Cervical cancer: Aoife's story

Aoife P. Rafter was diagnosed with cervical cancer aged 27, when she was already working hard to manage her cystic fibrosis, a serious health condition that causes persistent lung infections

by Aoife P. Rafter | 2nd Sep 2020

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We all have such individual experiences to share when it comes to telling our cancer stories. Mine was a little on the melodramatic side, to say the least.

After years of planning and ensuring my health was at its best with my lung disease, cystic fibrosis, I finally gained the courage to travel around Australia with my boyfriend at the time. We celebrated my 25th birthday on Bondi Beach and after a few months of backpacking and temp work, we eventually found a beautiful studio apartment in Bondi to call home.

I was completely in love with Bondi and the healthy active lifestyle it had to offer me. It was perfect therapy for my chronic lung disease and my mental health too.

But in May 2019, one month into my dream job in healthcare recruitment, things took a rapid downward spiral. I began to get seriously unwell with my cystic fibrosis, but I was also experiencing discharge, sporadic bleeding and pain throughout the day and also during and after intercourse.

In between being hospitalised in Sydney for a serious cystic fibrosis bug I had contracted, I attended an unscheduled smear test. I dealt with an ever-so professional and warm GP who I had never met before. I listed all of my symptoms to her, including the daily pelvic pain that I had assumed was a side effect from one of my many medications. I also informed her that I’d had a smear test before I left Ireland for my travels, so I wasn't actually due another yet.

She explained to me that this smear test could also detect for HPV, something that Ireland's smear tests couldn’t do yet.

I will never forget the change in that doctor's demeanour while she was doing the test. She said she saw a lot of blood and inflammation and possibly a polyp (a small growth). It was hard for her to distinguish if she could see the polyp or not due to its location, so she said that I may need a biopsy depending on my smear results.

She phoned me within a few days with the results: No abnormal cells, but positive for HPV Type 18.

I became very frightened. I didn't know a lot about HPV. I’d never had the vaccine as it had not been brought out in school until after I left. I also had taken oral steroids for more than 10 years which lowered my immune system. This meant I could have had HPV for a very long time and my body may not have been strong enough to eradicate it.

I attended for my biopsy in Sydney a few days later. It was awfully painful and I couldn't wait for it to be over. The doctor was very thorough and took two samples. As I had decided that I needed to return home to Ireland to be hospitalised for my cystic fibrosis care, the gynaecologist kindly processed my results as quickly as she could.

I arrived home on 24th June 2019 and was due to be admitted to my cystic fibrosis ward in Dublin the following day. I briefly reunited with my family and friends at home.

The next morning as I packed my bag for my scheduled hospital admission, I checked my emails. I read the biopsy results from my doctor in Sydney – they concluded that I had a cancerous tumour quite high up in my cervical canal.

At 27 years old, I had cystic fibrosis and now cervical cancer. My heart broke that day forever.

Over the following weeks I learned that my cancer was at a 1b1 stage. This meant that I needed a radical hysterectomy, removing everything apart from my ovaries. As I am so young and have no children, I was lucky enough to freeze some of my eggs before my surgery.

I had my radical hysterectomy in August. The recovery was so slow, but it happened nonetheless. My surgery went well, the entire 3.2cm tumour was removed and lots of the surrounding margins also. I was looking at an approximate 20% chance of recurrence. My teams advised that I go through 25 sessions of precautionary radiotherapy over Christmas in order to reduce this risk to 10%.

It has now been one year since my surgery. I'm 28 years old, cocooning (what we call shielding in Ireland) due to COVID 19 and enduring the menopause as a side effect of my radiotherapy.

I know that my story isn't over. I'm continuously learning about myself, for the harder the battle the bigger the lesson.

I find great solace in sharing my story online via my Instagram account, @aoife.p.r where I have made so many invaluable connections with other brave women with similar stories to mine.

If I could share any crucial advice that I have learned over the past 14 months it would be to listen to your body. Don't ignore symptoms or aches and pains. Your body is a fantastic thing, it literally tells you what's wrong with it, all you have to do is listen.

Wellbeing of Women invests in research into finding new ways of diagnosing, preventing and treating cervical cancer, such as the HPV schools vaccination programme introduced in 2008 which wouldn't exist without our work. Donate here.

Find out more about cervical cancer symptoms, diagnosis and treatment here.