I’d felt a lump in my stomach for a few months but didn’t think it would be anything serious. With no other symptoms I put it down to a whole host of other things, but eventually booked an appointment with my GP.
Nothing was identified on an ultrasound scan but a CA125 blood test came back as 1,737. A normal level is usually less than 35.
I met with my consultant who explained that I would need a full hysterectomy and if they found it was cancer during the procedure then I would also need chemotherapy. My surgery was scheduled for the first week of March and when I came round was when I received my diagnosis. Stage 3c ovarian cancer.
The surgeon explained that during the procedure they'd identified that the cancer was also covering my abdomen and bowel. He explained it as little ‘pearls’ of cancer that had been too small to register on the initial scan.
Because of this, the decision was made to remove just my ovaries and the main tumour and then refer me for chemotherapy before a second surgery to remove the rest.
Second surgery and responding to chemotherapy
My chemotherapy started the following month, and I had three sessions before my second surgery. I didn’t have that many side effects following these initial sessions and I tried to remain positive in the lead up to surgery.
On 15 June 2023 I had a full hysterectomy, with small spots (or pearls as they had been explained) of cancer removed from other areas as well, including my bowel. In total the surgery took nine hours.
Afterwards, my surgeon explained that it had gone well but the chemotherapy hadn’t had as much of an effect as they had hoped. I was given a chemotherapy response score of one – which gives an indication of how well I was responding to the chemotherapy. It was very difficult news to hear – although it could also explain why I hadn’t experienced any severe side effects.
I then went on to have three more sessions of chemotherapy, finishing on 31 August. It was at this time that I first reached out to the support line at Target Ovarian Cancer.
I felt very down after hearing my chemotherapy response score and was having counselling, but I just wasn’t getting what I needed from it. It wasn’t the right thing for me at the time.
As soon as I spoke to Val on the phone, I felt better. She took the time to answer my questions, explain everything thoroughly, and was just a reassuring voice at the end of the phone whenever I needed it.
In October, I had a clear CT scan and a CA125 level of 32. It was confirmed that I had no evidence of disease (NED) – in that moment, my treatment had worked.
Moving on to a maintenance drug
I was really happy when my treatment was over, especially after hearing the NED news. But it’s almost muted excitement as there is always that underlying anxiety that it could come back. What will the future hold? What’s next for me?
I was prescribed the PARP inhibitor, also known as a maintenance treatment, Niraparib. Initially, I struggled with side effects. Having dealt relatively well with chemotherapy, it was a bit of a shock. Especially as chemotherapy had a schedule to it, you could mostly plan around good days and bad days – whereas Niraparib was every day.
Thankfully, after talking it through with my consultant, I persevered with the Niraparib and it’s getting easier each week.
At the end of December my CA125 level had started creeping up again and is now at 159. This is being closely monitored by my oncologist as again nothing is showing on an up-to-date CT scan yet.
Finding the My Next Steps course
During one of my conversations with Val she mentioned the charity’s My Next Steps course. It immediately sounded like something I wanted to be a part of – the right thing for me and at the right time.
Some cancers are more treatable than others and an ovarian cancer diagnosis is a scary one, so just to be able to speak to other women who are going through a similar thing sounded amazing.
Talking through the same hopes and fears, the same questions, it quickly became a forum where we could ask anything. From the best shampoo to help hair regrowth to booking travel insurance after treatment.
As someone working in the healthcare industry, as an occupational therapist, I felt like I looked a bit deeper into what was happening to me at every stage of treatment. I always wanted more information.
However, when you’re going through it you do miss opportunities to ask more detailed questions – there is just so much to get your head around in a short space of time. My Next Steps presented me with the opportunity to discuss things in real detail and benefit from the knowledge of specialist nurse advisors and expert speakers.
A highlight of the course was definitely the bond between us women and I know that will continue. We finished the course ‘officially’ in November but have already got a date in the diary for this month to meet again.
It felt inspiring to be a part of something bigger than just me – something that will hopefully continue to grow and empower other women living with an ovarian cancer diagnosis.
Giving back and raising awareness
I remember thinking that there was nothing in my GP surgery about ovarian cancer. Had I been more aware about it as a disease, and its symptoms, would I have booked an appointment sooner? I want to do anything I can to help raise awareness.
Immediately after my diagnosis I felt overwhelmed with new emotions and different questions. It was very reassuring to share my story and be supported by a group of women who were also going through a similar experience. This, alongside the support of my family and friends, helped me face the challenges of my journey and reminded me that I am not alone.
I wouldn’t hesitate to contact Val or Rachel via the support line in the future and will similarly support the charity as much as I can going forward to give back after everything it’s given me. If sharing my experience can help just one person get diagnosed earlier than I was then it will be worth it. Awareness is so important, and I will continue to do what I can to increase it.
If you’ve been affected by this story and would like to speak to a specialist nurse, you can call our dedicated support line on 020 7923 5475 or contact us: [email protected]. We're open from 9am until 5pm, Monday to Friday.
If reading this story has helped you, join the Ovarian Cancer Community to connect with more people affected by ovarian cancer: www.targetovariancancer.org.uk/onlinecommunity
