"They removed a football-sized tumour and detached it from my bladder and bowel"

Gillian Luis-Ravelo was diagnosed with ovarian cancer in 2007. She has a BRCA gene mutation and is currently weighing up her options for preventative surgery and considering what the future holds for her daughter.

“My story begins in 1965 when my paternal grandmother was diagnosed with breast cancer and secondary ‘stomach cancer’, which we think was probably ovarian cancer.

My maternal grandmother was diagnosed with breast cancer in the 1980s. Then my Mum was diagnosed with breast cancer in 1996 (aged 55), returning in the other breast two years later.

She started to get ascites, and the doctors reduced their prognosis to months. She went downhill rapidly, passing away in June 1999.

The following June, aged 38, I was diagnosed as a grade one hormone-receptor-negative medullary cancer. I had a wide local excision, several lymph nodes removed, and five weeks of radiotherapy. I asked if I could have a genetic test but was refused, because my relatives were post-menopausal on diagnosis.

In March 2007 I began to experience a bloated feeling under my rib cage after meals. Thinking it was a symptom of the menopause I went to see my GP. Fortunately she referred me for an ultra-sound and a blood test, including CA125.

Knowing what I know now about the symptoms of ovarian cancer, I had also experienced fatigue, needing to wee more, some abdominal and back pain, a change in bowel habits, and a bit of rectal bleeding – but not at the same time and most things I could relate to menopausal symptoms. 

The ultrasound result showed a solid mass one side and empty mass the other and I was referred to a gynaecologist at our local District General Hospital.

He arranged a CT scan, which ‘showed something growing on one of your ovaries’, possibly a fibroid.

He also said my CA125 was quite high, but that could be attributed to other conditions, and he would repeat it.

I didn’t understand the ranges and he didn’t elaborate. Subsequently I found out that both tests were just under 800 – the normal range is under 40! 

I asked him outright if it could be cancer and he said he didn’t think so, but I would need an operation in any case.

My case had gone past his area of expertise and he referred me to the consultant at the Royal Sussex County Hospital, Brighton.

The Nurse Specialist gave me a Sussex Cancer Care leaflet and I asked again if it could be cancer to which I was told “we won’t know what it is until you have the operation.”

At my first appointment with the consultant he told me I had advanced ovarian cancer. He said I had a large tumour that had attached itself to my bladder and bowel and I may need a colostomy, but they thought it was contained within my abdomen.

I would eventually need a full hysterectomy but I could go on a trial, where the computer decides at random whether I had the operation or chemo first.

Normally, I’m happy to take part in trials, but on this occasion I made my own decision and opted for the operation first.

In June 2007 they removed the football-sized tumour and detached it from my bladder and bowel.

They removed all the tumours over 2cm, leaving the rest as I lost a lot of blood and needed a transfusion, and told me that the chemo should deal with them. 

I had an aggressive type of ovarian cancer, which was stage 3, grade C, and began chemo in July – five sessions every three weeks with taxol and carbo-platin.

I had a bad week after each session but I was back playing tennis during the week before my next session was due.

In 2008, I again asked for a genetic test. This time my request was granted and a nurse specialist from Guy's came to see my Dad and I and took our blood.

After approximately six months, the results came back that both my Dad and I had a BRCA1 gene mutation. I was surprised that it had come down through my Dad’s side of the family – I assumed it was from Mum’s side.

I was told that my daughter (now 21) could have the test from the age of 18, but would be monitored from the age of 30.

We were invited to Guy's to meet a team of experts – surgeons, oncologists, psychologists, nurse specialists. The day was amazing, we were allocated our own room where the specialists came to see us and we asked all our questions – we now have an open invitation to visit or contact them again.

When I was discharged after five years my oncologist told me the ovarian cancer was highly unlikely to return. However I have an increased risk of breast cancer due to the BRCA 1 gene mutation and my age (55 this year).

I have been discussing a preventative bilateral mastectomy with my breast oncologist for the past four years. My dilemma is that I feel very well at the moment and, as it took me a long time to recover from the operation and treatment for ovarian cancer, I’m in no hurry to have another major operation.

However, my philosophy is prevention rather than cure. I know I need the surgery, but I feel I have another five years before I will think seriously about it.

My daughter has not had the genetic test yet. She and I speak often about when she should have it, but this decision has so many implications.”

Are you worried about your family history and whether it puts you at risk of ovarian cancer? Visit our BRCA hub for information and support or email Jo@ovarian.org.uk