Cervical cancer survivor: 'Diagnosis is devastating, so reliable information is critical'
The thisisgo.ie website enables cancer patients to access information from “reputable sources” directly relating to their situation.
When Jenny Blighe was diagnosed with cervical cancer in 2017, shortly before her wedding, she found it difficult to find reliable information on the potential side-effects of her treatment, which tragically for her included infertility and lymphoedema.
“I found myself staring at the internet trying to find out as much as I could because for me having as much information as I could helped me to deal with it a bit better,” she said.
“It’s such a dangerous thing, you need to be using reputable sources.”
When diagnosed, Jenny said she received a booklet about her care in Dublin but the particular treatment she was getting, a radical trachelectomy and its after-effects, was hardly mentioned.
Though cancer-free now, Jenny is facing life-long consequences from her treatment including infertility and lymphoedema. Describing infertility as “devastating” for herself and her husband, Jenny particularly wanted information on issues such as this.
She says she was not alone when it came to this 'information vacuum' and this week an Irish website, covering the mental and sexual health impacts of cervical cancer, launches in response to a clear need from patients.
The free platform allows women to create a private profile with details of their own cancer diagnosis. They can then access information from “reputable sources” directly relating to their situation.
Jenny has volunteered to become a patient advisor on the site. “Being involved in the likes of this website for me is the only positive thing that has come out of my diagnosis with the thoughts of hopefully being able to help other people navigate their journey around the lack of information out there,” she said.
“There are very few particularly Irish websites with good information from a reputable source. One of the best things about this site is newly diagnosed patients who use this platform won’t ever realise the vacuum that was there before.”
The website is the first part of a gynaecological cancers project in Cork and Dublin through the Irish Cancer Society’s women’s health initiative. They will address a lack of information around “urinary problems, lymphoedema, and severe psychological distress” as well as “sexual problems, infertility and premature menopause”.
The new https://t.co/tDBmaoESjh platform providing relevant, reliable and evidence-based information for people affected by cervical cancer has been launched to mark #WorldGoDay today.
— Irish Cancer Society (@IrishCancerSoc) September 20, 2021
You can read more about it here 👉 https://t.co/HIJ2wSHz0M pic.twitter.com/RWpG7wU7Ij
The website team worked under Donal Brennan, professor of gynaecological oncology at University College Dublin.
Yvonne O’Meara, women's cancer survivorship research coordinator for the programme, said of the website: “You will get information that is exactly pertinent to the needs that we anticipate you will encounter. And [it includes] the psycho-sexual side-effects that will happen as a result of the interventions.”
Discussing cervical cancer can be “less comfortable” than other cancers, Ms O’Meara, who has a background in psychosocial oncology, found.
“This website is one way to start talking about issues around our vaginas, " she said. "And to start talking about the implications it has for our relationships when we have interventions that are necessary for the eradication of the cancer but leave their mark in all sorts of ways, often in invisible ways we don’t get to hear or see about.”
Information on clinical trials is also provided as women outside of Dublin worried they could miss out on opportunities. “They feel everything happens in Dublin and you would have a better chance in Dublin but that is not true,” she said.
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