A DUBLIN WOMAN who was diagnosed with lung cancer after seeking medical treatment for raynaud’s syndrome is urging members of the public to educate themselves on lesser known symptoms of the disease.
Susan Leatham is telling her story in support of the Marie Keating Foundations’ call for the Government to support the introduction of a targeted lung screening programme in Ireland, as evidence has shown that it could improve survival rates.
Lung cancer continues to be the deadliest form of the disease in Ireland.
Liz Yates, the CEO of the foundation told The Journal that in this year’s budget the National Cancer Strategy did not receive “a cent of funding”, which is “just not good enough”.
Susan, 66, has said that she considers herself very lucky to have had an early diagnosis, which meant that her cancer was detected at a stage where she was eligible for surgery. Now, two years later she is back to work, and back in good health.
In July 2021, she had gone to her GP about having very cold hands, with her finger tips often turning completely white.
Initially, she thought that the symptoms may have been caused by her opening the freezer too often, but she was informed that she had raynaud’s syndrome – a condition that causes decreased blood flow in your fingers.
“One I found out about what was causing it, I tried to stay warm, and acted on the doctor’s advice, but I found that the problem was persisting and I was also getting very bad bone pain, and it actually became quite debilitating,” Susan explained.
“I just had a feeling that something else was going on with me, though I had no other symptoms,” she added.
After discussing it with her husband, she made the decision to go back to her GP, who referred her to a rheumatologist, who recommended that she have a CT scan of her chest and abdominal area.
“I had the scan, and they found something in my lung. I was sent for other tests over a period of eight weeks, and by September, I went into the hospital alone – because this was during Covid – and I was told that I had lung cancer. It was a complete shock for me, as I had experienced no respiratory symptoms,” she said.
Susan explained that she feels there is still some stigma around lung cancer, and that growing up for her, it was something that was too scary to talk about.
“It was seen as a death sentence. When a neighbour or someone was diagnosed with it, you whispered the words – it wasn’t something we’d want to talk about. I didn’t know how much attitudes had changed until I organised a zoom call with my daughters who were in England and Germany that night, and they were so optimistic.
“That wasn’t what I had expected. They said ‘OK, it’s small mum, and we’ve caught it early, so let’s talk about what happens next’,” she said.
Through further testing, Susan was informed that she had RET positive lung cancer, and that her tumour was 2.2cm in size. RET rearrangement happens when a piece of DNA joins with a gene and creates a fusion, and that leads to uncontrolled cell growth and cancer.
It is incredibly rare amongst those diagnosed with lung cancer, accounting for only 1-2% of cases, and often it occurs with lung cancer patients who are seldom or non-smokers.
Susan went for a lobectomy, during which the lower right lobe of her lung, where her tumour was located, was removed.
“It was an incredibly quick process from diagnosis to my operation. I was very lucky that they were able to operate on me, I have been told. I found that the hardest part was knowing something was in my lung, but not knowing what. At least when I had my diagnosis, I could focus on my action plan,” she said.
Susan said that she had six weeks of intensive recovery time, and then it was six months to a year before she started to feel her health being further restored.
She also underwent chemotherapy in that time, and found the side effects of the treatment harder to deal with than the operation recovery itself.
“I started getting involved with speaking to other people who had lung cancer. That helped enormously. I joined a monthly meeting with the Irish lung cancer community, which is for people who have had it, and their carers. It makes a difference talking to people who know what it is really like.
“What it made me realise how many new therapies there are all the time. Of course, the reason why lung cancer is the deadliest form of cancer in Ireland is in part because it is usually diagnosed late, at stage 4. So I did also make friends with people through the group who had various stages of cancer. It was important for them too to have people who understood to talk to,” Susan said.
The 66-year-old is an administrator in a HSE community health organisation. She said that it was important for her, once she was well enough, to return to work.
“I had incredible support from my husband and daughters during my recovery – one of my daughters actually moved in with us at the time to help. It was very important for me, even though I am past retirement age now, to go back to work when I could,” she said.
Over the last month, the Marie Keating Foundation has been once again lobbying the Government and the HSE to introduce a national lung cancer screening service, similar to what we have for other forms of cancer.
It has said that as lung cancer continues to claim more lives annually amongst both women and men than any other cancer in Ireland, with 1,850 people dying from the disease each year according to the latest figures, it is essential that a screening process is brought in to ensure earlier diagnosis in more cases.
The foundation, which only gets a small amount of its funding through grants, and fundraising most of it entirely independently, has launched its ‘Big Check Up 2023′ campaign over lung cancer awareness month.
Liz Yates, CEO, has said that she is “deeply disappointed” that in Ireland today, lung cancer death rates remain alarmingly high, chiefly due to “late diagnosis”.
“Currently in Ireland, the 5-year survival rate for lung cancer patients is just 24%. This is extremely low compared with other five-year survival rates for common cancers such as, Prostate: 93%, Breast: 88% and Colorectal: 66%,” she added.
Speaking to The Journal, Yates said: “We have a breast screening programme, a cervical check programme, and others have been introduced. In the last two years they have been improved and refined. We know from other countries that the evidence is strong that a screening programme can lead to earlier diagnosis, and an improvement in survival rates. The programme can be very targeted towards those who are most at risk.”
Yates said that the foundation, and other organisations are “not asking for much”, just that the Government enable the HSE to carry out the recommendations within the current cancer strategy.
“The fact that no action has been taken on this, means that the chances of seeing a screening programme being developed any time soon feels slim, but we are not going to stop calling for it, and we are not going to stop raising the public’s awareness of the symptoms of lung cancer, because awareness can save lives,” she said.
The main symptoms to look out for with lung cancer are a cough, repeated chest infections, coughing up blood, breathlessness, persistent tiredness, loss of appetite, and unexplained weight loss.
There are also less common symptoms, like a hoarse voice, difficulty swallowing, swelling of the face and neck, and persistent chest or shoulder pain.
You can find out more here, and if you have any concerns about your health, you should get in contact with your GP.
You can support the Marie Keating Foundation, which provides grants to people experiencing cancer and provides essential services to them and their families here.
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