Vicky Phelan never set out to be a national campaigner. When she was first diagnosed with cervical cancer in July 2014, her only concerns were for her two young children, Amelia and Darragh, and her recovery.She underwent aggressive treatment - radiation, chemotherapy and brachytherapy - and was eventually given the all-clear.In September 2017, during a routine checkup, she was told by her gynaecologist that an audit carried out by CervicalCheck found her 2011 smear test had been reported as a false negative.Weeks later, a CT scan revealed the cancer had returned. This time the diagnosis was terminal.Left alone with her patient file, she flipped it open and quickly realised something was wrong relating to her smear history and CervicalCheck. She decided to contact a lawyer. Within months she was outside the Four Courts making an explosive statement to awaiting journalists. A political and medical crisis ensued.Here, in an exclusive extract from her memoir, Overcoming, she recalls the devastation of finding out she had cervical cancer for the second time with little hope of surviving beyond 12 months.
It was September 2017. I sat in the waiting room, waiting to be called to see the consultant. I was there for a routine check-up. I had one every three months to keep an eye on things.
I had been there for over an hour. Every time the nurse appeared with her clipboard, I looked up, thinking I would be next. People who had arrived after me went into their appointments and left.
Still I waited. I started to wonder if something was wrong. Why was the gynaecologist holding me back? I worried it meant he had bad news for me.
“Vicky Phelan,” the nurse called from the door. I followed her into the room; I was feeling nervous. The gynaecologist stood up to greet me and shook my hand.
I lay on the table and tried to settle myself. He did the usual internal exam. It was uncomfortable, but I was getting used to them. Everything seemed okay.
We had a discussion about how I was feeling generally and if I was experiencing any symptoms. I told him I was still experiencing lower back pain, which I had been feeling for some time. “Okay, I’m going to send you for a CT scan,” he said, “just for completeness.” I hadn’t had a scan in a long time. I felt anxious at the idea of having one again.
The appointment seemed to be drawing to a close, when he cleared his throat and said, ‘There’s one more thing I need to discuss with you …’ He told me that the CervicalCheck screening programme had been in touch. They had carried out an audit on smears of women who had been diagnosed with cervical cancer.
My smear test, taken in 2011, had been reported as normal. On audit by CervicalCheck, however, this was felt to be an incorrect result and the audit suggested that the result of my smear was in fact in keeping with ‘squamous cell carcinoma’.
There was a silence in the room as I tried to take in what he was saying. “What are you trying to tell me?” I asked, “that I’ve had cancer since 2011?”
My heart rate started to quicken as I totted up the years in my head. Having cancer for six years was a very different diagnosis. He said that this was obviously a very different result from the original and that it may have impacted on my overall treatment.
He then went into detail about the limitations of screening and percentages around false negatives. I stopped him.
“If I had cancer back in 2011, what kind of treatment would I have been looking at?” I asked him.
He told me I would have been looking at a hysterectomy instead of the chemo-radiation that I was treated with. I was motionless for a moment, trying to absorb what was being said.
We discussed the fact that I had a three-month-old baby at the time of my smear in 2011 and I wondered how I would have felt about having a hysterectomy so soon after having a baby. Would I have coped? And then a question suddenly came to me.
“Are there other women in this situation?”
“‘Yes,” he told me. I was speechless. I needed to pull back. It was too much to absorb.
“I really don’t have the headspace for this at the moment,” I told him.
And with that, I left the room. I don’t know what I’m going to do about this, I thought to myself. I was in shock. Is he telling me that I have had cancer for six years, rather than four? I decided I needed to put it to rest, for the moment. There was too much going on.
Amelia was the priority. I was also applying for a job promotion. The interview was coming up and we really needed the money to pay for Amelia’s medical bills.
I couldn’t take the time to process what he was saying. I needed to concentrate on what was important; I needed to focus on Amelia. But I would come back to it. I promised myself that. This wasn’t the end of the conversation.
A few weeks later, in mid-November, I went for the CT scan. I felt like I was being photocopied. I dreaded to think what might be going on beneath the surface of my skin.
Was the cancer back? What could they see? Had it been in my system for longer than I knew? It was all I could think about. It would be a few days before I’d know for sure. I was given an appointment to see my gynaecologist for the results, and before I knew it, I was back in his office.
This time there was no waiting around. He brought me straight in and said that, unfortunately, it was not good news. He explained that I had a large tumour, almost 10 centimetres, which was made up of five tumours on my para-aortic lymph nodes.
They formed a 10-centimetre mass encircling my aorta. Tumours — the word sent a shiver down my spine. How could it be? I had no symptoms other than lower back pain. I was not bleeding and I felt relatively good.
I was tired, but I’d had a stressful year with Amelia’s illness. I didn’t feel like I had cancer. I was sitting there trying to understand what this meant. The next bit, I did understand: he told me there was nothing he could do for me — no surgical options — so he was sending me back to my radiation oncologist, to see what oncology could do.
Back. That’s the word I heard most. Oncology. Back. Words I never wanted to hear again. In the meantime, I’d be sent for a PET scan to get a clearer picture. A PET scan is a more detailed scan which shows up any smaller tumours, if there are any. More tumours. The thought terrified me.
It was 29 December, one of those quiet days between Christmas and New Year, when I saw the hospital number appear on my phone. I immediately felt anxious. The call was brief. The oncologist wanted me to come in on 12 January. I asked if they had any news about the PET scan. She said she’d prefer to discuss it in person, that we could talk about treatment options then.
I went to the oncology appointment, 12 January 2018 — a date engraved in my memory, forever. Mam came with me, and Amelia.
“Vicky Phelan, the doctor will see you now”. I left Mam and Amelia in the waiting room. “Won’t be long,” I said, smiling towards Amelia. I took a seat in the consultant’s room. I remember it was cold.
The doctor got straight to it. She told me it was not good news. She talked me through how the cancer had spread, with the aid of a diagram. I was trying to take it all in. But there was one question in my mind — could this be cured?
I asked the doctor to tell me if I stood a chance. I could feel the weight of that question hanging in the air.
And then the answer: she told me that unfortunately, the cancer looked to be terminal. I asked her what kind of a timeframe I was looking at. I had to push her for a reply. I needed to know. With chemotherapy, I may have a year, at most.
Without it, maybe six months. I was shocked. I tried to take it in. “Surely there’s something I can do?” I pleaded.
Radiotherapy was not an option because of the position of my tumours, which were close to all my vital organs. The only option available to me was to have more chemotherapy — palliative chemotherapy. I couldn’t believe what I was hearing.
She was referring me to a medical oncologist who would discuss the chemotherapy plan with me. I asked about alternative treatments.
There were no options, it seemed.
What did this mean? I tried to make sense of it in my own mind. I was imagining the worst possible scenario: I had to go home, say goodbye to my children, and get my affairs in order.
I was furious. I had done everything they had asked me to do — I’d been to every gruelling treatment, and now, here I was three years later with terminal cancer.
I stared at her. I looked straight into her eyes, woman to woman. She looked down at the papers on her desk.
With that I got up and left the room. The moment I heard the door close behind me, I put my hand out to steady myself against the wall. My legs were shaking. My head felt light.
There was a bathroom just to the left of the surgery, away from the waiting room. I stumbled in, and locked the door behind me. There was a sign on the wall that read, ‘Call, Don’t Fall’. And what did I do? I fell apart.
I wept until there was nothing left in me. Everything was going through my head, and nothing.
Eventually, when I had no more tears to shed, I splashed my face with water and tried to gather myself. I couldn’t let Amelia see me like this. I tried as hard as I could to seem normal. I put on my best face and went back to the reception area. But the moment Mam saw me, she knew. Mammies always know.
She looked at me, over Amelia’s head. “Everything alright?” she asked.
I shook my head.
When I woke the next morning the dawn was just breaking. The light coming through the window had new meaning for me now. My days were numbered. How many more mornings would I experience?
I made a decision there and then that I would do anything I could to stay alive. Even if it took every last bit of me. I knew if I went back on chemo, I wouldn’t be able to handle it.
There had to be another way. At my next appointment, I insisted on a biopsy. I wanted to know exactly what I was dealing with, so that I could make the right decision for me. I was tired of blindly following their ‘treatment’ plans.
My appointment for the biopsy was one week later, 19 January. Mam insisted on coming with me. I was glad she was there. We arrived in the hospital for 8.30 in the morning and checked in at admissions.
“Take a seat,” said the woman behind the desk. Once I had been admitted, we were sent up to a ward. There was a shortage of beds, so they directed me to a treatment room to wait until a bed became available.
Hours went by, as we sat there, waiting for my name to be called. The nurse came and asked me to step on to the weighing scales. She scribbled some notes on my file and placed it on the desk beside me. When she left the room I looked over at the file.
I wondered what was inside it. Thoughts of the conversation with my gynaecologist were going through my mind. I needed to know if there was anything about the audit in my file.
Now that I knew my cancer was back, I wanted to know more about what had happened. Once I started treatment again, I wouldn’t have the energy to do anything about it. I picked up the file and started skimming through the pages, all the records of the various medications and scans. And then something caught my eye.
The hairs on the back of my neck stood up. It was a report that seemed to be about the audit. Mam knew straight away by my expression.
“What’s wrong?” she said. “Something’s not right here.”
I noticed at the very bottom of the page, in tiny print it said ‘page 2 of 2’.
“There’s a page missing,” I said.
“What are you talking about? It’s probably just a cover page,” said Mam.
I knew something wasn’t right. I took out my phone and started taking photos of the document and anything else on my file relating to my smear history and CervicalCheck.
The nurse was coming back. I quickly put the file back on the table. It was time to go for the biopsy. The nurse asked me if I was ready.
A bit rattled, I said, “Yes,” and she led the way. Walking through the hospital, I felt a sense of unease, like I couldn’t trust the system.
I kept replaying the conversation about the audit. What had they known that they hadn’t told me?