For the past 5 years, I have been working for Cancer52, a charity providing a “common voice for rare and less common cancers”. I have always been passionate about the work of Cancer52, but in 2016, it became even more meaningful to me as I was diagnosed with my very own “less common cancer”, ovarian cancer.
In March 2016, I had been experiencing lower abdominal discomfort for about 3 to 4 weeks – a bit like mild menstrual pain – which I initially put down to the exercise I was doing. It wasn’t bad or unbearable pain, but it was constant and I knew it wasn’t right.
My work with Cancer52 gives me exposure to and increased awareness of the many symptoms of rare and less common cancers, which are often overlooked as less serious conditions – indeed mine were originally diagnosed as irritable bowel syndrome.
So, I was aware that tummy pain is a key symptom of ovarian cancer, as well as the unusual spotting I had. I also knew that if it was cancer, early diagnosis is key to increased chances of survival. I went to my GP as follow up, thinking it was probably nothing but always having ovarian cancer at the back of my mind. It was definitely worst-case scenario, as I was convinced I would be feeling worse if it was cancer.
My GP referred me immediately to a gynaecologist, who diagnosed me with IBS. She could have left it there but fortunately she also took a series of blood tests. A couple of weeks later, I received a call to inform me that one of my bloods was slightly raised. When I enquired which, I was told my CA125 was 75. This meant nothing to me so I immediately Googled it and my heart dropped when I discovered that it was a marker for ovarian cancer and anything higher than 35 was possibly cause for concern.
CT and MRI scans took place in the months that followed, neither of which showed anything, except a cyst on my left ovary. So, for completeness, my CA125 was tested again and this time, returned even higher at 275. At that point, the MDT requested the MRI images, which after scrutiny, provided a diagnosis of a borderline ovarian cyst with just 10% chance of malignancy. Despite the fact they were pretty good odds, the recommendation was for cancer surgery – this was the first time the C word had been mentioned.
In June 2016, just 3 months from visiting the GP, I went under the knife for a radical abdominal hysterectomy and bilateral salpingo oophorectomy. That evening, whilst woozy from the anaesthetic and high on morphine, the surgeon spoke to me and delivered the news that during the op, he had found “disease” in both ovaries, tubes and womb.
None of that had shown up on my scans…
The biopsy revealed cancer in 5 of the lymph nodes and in July 2016, I was formally diagnosed with Stage 3 High Grade Serous Ovarian Cancer. This was despite my awareness of the symptoms, going to the doctor straight away and it being followed up seriously. I was just glad I hadn’t left it any longer.
In August 2016, I embarked on a chemotherapy programme of weekly Paclitaxol and 3-weekly Carboplatin, spanning 18 weeks, to blast anything microscopic that remained. During this time, I put work on hold to concentrate on getting better.
In December 2016, I was declared No Evidence of Disease (NED) but the euphoria was short-lived, as a follow-up scan in March 2017, revealed more cancer cells and I embarked on a second round of chemotherapy, over a four month period. Once again, I was declared NED but continued with 3-weekly maintenance therapy, until recently when I changed to hormone therapy to see how I respond to that.
Since my diagnosis, I also have been found to have the BRCA1 gene mutation, which not only is the most likely cause of my ovarian cancer but also puts me at 50% lifetime risk of breast cancer.
It sounds weird but despite having cancer, I feel so fortunate I was aware of symptoms and I didn’t leave it any longer to investigate them, and that my diagnosis was quick and acted upon. I know from my work in the cancer world that there are many other people who are not so fortunate.
At no point during my journey have I felt upset, angry or a sense of unfairness at my situation, as I know the statistics – 1 in 2 people will be diagnosed with cancer and 47% of those incidences will be from a rare or less common cancer. Unfortunately, I also know the mortality stats – over half – 54% – of all cancer deaths in the UK are from rare and less common cancers.
Since my diagnosis, working for Cancer52 has taken on new meaning and I am more committed than ever to raise awareness of rare and less common cancers.
To find out more about the work of Cancer52, please visit their website www.cancer52.org.uk