Sally's story: After losing my Mum, I wanted to take control.

Mum became unwell in January 2022, with an upset stomach, severe stomach pain, back pain, indigestion and bloating. She saw her doctor several times as her symptoms got progressively worse. Eventually, we found out Mum had ovarian cancer.

This news all came very quickly and was so difficult to take in.  I already knew that ovarian cancer had poor survival rates, so I worried this was likely to be very tough for mum. The timing felt incredibly cruel, as we had only just lost my dad to prostate cancer.

Mum spent two months in hospital before coming home.  She had chemotherapy, but it didn't shrink the cancer enough to enable surgery. She was determined not to give into the cancer and did everything possible to stay alive. But her cancer had already spread by the time it was diagnosed, and the odds were stacked against her. Mum's sister Carol died from pancreatic cancer in July 2022 and two months later mum also passed away.

Before mum died, she was tested to see if she had any of the BRCA1, BRCA2 and PALB2 faulty genes. When the results came back, they were negative, which felt like great news. But I also knew that the chance of breast cancer was normally only 14% and the chance of ovarian cancer was only around 2%. Yet all the women in my mother's and grandmother's generation had had one of these cancers and my aunt Carol had had breast and pancreatic cancer. Plus, my dad had had two separate cancers and one of my sisters had had breast cancer.

So, when I thought about this more, mum's negative genetic test results didn't give me much comfort.  Instead, I wondered about other faulty genes that mum had not been tested for, about if there was another faulty gene that had not yet been found, or if my dad had had a faulty gene.

I decided that whilst I couldn't change my family history, I could try to reduce my risk of cancer. I knew that a healthy diet and exercise were both important, so I paid attention to this. I also had annual mammogram screening, rather than 3 yearly, due to my family history.  I was reassured that the outcomes for breast cancer were much better than they used to be.  This meant that I felt that my breast cancer risk was reasonably controlled. But I worried about the poor outcomes for ovarian cancer and the lack of screening for it.

From working with Ovarian Cancer Action, I knew most ovarian cancer starts in the fallopian tubes and that is very hard to detect early.  I had also learnt that risk reduction surgery to remove the fallopian tubes and ovaries reduces the risk of ovarian cancer by up to 95%.  After a lot of thought I asked my doctor for a referral to a gynaecologist to discuss this. Whilst all operations have some risks, I felt that the risk of this surgery was less than my risk of getting ovarian cancer without the surgery, and that taking this step would give me more peace of mind.

My consultant agreed that given my family history I could have risk reduction surgery. The operation took place in November 2024.  I was to have two planned procedures under general anaesthetic; firstly, a hysteroscopy to remove a coil that my doctor had been unable to take out normally and secondly, risk reduction surgery to remove my fallopian tubes and ovaries.

The first procedure turned out to be difficult, as they couldn't find the coil. I was x-rayed to locate it and thankfully it was found. Somehow it had migrated from my uterus to my stomach!  So my consultant performed keyhole surgery to remove this, and then my fallopian tubes and ovaries. That was quite a shock for me when I came round.  It wasn't something I was aware could happen and I had had zero symptoms. The medical team were fantastic though, and I was very pleased they were able to remove the coil without any further complications.

Afterwards, I was quite frail, however, I managed to go home the same day.  I felt bruised and achy and couldn't do much in the first couple of weeks. I had to avoid lifting or doing anything that might strain my stitches.  My stomach was very swollen, and I needed to wear comfy clothes for a month. I missed being able to exercise, but I was able to go out for gentle walks. I gradually built this up, which helped me to regain a sense of normality.

I also had hormonal changes, due to my ovaries having been removed.  I was very hot, especially at night, and I couldn't sleep well. That was another surprise, as I was 58 and through the menopause. However, my doctor explained that even post menopause, your ovaries still release some hormones, hence my overheating symptoms. He increased my HRT prescription whilst my hormones settled down, and finally I felt more normal and could sleep properly.

My husband, family and friends were very supportive while I was recovering, making sure I could focus on getting better.  My work colleagues were also very understanding, and I was able to gradually return to work.

I have been asked how I feel about the surgery now it is done.  Whilst it was a big decision, my overriding feelings are thankfulness and relief.

First, I am very grateful to all the NHS doctors and nurses who looked after me.  The care I received was amazing.

Second, I am very pleased to have taken back some control over my cancer risk.  With a family history like mine, you can feel a bit like a sitting duck for cancer. My surgery means that I now feel less like that.

Looking forward, now I have recovered, I will be taking part in OCA's Walk In Her Name challenge, walking over 100km in March. It is a great way to make sure I get outdoors more and to dedicate some quiet time to thinking about mum.  The challenge also helps raise funds for research, to help achieve OCA's goal to make ovarian cancer a survivable disease.

Last March nearly 2,000 people took part and raised over £250,000. This year we want to beat that. The challenge is open to absolutely anyone. To find out more, sign up or just sponsor a walker is really easy.

Looking out further, I feel very privileged to work with Ovarian Cancer Action and to help raise awareness of ovarian cancer. Ovarian Cancer Action's focus on research is so important to me. I believe that prevention, earlier detection and finding better treatments are the best way to make ovarian cancer a survivable disease.