It was on Christmas Day 2021, when I was 62, that I noticed my first symptom. I could only eat half of my Christmas dinner even though I hadn’t made a big plateful. I couldn’t eat anything else for the rest of the day. I was definitely surprised and then all I seemed to fancy for dinner for the next few weeks was soup. After two weeks or so I started eating normally again, but was off chocolate, which was unusual for me as I have a sweet tooth.
I felt okay really, but in April when I was getting my spring clothes out, some of my blouses that hadn’t fitted for years were suddenly fitting me really well. I couldn’t see it on myself, but I had definitely lost weight. This did surprise me as I hadn’t been dieting and couldn’t see any reason why I should be losing weight.
The next thing I noticed was that my tummy was hard to the touch. It had always been a bit round, especially since the menopause, but it had been soft, and all of a sudden it was as hard as rock. Next came tummy aches which would come and go and not seem to be linked to anything in particular, but they were bad! I was in agony with them, especially at nighttime.
May was the first time I went to the doctor who did a blood test and fast-tracked me for a CT scan. He did mention ovarian cancer, which I knew nothing about, but said it could be a number of other things and that cancer was just one possibility. Within a fortnight I’d had the scan and saw a gynaecologist for the results a few days later. He said it looked like a massive dermoid cyst on one of my ovaries and that I had been born with it. He said it was probably benign (although he didn’t look entirely convinced). My case was discussed at the MDT meeting the following week (a meeting where lots of specialists in different areas come together to discuss people’s cases). They all decided that it was benign despite the fact that my CA125 reading was 295. However, they said this could be caused by the cyst twisting around the ovary causing some torsion. That was a huge load off my mind and my panic was over.
I was put on the urgent list for surgery, but as it was believed there was no cancer present, I was no longer on the “super urgent” list. I had my operation at the end of August, and by the time the cyst was removed, it was 11 inches long! My gynaecologist also found four other lumps inside me that he couldn’t identify, but which shouldn’t have been there. He managed to remove three of them during surgery and they were sent off, along with the cyst, for urgent histology. I asked him if the cyst had indeed been twisted round the ovary but he said it had presented normally. I believe he was quite concerned at that stage as he was very much aware of my high CA125 reading and if that had not been caused by torsion, what was causing it?
At my follow-up appointment five weeks later, my gynaecologist told me that during the operation he had done a saline wash of my peritoneal cavity which was then analysed. The results came back as not containing any cancerous cells, so it did seem like they were right and my cyst was benign.
I had been told that the histology results should be back within two weeks. For some reason it took ten weeks to get them. I wasn’t really worrying about cancer any more at this point as I was busy recovering from the operation and didn’t really have much time to think about it. Luckily, I recovered well from surgery. My weight loss continued and all in all, I think I lost over two stone and went right down from a size 14 to a size 8. I’d recovered well, I was looking healthy and I was feeling good about finally being the right weight for my height.
On a Friday afternoon at the beginning of November, before I had even had my results back, I had a phone call out of the blue from a lady at the hospital, asking me to come in for an oncology appointment. As you can imagine that was quite a shock and also completely bewildering as I didn’t immediately understand what was happening. I had been told that the cyst was benign so why was I being invited for an oncology appointment? I was taken aback and asked her what she meant. Only then did it occur to me this might be something to do with the histology results, so I asked her outright. She said she would check it and call me back but she didn’t.
I then spent the entire weekend in a state of deep shock, trying to piece together what was happening. I could only assume that the histology had revealed cancer of some kind. This was finally confirmed on the Monday morning when my gynaecologist rang me up. He told me the cyst had turned cancerous (which only happens in extremely rare cases) and that the lumps were secondary cancers. He said it was stage 3 but he didn’t tell me that this meant the cancer was incurable. I didn’t know much other than that there were four stages of cancer, and I wasn’t in the last one. It was only by speaking to a neighbour of mine who is a nurse that I found out it was incurable.
I had the appointment with the oncologist that same week who confirmed the results and talked to me about chemotherapy. The chemo would not cure the cancer, it would only contain it and buy me some time. She wanted to put me on a combination of two drugs, carboplatin and taxol, but I didn’t want to lose my hair, and the oncologist had been very blunt about the cancer coming back. So, I refused to take taxol as I couldn’t see any point if it wasn’t going to cure it, and I certainly didn’t want to face the additional trauma of losing my long hair as well.
I had another CT scan in November which revealed several nodules in the abdominal area and a tiny lesion on the liver, but my oncologist didn’t know if the lesion was cancerous or not. She then gave me the devastating news that I probably only had two or three years to live. This is something that I simply cannot take in at all. I feel as if I have been robbed of my life, and I haven’t even reached state pension age yet.
I started chemo in December and began by taking carboplatin and caelyx. After three cycles I had a CT scan which revealed the cancer wasn’t responding to treatment and the tumour had grown. Caelyx was then replaced with gemcitabine and I’ve had three further cycles on this new drug combination, with another three to go. I am about to have another scan to see if this drug combination is any more effective. If the tumour has shrunk, it may be possible to perform surgery to remove some or all of it, but it’s risky and will only be palliative surgery, not a cure. If it hasn’t shrunk, it doesn’t appear that there are any other options left, in which case my life expectancy might be reduced to about a year. This is all very frightening. In the meantime, my CA125 reading has dropped to 18 – but the tumour is still there.
I am still processing it all really and find it all rather surreal, as I look and feel so fit and healthy. I can’t quite understand that a cyst can just go from being benign to being high stage cancer straight away with no warning.
Looking back, I can now link all the symptoms that I experienced since that Christmas Day, but that’s the benefit of hindsight. At the time I didn’t know that feeling full quickly was a warning sign. I didn’t know that loss of appetite was another symptom. I didn’t know that unexpected weight loss was also a symptom. I often think if I had known about these vague symptoms sooner, or if my surgery had taken place sooner, or if it hadn’t been decided so quickly that my tumour was benign, could it have saved my life?
My neighbour was the one who mentioned The Eve Appeal to me. I first looked at your website before I was diagnosed, then again after knowing it was actually cancer. I have quite a rare type, squamous cell carcinoma, and there is very little information out there. Because there was no specific information at the time, I e-mailed the Ask Eve nurse service, and they got back to me and said I could have a call with their nurse, Tracie. I have spoken to Tracie a few times now and she is just wonderful. She has answered so many of my questions and it’s been a huge help to me to know there is someone I can speak to who is so informative and helpful, and who also offers me her support.