread. The more she told me, the more I thought, ‘this is bad’. I had nodules of cancer in the omentum, liver and all the way up to my diaphragm. The weight gain, what I’d thought was just menopausal weight gain, actually turned out to be ascites.
I had three litres of fluid drained to make things a little more comfortable.
The operation and recovery was tough. I had an epidural, which was left in for four days, and I was on very strong painkillers. I found the first few days after the surgery very difficult. I felt much better after I was able to have a wash and go to the toilet by myself. Once home, my GP was supportive, which really helped. It was reassuring to have that extra support. After the surgery and subsequent chemotherapies, I showed no evidence of disease. I held the surgeon’s hand and said ‘thank you’.
Throughout my diagnosis and treatment, I received an amazing amount of support from family, friends and my church community.
Now I have appointments every three months, but I don’t have scans or CA125 tests. They are waiting for me to report any symptoms. I find this really strange, and difficult to manage.
I think the main thing about having cancer is how it makes you think of your mortality. It’s such a shock to hear I was stage IV. I felt like I’d only just begun showing symptoms. Although the treatment wasn’t easy, I was so grateful to have it. Decades ago it could have been so different for me.