“There’s a very fine line between living with incurable cancer and waiting to die from it. Cancer for me is a 24/7/365 affair,” says Mandy Mahoney, an outreach support worker from London who was first diagnosed with breast cancer in early 2011.
Mandy, 48, underwent an intensive year of surgery, chemotherapy and radiotherapy before going into remission. But within a couple of years her cancer was back, and she learned it was now incurable. “I’m on my sixth recurrence. This is something I’ll either live with long-term until I die of old age or, in the worst case scenario, it will kill me,” she says.
Mandy is one of 136,000 people in England living with a cancer that is treatable but not curable, according to new patient data research published by Macmillan Cancer Support.
Separate research by the charity found these patients are more likely than other cancer patients to need support with pain, sleep problems, fatigue, exhaustion, worry, fear and anxiety. Despite these complex needs, however, Macmillan found 77 per cent of patients with incurable cancer – as many as 100,000 people – feel they are not getting all the support they need.
For Mandy, there is a marked difference between her initial treatment and living with cancer long-term. “When it’s a primary cancer, there is still an aspect of hope and a definite end to treatment. The only end I’ve got is one that no one really wants to talk about. It’s a big shift,” she says.
Practically too, despite being on a lifelong treatment plan, Mandy says there is no longer the intensity of weekly or monthly hospital visits. “I’ve been on an oral chemo regime, which you take at home, so you just go away and plod on with it,” she says.
As a result, the support Mandy needs now is largely emotional. “In the medical model, they go straight into symptom management and keeping you here for as long as possible, but there is not really a focus on quality of life,” she explains.
Living your life in three month cycles
This, Macmillan believes, is partly a side effect of otherwise positive advances in cancer research. “More people are being treated for their cancers, and advances in treatments are enabling people to live longer, which is great,” says Macmillan’s Nikki Cannon, who previously worked as an NHS nurse.
The problem, she explains, is that healthcare hasn’t kept pace with that change – so, while a lot of resources are understandably dedicated to primary diagnosis and treatment, there is not enough focus on the needs of those with longer-term cancers.
“When you’re going through [primary] treatment, it’s quite intense, you tend to be at the hospital every week, you have constant contact with your healthcare team. Once you get into incurable [cancer treatment] you might just have a scan every three months, so you don’t have that close contact. It may be that your symptoms are building up, you don’t have someone to talk to about them, so it tends to get worse,” Nikki explains.
“We also know the psychological impact is really significant in this group – that worry, fear, and anxiety. People often tell us they live their lives in those three-month cycles, and the toll that can take on your emotions is huge. Without access to really good psychological support, that can be debilitating.”
One practical solution, Nikki suggests, would be more funding for dedicated incurable cancer care nurses, to provide services that recognise and meet this group’s specific needs. “We know there are huge NHS staffing challenges, and that’s leading to burnout and stress. We need to support the workforce to be able to care, to give them time to care,” she adds.
Staffing challenges
Those staffing challenges are something Mandy has experienced first hand. Although she has received counselling and complementary therapies through the NHS, it’s day-to-day emotional and peer support that she feels she is lacking. The Princess Royal University Hospital (PRUH), where she is treated, has one part-time specialist nurse for metastatic (secondary/incurable) breast cancer, but three nurses dedicated to primary breast cancer patients.
“If I need support on a Wednesday, and she only works Monday and Tuesday, I’ve got to wait a whole week, or go to one of the primary nurses whose time is already taken up with their own caseload of patients,” Mandy explains.
“It’s not that they don’t help, but they’re busy and stressed, so I’m less likely to contact the hospital for fear of being a nuisance,” she adds. “Sitting on a problem for a week could have serious consequences for my physical health, but it also means my anxiety is significantly heightened.”
Similarly, since going back to work full-time, she has struggled to access peer support groups because they meet during the working day. “There’s an unwritten [expectation that] we’re grateful just to be here, but I want an active life so I can thrive with cancer,” she says.
‘I don’t want people to extend my life if I’m miserable. Being able to access the right, ongoing treatment and support could make all the difference’ – Mandy
“There’s nothing in the evenings because it’s assumed that metastatic patients will just stay at home, but going back to work has made me feel useful and normal. I’ve got full-time bills and full-time cancer, and I have to marry those things up.”
When it comes to treatment too, Mandy wants more control, so she can balance prolonging her life with still being able to live it. “It’s all very well and good coming up with a treatment regime, but if that’s so harsh that the side effects keep me in bed, that’s not acceptable,” she says.
“I don’t want people to extend my life if I’m miserable. Being able to access the right, ongoing treatment and support could make all the difference to being able to live the rest of my life well.”
‘It was difficult being discharged’
Grant Mclachlan is a 50-year-old primary school teacher who also lives with long-term cancer, having been diagnosed with multiple myeloma, an incurable blood cancer, two years ago.
After an intensive 10 months of initial treatment – including chemotherapy and a stem cell transplant – his cancer went into remission, but returned earlier this year. He has weekly chemotherapy at Barts Health’s specialist NHS Cancer Centre in London.
“It was difficult being discharged after my initial treatment. You have a 100 day recovery period for your body to come to a remission state, and they don’t want you to depend on medical care for the whole time, because you don’t need it,” Grant explains. “I found it hard to take control of my own care when I was so reliant on them looking after me, but I can completely understand why they leave you to it.”
Like Mandy, Grant has had counselling, both through Barts and cancer charity Maggie’s, but says he feels a lot of anxiety about getting ill, or going on holiday and not being able to access treatment.
“For a while I had quite severe health anxiety and was calling my nurses almost every day. Even now I can never fully relax on holiday. I’ve been able to go away a few times, but it’s always in the back of my mind: what happens if I’m ill and I’m not near my [healthcare] providers? It was so bad for a while that I just wouldn’t leave London,” he says.
Fortunately, Grant says, Barts has a 24-hour hotline he can call whenever he has concerns. “You can phone up on a Sunday night, at two in the morning, and talk to a consultant. There’s always a doctor I can speak to,” he explains.
“Now, unless I become ill or phone the hotline, the only time I receive any kind of support will be every four weeks when the consultant reviews my bloods to sign off my next chemo cycle,” he explains. “It’s not like I’ve been completely thrown out in the wilderness though – I’ve always had the hotline number, and emails for three nurses I can speak to if I need to.”
A spokesperson for Macmillan said: “We know that there are a spectrum of individual experiences, cancer types and hospitals within the treatable but not curable group. For example, many women with metastatic breast cancer will live for three to five years after the cancer spreads, whereas many people with blood cancers like myeloma have better long-term survival – and we know from other evidence that people with poorer prognoses tend to have worse patient experiences.”
“Anecdotally, our experts say that the majority of patients living with treatable but not curable cancer feel as though they are falling through the gaps in the system. At Macmillan we believe one of the biggest challenges around why people aren’t getting the support they need is that there are simply not enough staff with the right skills and resources to give people with treatable but not curable cancer the personalised care they require.”
A spokesperson for Kings College Hospital NHS Foundation Trust, which operates PRUH, said: “Our metastatic breast cancer patients are supported by the metastatic breast cancer nurse and other specialist breast cancer nurses. We signpost cancer patients to external sources of help and support, such as the acute oncology helpline for patients experiencing acute symptoms. Additionally, the PRUH recently introduced a new psychological service to support cancer patients.”
The NHS did not respond to a request for comment.
