When Siobhan Harrison felt a lump in her breast aged just 23, she tried to reassure herself that it wouldn't be anything serious. But a little over a year on the now 24-year-old has just completed treatment for an aggressive form of breast cancer.
Siobhan, from New Tredegar, now wants to raise awareness about the disease in younger women. She is also calling for faster diagnosis on the NHS after being put on a year long waiting list for an ultrasound scan to determine the cause of her lump.
Siobhan, who is a barista at Costa Coffee, said she worried about what might have happened if she hadn't spend hundreds on a private scan months earlier than her NHS appointment. Speaking of her diagnosis, she said: "I went to the doctors in November, 2020, because I was feeling exhausted and I had a burning pain in my arm - I don't know for sure if that's linked. I thought maybe I was anaemic, but all that came back was a vitamin D deficiency. I took supplements and felt a bit better, but only noticed a slight difference. Then, in December, 2021, I found a lump in my breast while checking in the shower."
Read more: The end-of-life nurse who had to fight her own battle with breast cancer in the middle of a pandemic
Describing how her lump felt, Siobhan said it was small, hard and about the size of a pea. "It felt similar to a knuckle and It was higher up on my chest than I would have expected, it was half way between my breast and my collar bone," she explained. When she visited her GP for an examination, Siobhan said she was referred to the the breast clinic at the Royal Glamorgan hospital in Pontyclun. But when she heard nothing after a few weeks and her lump remained and appeared to grow, she became concerned. You can get more health news and other story updates by subscribing to our newsletters here.
"A few weeks passed and I heard nothing," she said. "I rang the GP back up and was given a number to check what the waiting times were like. The person on the phone told me that the waiting list was about nine months - and I had been waiting a while already. I rang my GP again and said my concerns were growing and the lump itself was growing and she put in an urgent referral for me. I waited again for around two weeks, called the same number again and was told the urgent referral made no difference and that the waiting list was still nine months. With the few months I had already been waiting, it would have been a year before I'd have been seen altogether."
Siobhan said it was suggested to her to try and source a private scan if she could in the mean-time. Worried about what might be causing her lump, Siobhan paid around £400 for an ultrasound at Spire Cardiff Hospital - but she's now thankful she did. She said: "They didn't seem too concerned. The consultant examined me first and said it's more than likely a Fibroadenoma (a benign, painless and firm breast lump also called a breast mouse). However, it was unusual for me to have lumps in my breast - I'd never had one before. Following that, I asked if I could go back to the NHS and they urgently referred me again."
On June 17, Siobhan said she went down to the Royal Glamorgan Hospital for a scan and biopsy to determine what the lump was. However, she was turned away because it was too busy. "I was waiting a few hours with some other women and then we were told they were over-booked," she said. "There were women crying there, they had all been waiting hours. They were all older than me and I felt like the odd one out, I thought they might be further down the line with their treatment, but part of me still didn't think I would have cancer."
She said the period of waiting before her diagnosis was a very "lonely" time of wondering whether she was about to be diagnosed with cancer and how that might affect her life. Suffering with health anxiety, she said she'd had lumps checked before which had always turned out to be okay - so she tried to reassure herself this time around.
Five days after her original appointment, Siobhan had her scan and biopsy at the hospital on June 22. A week later, on June 29, she was finally diagnosed with triple negative breast cancer, which was at stage two with grade three cells. This meant her cancer wasn't fed by hormones and that it was hard to determine its cause. It also meant the cancer was aggressive and had the ability to grow more rapidly.
She said: "The day I was diagnosed, I went down with my mum and dad and they stayed in the car because of Covid. I was still trying to reassure myself. It was quite a shock because everyone had been reassuring me. I was quite upset and crying and then my mum and dad could come in. In some way you feel relieved that you've gone that far, because you knew something wasn't quite right. It made sense why I'd been feeling so tired."
For Siobhan, the most difficult part of her ordeal was getting the diagnosis. She said she cried the hardest at that point than at any other in the last year - but after that, she was determined to get on with her treatments.
She said: "I was overwhelmed, there was a lot going on, like thinking of losing my hair and having to let work know because I was supposed to be in the next day. The biggest cry I've had was just after my diagnosis, after that I just wanted to get on with it and sort it all out."
Siobhan's treatment included a successful operation to remove her lump, followed by 12 rounds of chemotherapy followed by radiotherapy. She was also given hormone suppressant injections to protect her fertility from the harsh treatments, which saw her experiencing a temporary menopause. To ensure she could have children in the future, she froze 14 of her eggs.
But despite her ordeal, Siobhan said she felt lucky in many ways. She said: "After my surgery I had to wait for results, which showed it hadn't spread to my lymph nodes. I felt lucky then because it had been removed and hadn't spread - especially with having to wait so long. I dread to think what would have happened if I waited another nine months. Reading other people's stories, you know time is really at the essence. It can take weeks to grow and I was given nine months to wait."
Siobhan's breast cancer story
Because of her concerns about her NHS waiting time, Siobhan submitted a complaint to Cwm Taf Morgannwg Health Board. She hoped it would highlight the issue to try and improve the system.
Responding to her complaint, the health board apologised and undertook a review. It was found that Siobhan was referred to the breast clinic under the correct National Health and Care Excellence (NICE) guidelines on treatment of breast lumps. The guidelines state: "Consider non-urgent referral in people aged under 30 years with an unexplained breast lump with or without pain."
Responding to the long wait following Siobhan's second - and this time urgent - referral, the health board said: "At this time, the urgent waiting list within the breast service was under significant pressure because of the pandemic and our waiting times were longer than we would have liked...Pre-covid urgent referrals would ideally be seen within eight weeks."
A spokesman for the health board has since told WalesOnline that funding from the Welsh Government would focus on key areas of immediate improvement. It also stated that a new breast unit and mobile endoscopy unit were being commissioned for use at the Royal Glamorgan Hospital to benefit patients in the health board.
But it isn't just waiting times that Siobhan would like to see improved following her experience. She also worries about the support available for those diagnosed over the age of 25. She explained how she lost her hair very abruptly following her first round of chemotherapy and was gratefully supplied a wig by the Little Princess Trust - who support those up to the age of 24. She also received support from the Teenage Cancer Trust who help young people under 25.
"I do wonder, if you are 25 or older, what support is available for you? Because I was at the end of that bracket. A lot of support as well isn't available unless you go out and get it yourself - and sometimes you don't know about it unless you research yourself," she said.
Siobhan said she hoped sharing her story would help raise awareness of the importance of checking for lumps - no matter how young you are. She also hopes it will encourage young people to feel empowered to push for the healthcare they need. She said: "You have to be an advocate for yourself. You have to keep pushing if you do find something that isn't quite right. Try and find out what's normal for your body so you know when something is wrong."
A spokesperson for Cwm Taf Morgannwg UHB said: “We cannot comment on individual cases but recognise that our cancer waiting times are not where they should be. Now, working with our regional partners, and benefitting from the Welsh Government’s investment in planned care, we are focussing on key areas of immediate improvement. As a result of increased investment in specialist workforce and equipment, we expect to realise significant benefits to patients. We are focused on pathways that have recently been challenged with sustained increases in referrals, including breast and colorectal services, they have also been equally challenged by staff sickness and infection control measures.
“Consequently, a new Breast Unit (supported by an immediate £1m investment in a specialist cancer clinical workforce) and a mobile endoscopy unit, are currently being commissioned for use at Royal Glamorgan Hospital, which will have benefits for patients across the whole of Cwm Taf Morgannwg. We would like to apologise to our patients in acknowledgement of any increased anxiety this may cause and remain committed to reducing our waiting times and improving services locally.”
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