As Ovarian Cancer Awareness Month continues, we talk to the nurse leading the charge at Target Ovarian Cancer’s new support line, which is quickly becoming a vital part of the charity’s work.
Jane Loughnane is Target Ovarian Cancer’s nurse adviser on the charity’s newly launched support line.
She has been nursing for more than 30 years and for much of that time, has specialised in cancer nursing, mostly as a chemotherapy nurse specialist. Last year, she took a break to consider a change of direction. During that time a new nurse specialist role was announced at Target Ovarian Cancer – it was perfect timing.
We wanted to talk to Jane about her new role and how it is helping. Luckily for us, she’s a chatty type.
What is the Target Ovarian Cancer Support Line, and why was it set up?
We know that a diagnosis of ovarian cancer can be difficult, when 35 per cent of women say they have needed support to deal with feelings of isolation, and 51 per cent of women say they have needed support coping with the fear that the cancer might come back.
Some do not have access to a clinical nurse specialist – an important pillar of support for someone with a cancer diagnosis.
My role as nurse adviser – and the launch of the Target Ovarian Cancer support line – is already meeting this clear, unmet need to support women to live well with ovarian cancer. It’s an essential service, and by being available on the phone and over email, I hope to provide vital information and support, and show women ways to connect with others online and in person.
What does the support line offer?
Our nurse-led support line provides confidential information, support and signposting for anyone affected by ovarian cancer.
It’s open from 9am until 5.30pm, Monday to Friday. During these hours, calls may be taken by me or a member of the supportive services team who, if necessary, will arrange for me to call back at a mutually convenient time.
I also do follow up calls. These are particularly helpful for women who are concerned about the symptoms. We speak for the first time, and if it is appropriate, I recommend she visits her local GP. I can then call back within a few weeks to see if there has been any progress to diagnose or rule out cancer.
We offer something unique: immediate access to support when someone has a question or worry. They know there will be a friendly and knowledgeable nurse specialist at the end of the line.
One thing I have to remind people is that I am not here to diagnose. If someone is unsure of their symptoms, I will suggest that they go back to their own healthcare team, or local GP.
Now it has been going for a few months, what has the take-up of the service been like?
Before the support line was set up, Target Ovarian Cancer had been receiving well over a 100 calls and emails a year, even though at the time the support line did not exist formally. Back then, non-clinical members of the supportive services team provided an advice and signposting service.
I started as the charity’s very first nurse adviser just before the launch of the support line in autumn last year.
Since I joined we’ve been talking about this much-needed extra support for women with ovarian cancer publicly, and have seen a huge increase in contacts to the support line.
I was expecting that the activity would increase once we started talking more about it online and in the media – and it has! I expect this increase to continue.
Worries about the symptoms of ovarian cancer and family history form more than 50 per cent of calls and emails I get, so these may not actually be from women with a diagnosis of ovarian cancer. The symptoms can be vague but it is important to go to your GP if you are experiencing any of these symptoms and they are new, frequent and persistent:
• Persistent pelvic or abdominal pain (that’s your tummy and below)
• Increased abdominal size/persistent bloating – not bloating that comes and goes
• Difficulty eating or feeling full quickly
• Needing to wee more urgently or more often than usual.
Occasionally there can be other symptoms such as changes in bowel habits, extreme fatigue, unexplained weight loss or loss of appetite. Any postmenopausal bleeding should always be investigated by a GP.
I have also taken calls on a range of issues such as treatment and side effects, psychological and emotional concerns (80 per cent of women with ovarian cancer say they have experienced mental ill health), concerns that the cancer has come back, and younger women concerned about a diagnosis of ovarian cancer.
Do you get calls from friends, family members and carers of people who have ovarian cancer?
The majority of calls come from the women themselves, but I have had calls from family, including husbands and brothers. They often feel powerless and are desperate to do something to help.
“At the moment there is no screening programme for ovarian cancer: there is no conclusive research evidence to say that it would save lives. So it’s really important that more women know the symptoms.”
This is something that relatives of someone with any cancer can experience – not just ovarian cancer. They may be willing to go to the ends of the earth to do something for a loved one, and yet they feel powerless to help.
Women sometimes call when their husbands or partners are out because they want to talk without worrying them. They know they may become very emotional when talking to me, and they don’t want to upset their family.
What are the main benefits of calling the support line?
One of the most important things for people who get in touch is having the time to talk through their questions and knowing where to seek guidance.
One thing people find hard in the face of a cancer diagnosis is knowing what questions to ask of their doctors and nurses. I give them the confidence to ask questions – and I help them by suggesting the sorts of questions to ask either their GP or the clinical team where they are being treated.
I often signpost them to information on the Target Ovarian Cancer website, which has a huge amount of advice. It’s written in plain English and is accessible to everyone.
Our Pathfinder study tells us that things are getting better, but we still have far to go. There has been an increase in women knowing those all-important symptoms, and yet just one in five can name bloating as one of the main symptoms. There has been a huge improvement in nursing provision, from 84 per cent of women saying they have a named clinical nurse specialist in 2009 to 93 per cent in 2016.
We have also seen a leap in GP awareness of the symptoms of ovarian cancer, with the help of Target Ovarian Cancer’s GP learning modules. The number of women waiting three months or more for a diagnosis is lower than ever – but this is still just under half of women who are kept waiting, due to vague symptoms or delays in getting test results.
Progress is there, but we need to see more. That’s why we’re all working so hard to raise awareness during Ovarian Cancer Awareness Month.
What do you think are the main areas which need addressing when it comes to ovarian cancer?
Raising awareness of symptoms is crucial. At the moment there is no screening programme for ovarian cancer: there is no conclusive research evidence to say that it would save lives. So it’s really important that more women know the symptoms.
I get quite a few women who call to ask about screening, and are surprised when they realise that there is nothing for ovarian cancer and that the cervical smear test only tests for cervical cancer.
One thing Target Ovarian Cancer is working hard to do is find more effective treatments. Research is moving away from chemotherapy treatments, to more targeted treatments, like bevacizumab (Avastin), one of the more recent drugs to come on the scene for ovarian cancer.
To find out more about the Target Ovarian Cancer Support Line, visit the website.3351 Views