Amy Carswell was diagnosed with cancer in 2022 after noticing subtle changes in her left breast. “I noticed a change in the texture of the breast, just above the nipple,” she says. “It wasn’t a lump, just a difference in how it felt. I kept an eye on it for a few weeks and when it didn’t go away, I went to see my GP. Things moved quickly from there and a few days later, I was sent in for a triple assessment at St Vincent’s hospital.
“Although it was painful when they carried out the mammogram and some discharge came out, they said it was probably a cyst as they couldn’t find anything which concerned them – so that was a huge relief.”
However, despite the good news, by January 2022, the mother of two still “felt that something wasn’t right”, as the unusual texture was still present, she had slight discomfort and was experiencing some discharge, so she went back to see her GP who sent her for further tests. “She was fantastic and immediately arranged for another referral to the breast clinic,” she says.
“I was seen pretty quickly, by mid-February, and the consultant who carried out the exam said he thought it was just hormonal due to my age, and as I had had a mammogram only six months previously, did not require another one. So, I was referred for an ultrasound and told to come back to the clinic in three months’ time.
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“Unfortunately, the appointment for my ultrasound was set for a week after my return appointment to the clinic in April, so I asked to be placed on a cancellation list and thankfully I got an earlier appointment on March 2nd – and seemingly because the radiologist identified something in the referral, she changed the request from an ultrasound to another mammogram – which led to an ultrasound-guided biopsy, and then to a mammogram-guided biopsy.
“In the midst of this the whole family got Covid for the first time, so when I went to receive my results on Wednesday, March 16th, 2022, I was on my own and was met by the consultant breast surgeon, Mr Geraghty, and his wonderful breast care nurse, Gillian, and I received my diagnosis of ductal carcinoma in situ (DCIS).”
The 47-year-old, who is the director of the Cardiovascular Research Institute Dublin at the Mater Private Network and has spent more than 20 years working in the Irish health sector, said she felt relief when she heard the word cancer as she “finally knew what was going on” and was glad that something was going to be done about it.
“I had suspected that it was cancer and now I finally knew what was going on,” she says. “My first question was why this had not been picked up during the mammogram the previous August. And they were very clear, that the type of cancer that I had created tiny calcium deposits or nodules scattered throughout my breast, which were so small that when I had the first mammogram in August 2021 they were not detected.
“I know it’s not the same for everyone, but because of my years of working in the health sector and more recently in health research, it gave me the confidence to trust my own instincts and to go back again to my GP in January and ask for that re-referral. I think it is so important for all women, medical background or not, to carry on asking for help if changes in your body don’t feel right. Thankfully, I did. So, my biggest message to others is to trust your instincts; if something feels off, don’t stop asking questions.”
At first, Amy, who lives in Wicklow with her husband and children, was told she would “only need a mastectomy”, but after more scans it was discovered the cancer had spread to her lymph nodes and was HER2+ positive, meaning it was hormonal and aggressive.
That, she says, changed everything.
“I started chemotherapy in April 2022 and had six cycles of a combination of chemotherapy and hormone drugs – it was not easy. I lost two stone in the first two months as it was like experiencing very severe morning sickness, so I couldn’t eat. I had many side effects, from sickness to sensory issues and, halfway through, they had to reduce my dosage because of how sick I was.
“But I received amazing support from the psych-oncology team in St Vincent’s public and had three weekly appointments with one of the clinical psychologists. This was so important in getting me through the treatment. But breaking the news to my children, who were just 10 and 12 at the time, was one of the hardest parts. I chose to be open with them from the start as I wanted them to know what was happening, just like my parents had done for me (when they had cancer) I wanted to be able to answer their questions and to reassure them that although it was going to be very difficult, I was going to be okay.
“It definitely took a toll on my mental and physical health, but I was incredibly lucky to have my husband, children, family, friends and community to rally around me. They got me through it.”
Her treatment ended in August 2022, followed by a mastectomy with reconstruction – and after hormone treatment was completed, she returned to work in April, 2023, and is doing well, despite some unwelcome side effects. “While I recovered well from the chemo and the surgery, I have experienced two long-term impacts from the cancer treatment.
“The first was that, within a couple of weeks of starting chemo, menopause hit me like a train. It was intense, with hot flushes, higher levels of anxiety and joint pain. Because my menopause was induced early as a result of the chemo drugs, the symptoms were more severe. However, I was very incredibly lucky to participate in the ARC pilot programme for women who have cancer and menopause in January 2023 and received lots of fantastic advice on how to manage menopause without HRT. It also resulted in meeting the most amazing group of women, who I am still in contact with to this day. We provide each other with much needed support and understanding.
“The second issue is that when I met with the radiation oncologist, before the radiation began, he had warned me that for a small number of women the radiation can damage the tissue and skin around the implant. Unfortunately, this happened in my case and the tissue has contracted. So I had follow-up surgery in February this year to address this, which consisted of grafting fat from my stomach to my breast area – a silver lining.
“Financially, the cancer has had a long-term impact too, but I was lucky to receive fantastic support from my employer, the Mater Private Network, who extended my sick leave payment and provided support through HR and occupational health.
“However, coming back to work on a phased basis was challenging. I’m not sure if I’ll ever have the energy for full-time work again, and the drop in income is something I never considered before all this happened – but it’s just another hidden cost of cancer.”
The Irish Cancer Society’s Daffodil Day takes place on Friday, March 28th. As the day approaches, Amy urges people to be aware of their bodies and seek advice if any concerns and to support the Irish Cancer Society campaign in any way they can.
“Check your breasts and know what is normal for you,” she says. “My cancer wasn’t a lump, it was a change in texture – so if I hadn’t pushed for further tests, who knows how much it would have spread. We have to be our own advocates. If something doesn’t feel right, please keep asking, keep pushing, and don’t stop until you get the answers you need.
“Also, Daffodil Day is about more than just fundraising, it’s about raising awareness, its sharing information and hopefully in my case, its also about spreading hope. I know I had a difficult experience, but I have come out the other side a fit and healthy woman.
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“Of course, the fundraising is also critical. It helps fund research, patient services, and resources for people going through this. I know first-hand how important that support is, even though the HER2 gene was identified in the 1980s, Herceptin, which was the hormone drug that I was treated with, did not come on to the market until 1998. This drug alone has significantly improved the long-term prospects for this type of breast cancer. So ongoing investment in research is critical to ensure we are able to have the best possible outcomes and live long and healthy lives.”
