'I didn't realise smears don't pick up everything, it was only when my tumour got bigger that it started to show up in tests'
Cathy Robinson (43) is a dentist and lives in Portadown with her 15-year-old daughter Lucy and partner Rhyan (44). She talks to Lisa Smyth about being diagnosed with two types of cancer and why she's campaigning to raise awareness of HPV
Cathy Robinson isn't the type of person to worry about things unnecessarily. This is particularly the case when it comes to her health - after all, she has always taken every sensible precaution to look after her body and make sure any potential problems are picked up as early as possible.
To this end, she has never missed a smear test and checking her breasts for lumps is something she does on a regular basis.
So, she could be forgiven for thinking she was doing everything she could to take care of herself.
And yet, three years ago, Cathy was told she had cervical cancer and subsequently found out it is likely the disease had been growing inside her for seven years prior to her diagnosis.
Worse still, it took two years of doctor appointments and tests before the full devastating reality of her condition was uncovered.
It all started in 2013 when Cathy had a severely abnormal smear result.
At this stage, she was told she also had a high-risk form of the human papillomavirus (HPV), which causes a number of different cancers, including cervical cancer.
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"I didn't know the significance of HPV at that time, I'd never heard of it," she says.
Cathy was invited for a LLETZ procedure, a routine surgery done while the patient is awake to remove abnormal cells.
"I had good results but when I had a follow-up smear six months later in August 2014, there were abnormal cells again so I was told I needed another LLETZ and it would probably be in the next six weeks," she says.
"It got to Halloween and I still hadn't heard anything so I gave them a call and I was told I would be seen in the next clinic.
"Christmas came and I still hadn't heard anything so I rang again and they couldn't find me on the system, so I decided to use my private health insurance.
"I was loath to actually go private for something so straightforward and available on the NHS, but it was over a year from my first smear and my mum said to me to go and get it nipped in the bud."
Cathy saw a consultant at a private clinic at the beginning of 2015 and after an examination, he told her there was nothing unusual.
The smear he did was also clear, so she waited another six months for her next review.
However, in the interim, she began to experience irregular bleeding.
"I suppose I was also feeling tired, but it happened so slowly that I didn't really notice it," she explains.
"I also had bloating and it was really severe, but again, it was insidious and came on so gradually that I just thought it was me."
Cathy finally got closer to the truth about her condition when her consultant decided to do an ultrasound.
She adds: "When I went for the scan, well, you didn't need a medical degree to see it, there was a 7cm mass there and even I could see it."
Cathy was reassured by the doctor that it was probably fibroids and he recommended a procedure to have them removed.
"He asked me if I could stay that evening and I told him I couldn't because I had a clinic and patients the next day," she says.
"He then told me to come in on Saturday morning and he would put me on his emergency list.
"I just thought it was a really great service."
However, Cathy's world was turned upside down just days after celebrating her 40th birthday when she returned for the results of the procedure.
"I wasn't even going to go along to the appointment that evening," she admits.
"I'd had my birthday party that weekend and I was tired, and I remember thinking I couldn't be bothered driving down to Belfast for the appointment, but I ended up going and I was one of the last ones to be seen.
"There was a nurse in the room when I went in and I didn't realise the significance at the time, and the doctor said, 'I'm afraid I have some bad results for you'.
"He told me I had cervical cancer and you could have knocked me down, I was absolutely shocked.
"He said it was the most unusual presentation he had ever seen and he would bring me back and we would go through how I had ended up in this position, but first he wanted to get me better.
"I just couldn't understand how I could have ended up like this."
Cathy was told she would need to have a radical hysterectomy, followed by chemotherapy and radiotherapy.
She was also faced with the task of breaking the news to her parents and Lucy, who was just 11 years old at the time.
"I had no idea that I was going to be told I had cancer, so I'd gone up to the appointment on my own," she adds.
"I was in no fit state to drive back to Portadown, so I rang my mum and dad.
"My mum didn't answer but my dad picked up and I just said to him, 'you'll never believe this, I have cancer'.
"I'll never forget the crack in his voice, it just broke him and he told me how sorry he was.
"I had to phone my boss and basically said I wouldn't be in the next day because I had cancer and I didn't know what was happening.
"That was the start of a year off work.
"Lucy had just gone from primary school to secondary school, so she had a lot going on and I didn't want to add to that.
"I didn't really tell her the full truth of what was going on, I said there was something the doctors needed to remove and I had to have surgery.
"I'm quite good at compartmentalising things and I've always believed that there's no point worrying about things that you can't change.
"I like to deal with facts, I don't worry about what could be, but then unfortunately they discovered the cancer had spread to my lymph nodes."
It was at this stage that Cathy's pragmatic approach to her illness turned to anger.
"I kept thinking that if it had been picked up two years earlier it wouldn't have gone into my lymph nodes," she says.
Desperate for answers, Cathy asked for her case to be reviewed and was shocked to discover the cancer was probably present for seven years prior to her diagnosis.
However, the reason why it wasn't picked up during smear tests was because it was located on the inside of her cervix.
"I was just very, very unlucky, I was told my tumour developed on the dark side of the moon," she said.
"I didn't realise before then that smears don't pick up everything, it was only when my tumour got bigger that it started to show up in smears.
"Basically I was misdiagnosed but it wasn't anyone's fault.
"Finding that out has actually helped me because I had blamed taking so long to be diagnosed on having to have a radical hysterectomy and not being able to have any more kids.
"Now I know that the two years probably didn't make much of a difference."
Cathy finally finished her treatment and began to rebuild her life - but she was dealt a further cruel blow at the start of this year when she was diagnosed with breast cancer which was completely unrelated to her cervical cancer.
"The first thing I thought was how was I going to tell my parents, I couldn't put them through it again," she says.
"I knew Lucy would be okay because she believes in me and I knew I could get through it because I had done it already and this time I had Rhyan there which has made a massive difference, but I was worried about the impact on my parents."
Cathy took the radical decision to have a double mastectomy to reduce the risk of developing cancer a third time, and just last week she finished her last course of chemotherapy.
Throughout her treatment, she has been developing a campaign to raise awareness of the dangers of HPV and has just launched her HPV & Me Facebook page, aimed at dispelling the myths around the virus and screening for cervical cancer.
She is also calling for more research to improve the HPV vaccination programme, as well as making the current HPV vaccination available to as many young people as possible.
"The vaccination isn't effective against the type of HPV virus that I have, so we need more work done to create a vaccination that targets more of the high-risk virus," she says.
"In addition, they are going to start vaccinating boys between 12 and 13, but what about the boys over 13 who aren't yet sexually active?
"I would also like there to be better education about the dangers of HPV and how to stop its spread, I always thought I was taking every precaution with my sexual health.
"You could call this my own personal vendetta against HPV - it might have got me but I'm not going to let it get everyone else. There's definitely an element of taking a bad situation and making something positive out of it."
Cathy adds: "I have the virus, but I know the dangers of it now and I make sure I get myself checked out regularly, I just want to give other people the same chance."
What is HPV?
The human papillomavirus (HPV) is a type of virus that infects the skin and cells lining the inside of the body.
For most people, the infection will get better on its own and they will never know they had it.
HPV spreads through close skin-to-skin contact, usually during sexual activity including oral sex. Around eight out of 10 people will be infected with the virus at some point in their lives.
Most of the time, the virus does not cause cancer.
This is because it is killed off by the body’s immune system, but not always. Some infections persist and lead to cancer or genital warts.
One of the most famous people to develop cancer as a result of HPV is actor Michael Douglas (below), who was diagnosed with throat cancer in August 2010.
Cervical cancer is the main type of cancer linked to HPV infection, while most vaginal, vulval, penile and anal cancers are also caused by HPV.
HPV infection also increases the risk of some types of mouth and throat cancers.
In Northern Ireland, all girls between the ages of 12 and 13 are already offered vaccination against the high-risk types of HPV that cause 70% of cervical cancer cases and 90% of genital warts cases.
The vaccination programme is to be rolled out with the vaccination also being offered to 12 and 13-year-old boys from next month.