News & stories Personal stories Linda Around June 2020 I had a pain in my left-hand side just under the ribs. It was intermittent. I went onto the NHS website to look at symptoms, but couldn’t connect it to anything in particular. However after three weeks it still hadn’t gone away, so I spoke to my GP. I actually work in a GP surgery (not my local one), so I was aware of how difficult it was for GP practices to manage appointments during Covid. This made me a little reluctant to contact my local surgery, but I did it anyway. I was offered a telephone appointment, and then was called in to see the GP in person. She couldn’t find anything – there was no clear lump and my abdomen wasn’t painful to the touch. She ordered some blood tests and urine samples anyway. The results came back showing that my CA125 was raised. I wasn’t too concerned at the time, as I didn’t have any of the other common symptoms of ovarian cancer: bloating, trouble with my bowels, etc. I was put on the two week referral list for an internal scan to investigate further. This showed that there was a mass in my pelvic area, although they couldn’t tell at first what type of mass it was exactly. It was larger than 30 centimetres. I was then sent for a CT scan, which showed that I had nodules on my diaphragm, my appendix, my bowel, and other places. I was referred to the gynae team. With hindsight, I had actually been suffering with bladder incontinence for the last four or five years, which had been put down to menopause. The incontinence had been getting gradually worse, which must have been a result of the mass pressing on my bladder. I had been doing lots of exercises to strengthen my pelvic floor, but these hadn’t led to any improvement. I had complete debulking surgery to remove the mass and nodules. My appendix, omentum, and part of my bowel were removed. During the operation, the team discovered that there were actually two tumours present. In total the surgery took around eight hours. Unfortunately there was a leak where my bowel had been operated on, so I had to have a second surgery five days later. I now have an ileostomy. I was quite unwell and had to stay in hospital for four weeks. I was looked after by two teams during this time, the gynae team and the colorectal team, seeing as I had had such extensive surgery on my bowels. I found this quite difficult, as the colorectal team were only interested in how my bowels were doing, and I didn’t see the gynae team as much. Around two weeks after surgery my diagnosis of ovarian cancer was confirmed. I have low grade serous ovarian cancer, which is a rarer type. I was told that it’s a much slower growing cancer than high grade serous. My tumours had successfully been removed during the surgery, but I was offered chemotherapy as a ‘belt and braces’ option, to make sure that nothing was left. I had six cycles of carboplatin, which brought me up to January 2021. Since then I’ve been taking letrozole, which is typically used to treat breast cancer, but is now being used as a maintenance treatment to stop low grade ovarian cancers from growing. I’ve joined Ovacome groups but it can be hard because most people aren’t on the same medication as me. I’ve been generally very well since my chemotherapy, although I did have a few side effects from the letrozole. I’ve mainly had bone and joint pain, which has recently developed into foot pain. It’s not debilitating (I can continue to exercise and walk), but I do get a lot of pain first thing in the morning and immediately after exercise. I just take a paracetamol for this if it’s particularly bad. I’ve spoken to my team about this, they said that could change the medication but that the drugs all have very similar side effects, so it wouldn’t necessarily resolve the problem. I do a lot of walking and I’ve recently joined the Ovacome Tuesday morning exercise class. This incorporates a bit of Pilates which I’ve never done before in my life and I’m really enjoying it. I think that these classes have helped with my foot pain too, which is great. I have joined the Ovacome forum, but I do have mixed feelings about forums in general. I was on another forum previously and had to come off it because I found it really difficult to read about other people’s experiences. It made me feel really down, because most of the people who tend to post are those who are having a difficult time. I then also felt guilty, because I was doing well. However I do find it helpful to keep up with the Ovacome forum, because there are occasionally really helpful posts, for example about Covid jabs and other practical aspects of living with ovarian cancer. As hard as I do find it to read the forum sometimes, it is very nice to see all the lovely and kind replies that people leave in response to others’ posts. It’s so nice that there is a community there to support the people having a really tough time. If I do ever have a recurrence I can imagine that I might want to go on there and ask lots of questions and get support from others. When I went through my initial diagnosis I didn’t know about Ovacome so I didn’t get that peer support from other people going through the same thing. I came across Ovacome through Google. I do think that health professionals should mention the service early on to their ovarian cancer patients, because the time with your consultant is often limited so you aren’t always able to talk through all your thoughts and questions. I’ve had amazing support from my family, but at that time I didn’t want to upset them too much, so it would have been nice to connect with others going through a diagnosis. Even just knowing that there are other people out there going through the same thing as you is really helpful. From reading other people’s stories, it seems that ovarian cancer is very difficult to diagnose at an early stage. When I asked my consultant whether there was anything that I could have done to get an earlier diagnosis, she was adamant that there wasn’t. There’s no screening programme for ovarian cancer, so it’s very hard to catch it before you start having symptoms. Looking back at my experience, I did have a few symptoms which might have been the cancer, but which were put down to menopause at the time. I think there needs to be less assumption that vague and unusual symptoms in women over 45 are just down to the menopause; they should be investigated properly.