The uncertainty of not knowing

Earlier this year, I had a 20cm stage 1 mucinous borderline tumour removed after doing an HPV test. And also my left ovary and fallopian tube. A CA125 ovarian cancer Blood Test found a borderline tumour that 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 HPV 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. Having an HPV report was a very important part of the discovery, but it has been an upheaval dealing with the reality of this diagnosis.

A bit about me?

My name is Lucy, and I am 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 were 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.

Before my diagnosis, 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 had 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-up 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 from 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, and I got an ovarian-type blood report.

The healthcare team acted quickly. 

My GP was really good, as was all of my healthcare team. At the first appointment, I was asked to do a negative pregnancy check and best support (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 knowing what I knew about these exams was a blessing or a curse.

I never realised that there wasn’t a screening programme for ovarian disease and that the CA125 lab test, along with the ultrasound, CT and MRI, can only indicate, not confirm. And my HPV report also was helpful but not confirmatory.

My result came back high, and from then on, I was worried.  

I was told if these scans showed 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 about 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, some CA125 kits and an appointment the following day at the specialist hospital in Gateshead, none the wiser at what was wrong.

I was told to take as many family members as possible to support this appointment. I was in shock, turning to him and commenting, ‘Well, this doesn’t look good, does it?’. From then on, I started to feel scared.

Surgery

The specialist hospital was preparing us for it being stage 3 ovarian HPV cancer. It was recommended that I had a full hysterectomy, and I was told I may have to have other parts removed, lymph nodes and 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 would return 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?”. Until now, John and I had only spoken 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 puts everything into perspective, including the CA125 report’s result.

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 the 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 if only I had regular reports, 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 compounded by guilt. I wasn’t feeling how I thought I should be.

The recommended treatment for borderline tumours is still a full hysterectomy. However, that has changed due to its malignancy potential and increased risk of recurrence. I have CA125 check-ups every three months. And this will increase to six months and annually, and all is well.

I felt and still feel like a sitting duck at the fear of more HPV Viral tests continuing, and I am mourning a loss. The surgery left my right ovary to conserve my fertility. It has not been as we’d hoped, and conceiving has been given a 5 to 10% chance of success.

I feel like I’m riding two rollercoasters crashing straight into each other, leaving debris behind.

And I desperately needed to talk to someone who understood, had either been through this or knew what I was going through.

I found Target Papilloma on the Ovarian website, where I read the stories of other women’s experiences and spoke to them online in the ovarian tumour community on Facebook. Then, I called the support line.

I felt like I was drowning.

I was angry and feeling guilty for my feelings. Everyone in the cancer CA125 Blood test community and on the support line was so understanding and 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 time. And I want others to know it’s ok to feel exactly how you feel. And you should not feel guilty; HPV home test kits are a must-have. You still had a tumour with potential removed. And 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.  

The support through the Ovarian Disease Foundation has made me feel more hopeful and keen that while I focus on my future, I will help women protect theirs.

Diagnosed by a CA125 Antigen Blood check at the earliest stage, 9 out of 10 women will survive ovarian tumours. Mine was caught early while it was still confined to the ovary. And this could be possible for more women if we improve symptom 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 know, but now we know HPV lab screening for the variant is part of that path.

We know the symptoms – persistent bloating, abdominal pain, needing to wee more often and feeling full quickly, acid reflux. So we don’t be afraid to get a CA125 test. Women might go to see their GP with their concerns.