A teenager was horrified to discover her missed periods were symptoms of ovarian cancer.
Amy Allen, then 18, was suspected of having polycystic ovary syndrome (PCOS), a hormonal disorder common among women of reproductive age.
But as well as not having menstruated in six months, she was developing thick facial hair – which she eventually found out was due to having two-and-a-half times the normal level of the male hormone, testosterone, in her blood.
Amy was due to start her first year of a psychology degree at York St John’s University, when, on her mother’s advice went to her GP over her worrying symptoms – leading to her shocking diagnosis.
She is very young to be diagnosed with the disease. In most cases, ovarian cancer affects women over the age of 50, or postmenopausal women.
Amy was diagnosed with a rare type called Sertoli-Leydig sex cord tumour –which produces unusual symptoms including a lower pitch of voice.
Now 21, Amy, from Berkhamsted, Hertfordshire, battled through the illness and has graduated.
Amy, from Berkhamsted, Hertfordshire, is speaking out to warn others that ovarian cancer ‘doesn’t just affect older people’
The former student hadn’t menstruated in six months and was developing thick facial hair
She said: ‘I was the first person in living memory in Yorkshire to be diagnosed with that type of ovarian tumour.
‘I went to the hospital appointment alone and hearing the words, “It’s cancer” was incredibly shocking.’
‘The scariest day of my life’
Initially, Amy, the eldest of four children, was wrongly suspected of suffering from PCOS, as her symptoms were so similar.
The condition, resulting from elevated male hormones in women, causes many small and harmless follicles to grow on the ovaries and can cause irregular or no menstrual periods and excess body and facial hair.
Her GP first told her about her excessive testosterone levels during freshers’ week at university.
Doctors first thought Amy had polycystic ovary syndrome because the symptoms are similar
Amy said: ‘The doctor from home rang me to ensure I was getting checked out, my blood test results had revealed that my testosterone levels were 2.5 times higher than they should be, and my oestrogen levels were significantly lower.’
Subsequent ultra-scan and MRI scans carried out at York Hospital in late 2014 indicated that Amy had a suspected cyst on her ovary.
Then, in March 2015, she had this biopsied, so it could be examined more closely.
‘Seven weeks had passed and I’d had my first period in a year and I thought everything was dandy,’ she added.
‘My periods had started at about 14, but after a few years they gave me very severe lower back pain and I developed bad facial hair. Then they stopped not long after I turned 18.’
Contacted about a post-biopsy appointment, Amy went alone, believing everything was fine, only to be told she had cancer.
She said: ‘The doctors and nurses were so nice. They explained everything and we had a laugh about the rarity and excitement of the type of tumour – the first one to be diagnosed in Yorkshire.
‘If I hadn’t laughed I would have cried.’
But she saved her tears until she could call her housemates, when she sobbed down the phone.
‘Getting the diagnosis was the scariest day of my life and a memory that will stay with me for a while,’ she admitted.
‘At 19 years old and coming towards the end of my first year of university, cancer was not something I thought I’d personally have to go through.’
Ultra rare in teens
Not only is ovarian cancer ultra-rare in teens, but Sertoli-Leydig tumours, described as rare sex cord stromal tumours of the ovary by the charity Target Ovarian Cancer, are particularly unusual, with characteristics including lower pitch of voice and baldness or thicker body hair.
Amy said: ‘The Sertoli and Leydig cells are in the testes of males, with Sertoli cells feeding sperm cells and Leydig cells releasing a male sex hormone.
‘These cells are also found in the ovaries, with cancer cells releasing a male sex hormone causing symptoms such as a deep voice, enlarged clitoris, facial hair, loss in breast size and stopping of menstrual periods.’
The 21-year-old says getting the diagnosis was the scariest day of her life
Thankfully, Amy did not need chemotherapy and instead had surgery to remove her ovary
Amy was told that as the cancer was confined to her ovary, she did not need chemotherapy or radiotherapy and so instead she had surgery at Leeds General Hospital in August 2015.
She decided to have her left ovary removed, but to keep the right one, meaning she could still have children in the future.
‘It took a while for the news of what was wrong with me to sink in,’ she said.
‘When it did, I realised I had some important decisions to make – decisions that had to be mine and mine alone.
‘I decided to get my ovary removed in case there was any trace of cancer left. It was the right decision, too, as there was.
‘Thankfully everything else came back clear and I’m still in remission.
‘I’m speaking out so people know that ovarian cancer doesn’t just affect older people, although it is more common in older women.
‘I was lucky, because the doctor rang me back and said this was quite serious and to get it checked out.
‘But my advice, particularly to younger people, is, ‘Don’t ignore it if you feel that something is serious and don’t allow yourself to be fobbed off.’
‘If my cancer hadn’t been discovered, I would never have been able to live life in the way I do now and to have achieved the things I’ve achieved.’
Amy was supported by and continues to fundraise for the charity Ovarian Cancer Action.