First published in August 2018, updated in December 2021.

In May 2016, I saw my GP after experiencing some ongoing symptoms. These were namely a distended lower abdomen (which ended up making me look like I was in early pregnancy), a slight metallic ‘smell’ about me and a need to pee quite frequently (however, this wasn’t obvious at the time because I naturally drink lots of water and so always seem to be on the loo). I also had an overall feeling that something just wasn’t quite right ‘down there’ and I initially thought it might be something to do with the Mirena coil I had had fitted less than a year beforehand.

My GP ordered a CA125 test and told me that I’d have to wait 6 weeks for an Ultrasound on the NHS. I didn’t want to wait that long and so had one privately.  A week later, I had my scan and it showed quite clearly what looked to be a very large (15cm) ovarian cyst, sitting just above my uterus, in the middle of my lower abdomen. A few days later, I saw a Gynae OB who suggested that it was ‘likely’ to be nothing serious, just a very large cyst that would most certainly need removing via surgery. Due to my age, unremarkable medical history and CA125 being normal (7.9), he wouldn’t be able to refer me as an urgent case on the NHS for the surgery therefore I would have to wait for what could be up to 6 months before having the operation. I didn’t want to wait that long as I already felt I looked pregnant due to the distention (and potentially at risk of torsion as the "cyst" continued to grow) and so decided to have the operation done privately.

In June 2016 I had my first operation to have this ‘cyst’ removed. Pathology revealed it to be a borderline mucinous tumour. I was referred to a Gynae Oncologist and underwent my second operation 6 weeks later, to have the affected ovary, fallopian tube and my appendix removed. At the same time biopsies were taken from my omentum and abdominal washing was completed. I was staged 1a. I was lucky. Had my first gynae surgeon not ‘bagged’ my tumour before removal, or he had ruptured it in situ, I would have been staged 1c and potentially facing chemo. Due to my age, a full hysterectomy wasn’t advised. I have regular reviews with my Oncologist (every 3 months) with an ultrasound scan (external and transvaginal) every 6 months. In August this year I will be 2 years (No Evidence of Disease) NED.

I think it’s safe to say, I was shocked on my initial diagnosis. I am an otherwise fit and healthy 30-something year old woman who’s never really had any medical issues, so to find that I had a form of ovarian tumour was nothing more than shocking. And scary. I remember feeling numb when my first gynae called after my initial operation to tell me I would be receiving a call from a gynae oncologist that afternoon. I remember writing on a piece of paper ‘form of tumour that’s not benign but not malignant either’ as he explained what it was. The prospect of yet another operation so soon filled me with absolute dread.

More on borderline ovarian tumours

I was only 33 on diagnosis, married with no kids. So of course, I was naturally concerned how all this would affect my fertility. My husband was naturally shocked and worried too. As far as I am aware, I have been fortunate not to have had too many side effects from my surgeries. I have always been (and remain) very active, which I think has possibly helped my general feeling of wellbeing. Having lost my darling Mum to primary metastatic liver cancer in 2013 and recently, seen my Dad undergo treatment for prostate cancer – I consider myself lucky!

The Ovacome online forum has, however, been an absolute life saver for me. From the moment I was diagnosed, the other members on there, plus all the information available through the site, helped me enormously. I am still an active member as the fear of reoccurrence is very real for me (despite statistics suggesting the risk is low).  There also seem to be more and more women being diagnosed with borderline tumours and so I wish to try and help them through my own experiences, where I can.

I also joined a closed group on Facebook specifically for borderline Mucinous ladies. I don’t think I ever took my health for granted, but I certainly never thought this would be on the cards for me (at least not so young). My husband and I are still undecided about children (for all sorts of reasons) and I’ve been told that it is likely I’ll be recommended to have a full hysterectomy at some stage in the future. I have made peace with it all now. What will be will be. It still makes me realise just how frightening it is when you’re faced with the "C word" and the constant fear of it returning in some shape or form, no matter how old (or young) you are.

2021 update

I am now five years clear and have been signed off by my oncologist!


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