Published January 2022

In September 2021 I was diagnosed with a borderline ovarian serous tumour.

It’s hard to know when my symptoms first started. Over the last seven years I had been prone to the odd bladder infection and bout of thrush. But during 2020 I just couldn’t seem to shift the feeling of needing to urinate. I drank lots of water, cranberry juice and just thought it was hormones, diet or that I was just very susceptible to cystitis and an irritable bladder. Symptoms would come and then go. I was also starting to feel a bit bloated every now and then. Eventually I realised with some prodding from my boyfriend that I needed to get things properly sorted, and after a few phone appointments with my GP I was booked in for a scan to check if there were any issues with my kidneys or bladder.

I went for a scan at a local medical centre. At the end the technician said that my bladder and kidneys looked fine but there was a cyst on my ovary. I went home and immediately got a call from my GP saying not to panic, but that with ovarian cysts they refer for a two week appointment at the hospital, and also that I needed to go for blood tests. I asked if this could be linked to all my symptoms and he said that it could be.

The gynae consultant that I saw explained that I had a cyst the size of a small orange around 8 x 9 cm, and that I could take time to think about what to do (the tumour markers were very low which was good news) but as it wasn’t going to suddenly disappear or shrink, removal would probably be the best solution, along with possibly my ovary and tube. There was also a small chance that if I left it, it would burst. I was very shocked and worried. I had never had an operation before. After taking some time to think, I decided I needed to go ahead with the operation and rang to be put on the list. The hospital were excellent, sending me for scans, giving me all the information I needed and the consultant was brilliant – I felt I really trusted her. About a month after this I got a call and they said there was a slot for my op in a month’s time, end of July 2021. I couldn’t believe it – how incredible that they could fit me in so quickly and during a pandemic.

Soon enough the day of the surgery came round. I was incredibly nervous but drew some inner strength, and can’t thank my boyfriend, and amazing friends and family for all their positivity and encouragement. I feel quite emotional looking back as all the nurses, healthcare assistants, operating department practitioner, registrar and consultant who looked after me so well and were so lovely. I even had a couple of medical students observing.

The cyst ended up being 10cm and as it was so large my ovary and fallopian tube had to be taken out too, all through my belly button – incredible! I had a stitch in my naval and two lower small cuts. All very neat. Luckily, I was able to go home that evening to start my recovery. Despite being in a bit of pain, I was so relieved and overjoyed that it was all over. The consultant arranged to see my in three months’ time for a follow up. I also felt as though all my symptoms had completely disappeared. I now recognise that what I was feeling but not able to describe very well was the feeling of something pushing on my bladder, which had now gone. After the swelling and bruising had gone down my stomach also seemed to be back to a more normal size and not bloated.

I was up and about fairly quickly – just very short walks initially but increased them each day and after four weeks was back to full fitness.

Unfortunately after the initial euphoria, it wasn’t quite the end of the road for me. I received a letter in the post from my consultant saying that she needed to see me again. The cyst which looked completely fine turned out to be a borderline serous ovarian tumour. I initially misread serous as serious – until a friend pointed out that this was obviously a medical term! I felt very anxious. The consultant was very kind and said it was quite unusual and unexpected as everything looks normal with borderline tumours (including blood tests) and it won’t show up until the cyst is sent away for testing. She said she had wanted to see me to explain before I got a letter from the oncology department out of the blue and panicked. I was very grateful for this. She explained a few options but said I would find out more at the next appointment. I was very sad to say goodbye to her and actually asked if I could stay under her care!

More on borderline ovarian tumours

Next appointments followed with a lot of options and I felt quite overwhelmed. I was very thankful that at my first appointment I was given an Ovacome booklet. This was the first time I had read something which made it clear and was easy to understand. It was also good that I could send the booklet and website link to friends and family instead of me trying to explain everything. It was quite a strange feeling as with a borderline tumour it isn’t cancer but is treated in the oncology department and it is hard to describe what it actually is. I also rang the support line and spoke to Annie who was a great listener, offered information and support, and followed up my questions via email. I also read and re-read the booklet a few times and scoured the Ovacome website for info!

After two appointments I decided to opt for re-staging surgery. This time for omental and paracolic biopsies to be taken and for my other ovary and general area to be double-checked for seedlings and abnormalities. Even though my CT scan was clear and my pelvis at the time of the operation looked normal the consultant wanted to check that nothing was hiding in the abdomen.

I have had the operation now - again the consultant and all staff were fantastic.

To finish the story... I've just got off the phone to consultant. Biopsies are clear so I will be put on conservative management with six monthly pelvic ultrasounds and blood tests until they can discharge me.


Read Elizabeth

Read Kirsty

Read Jemima