Earlier this year, I had a 20cm stage 1 mucinous borderline tumour removed, along with my left ovary and fallopian tube. A borderline tumour is neither completely benign (non-cancerous) nor cancerous. The cells are slowly dividing and are not likely to be invasive.
Despite being caught early enough, during the weeks from diagnosis to the histology report (which showed it was borderline) I endured what every woman does going through this experience. The uncertainty of not knowing whether what’s inside us is cancer, and what that word ‘cancer’ means for our future.
I'm grateful that it was caught early enough but it has been an upheaval dealing with the reality of this diagnosis.
A bit about me
My name is Lucy, a 28 year old Biomedical Scientist in Cumbria. I’m 5ft 3inches and can often be found practising Brazilian Jiu jitsu or wrestling. When, in April 2023, I felt my abdomen was getting hard, I thought my Brazilian Jiu jitsu and wrestling was paying off(!) but as I looked more closely I noticed there was no definition, instead it seemed to be a lump. As the weeks passed it started protruding.
Prior to this I'd noticed a change in my periods – I would have a really heavy flow, then a light flow, with a lot of abdominal pain similar to period pain throughout the month. I’d also been spotting in the months leading up to this and had pain during sex.
I wondered if it was to do with the copper coil contraceptive I was on, but I had two appointments to check it and it looked fine. Alongside this, I had a flare ups of my IBS, bloating, extreme fluctuating bowel habits, or so I thought.
Passing urine became painful and so frequent I was getting up multiple times during the night. I was also suffering with frequent acid reflux and night sweats. When I felt this lump in my stomach it quickly changed into a pelvic mass so I decided I’d visit the GP.
The healthcare team who acted quickly
My GP was really good, as was all of my healthcare team. At the first appointment, I was asked to do a pregnancy test which was negative and CA125 blood test (non-specific ovarian tumour marker) as well as some other tumour marker blood tests.
Working in a path lab, I was familiar with this and at this point I wasn’t sure whether it was a blessing or a curse to know what I knew about these tests.
I never realised that there wasn’t a screening programme for ovarian cancer, and that the CA125 blood test along with the ultrasound, CT and MRI can only indicate not confirm. My CA125 result came back high, and from then I was worried.
I was told if these scans show the mass to look complex I’d be referred to the specialist hospital for surgery. The appointment where I was supposed to be given all the information for what this mass was and how the surgery would go, didn’t go to plan.
My partner, John, and I left after five minutes with a handful of cancer support group leaflets and an appointment the following day at the specialist hospital in Gateshead, non the wiser at what was wrong.
I was told to take as many family members as I wanted for support to this appointment. I was in shock, turning to him and commenting ‘well this doesn’t look good, does it?’. From then I started to feel scared.
Surgery
The specialist hospital were preparing us for it being a stage 3 ovarian cancer. It was recommended that I had a full hysterectomy and was told I may have to have other parts removed: lymph nodes, small bowel, depending on how ‘sticky’ the tumour was.
I asked for fertility sparing surgery, for them to remove as little as possible, with a warning if they did this in the future I may have to have further surgery depending on what the histology report came back with.
The surgery went very well, the surgeons were more confident the tumour was going to come back as borderline after seeing inside. I lost my left ovary and fallopian tube.
I remember waking up crying asking “you only took one? I’ve only lost one ovary?”. Up until now, John and I had only spoken a bit about the potential of having children. It's scary how desperate I felt for our child the closer it got to not being possible. I didn't expect to feel like that, it shocked me and I felt relieved that I'd kept one ovary.
The tumour was 20cm and it weighed 1.6kg. I'm only 50kg which put everything into perspective.
The size of the tumour had been putting pressure on my other organs which had led to some of my symptoms. The thickening of my peritoneum picked up on the scans, which they thought was the cancer spreading, was put down to inflammation due to the tumour being so big.
I spent five days in hospital, and the team at the specialist Queen Elizabeth Hospital in Gateshead were amazing. But, when I came home and saw myself in the mirror, I burst out crying at the hideous scar right down my middle. A constant reminder of what I have lost, the surgery still to come and the baby I might not get to carry.
Much-needed support
As the anxious weeks passed, I found out that the tumour was indeed stage 1 mucinous borderline. The overwhelming feeling inside me wasn’t relief…it was a great sadness, it was fear and it was compounded by a feeling of guilt that I wasn’t feeling how I thought I should be.
The recommended treatment for borderline tumours is still a full hysterectomy due to its malignancy potential and increased risk of recurrence. I currently have check-ups every three months, that will increase to six months and annually, all being well.
I felt and still feel like a sitting duck at the fear of recurrence, and I am mourning a loss. While the surgery left my right ovary to conserve my fertility, it has not been as we’d hoped and conceiving has been given 5 to 10% chance of success.
I feel like I’m riding two rollercoasters crashing straight into each other, leaving debris behind.
I desperately needed to talk to someone who had understanding. Who had either been through this, or knew what I was going through.
I found Target Ovarian Cancer’s website where I read the stories of other women’s experiences and spoke to them online in the ovarian cancer community on Facebook. Then I called the support line.
I felt like I was drowning. I was angry and feeling guilty for my feelings. In the ovarian cancer community and on the support line, I found everyone was so understanding, and so lovely. It was the comfort I needed and reassuring that I could feel however I wanted. I had to stop comparing my experience and feelings to how I thought I should be feeling.
I'm trying to process what I've gone through in such a short space of time and want others to know, it's ok to feel exactly how you're feeling and you should not feel guilty. You still had a tumour with potential removed, you’re still mourning a loss, scans are still ongoing and your feelings are still valid, it’s ok to cry every day.
Symptoms – we need to know them
As a result of the support through Target Ovarian Cancer, I feel more hopeful and I'm keen that while I focus on my future, I help women protect theirs.
If diagnosed at the earliest stage, 9 out of 10 women will survive ovarian cancer. Mine was caught early while it was still confined to the ovary, and this could be possible for more women if we improve symptoms awareness.
I didn’t know that unlike breast cancer and cervical cancer there isn’t a screening tool, and I didn’t know the symptoms. Nor did my friends.
I believe that if we know the symptoms – persistent bloating, abdominal pain, needing to wee more often and feeling full quickly, acid reflux – women might go to see their GP with their concerns.
I’d encourage concerned women to say they're worried about cancer, and if in doubt ask for a CA125 blood test – but remember this is a starter, it doesn’t necessarily mean you have cancer.
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
