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Amanda Cawthorn: "My CA125 blood tests were still normal"

05 April 2017

Amanda Cawthorne Your Stories

Amanda was diagnosed with ovarian cancer aged 42 but didn’t have the normal symptoms. It was a persistent cough that kept taking her back to her GP.

"With hindsight I had had some of the classic symptoms but I assumed they were down to something else. It was very hot and I was drinking more, so it wasn’t surprising I needed to go to the loo more often.

I was very tired but I’m always tired when I’m hot. My bowels were a bit funny but I’d just started a diet so I thought maybe I wasn’t getting enough fibre.

Ovarian cancer didn’t even occur to me as a possibility but that cough wouldn’t go away.

At first my GP thought it might be asthma, then I got prescribed medication for nasal drip but no change. The next theory was that it was caused by acid reflux but I reacted so badly to the drugs I was given that I needed to see the out of hours GP.

He felt my tummy and said it was distended so the following Monday my regular doctor sent me for an ultrasound, which picked up a large cyst.

I had an appointment to go back to hospital in a week’s time to see the consultant radiologist and in the meantime I had a CA125 test, which came back normal.

The consultant thought it was just a large cyst so there was no urgency, especially as my CA125 blood test was ok. But when I had an MRI two weeks later the cyst had grown so much I was referred to the gynae-oncologist.

I started to go downhill very quickly. I needed surgery but I couldn’t have the operation as I was ill with a very bad infection. I was sent home with antibiotics but a week later I was still too ill for surgery. By now the mass was pressing on the main artery coming out of my leg.

"My CA125 blood tests were still normal and nobody at that time thought it was anything other than an abnormally large cyst"

Amanda Cawthorn

Eventually I had a firm date for the operation. The cyst was now 26cm across and had grown 10cm in the last month alone.

My doctors weren’t sure I could tolerate surgery so as I walked down to theatre I was saying my goodbyes. Whilst waiting I had developed a blood clot on my lung and a fluid pocket around my heart.

The cyst ruptured during surgery. A sample was sent to pathology and the results showed I had clear cell ovarian cancer, which was eventually categorised as stage 2B.

It had spread to the fallopian tube but was still contained within the pelvic area. The surgeon removed some lymph nodes too but thankfully they were cancer-free.

I was on the high dependency unit for several days and then I was allowed home. A month later I started six rounds of carboplatin and taxol.

During my treatment I stayed away from Google as much as possible and kept to trusted sources of information like the Ovarian Cancer Action website and other cancer charities.

We’d been approved for adoption the week before I’d been diagnosed but that had to be put on hold. In some ways it made the treatment easier to deal with as I’d already had to come to terms with not being able to give birth.

We won’t be allowed to adopt until I’ve been in remission for 5 years but by that time I’ll be in my late 40s and I’m not sure if I’ll still want to go through the whole adoption process by then.

I’m now cancer-free but still living with all the challenges that treatment brings with it. I had to have a medically-induced menopause and I’m not able to have HRT to alleviate the symptoms.

I have lymphoedema in both legs and a massive hernia, which can’t be repaired because of where it is. And I’m living with a constant ‘what if?’ hanging over me – every ache and pain you wonder if it’s come back.

However I am trying to turn a negative into a positive by helping raise awareness of ovarian cancer."

Amanda is an Ovarian Cancer Action Voice. Find out how you can join her and help raise awareness of ovarian cancer.