Cancer Treatment Keeps You Alive : Personalised Post-Treatment Support Lets You Live
Listening to patients about what matters to them is as important as clinical care, says patient Val
Bradford ovarian cancer patient Val has welcomed the launch of the Quality of Life survey as a way of ensuring that patients receive the help and advice they need after treatment, tailored specifically to what matters to them and their own individual circumstances – personalised care and support.
Currently, there are no national outcome measures (known as “metrics”) that look at the quality of life of people diagnosed and treated for cancer. The national Quality of Life survey – launched this week – will be used to create those metrics and in turn enable the right support to be provided to the growing number of people living with and beyond cancer.
In West Yorkshire and Harrogate, partners have already been piloting approaches to personalised care and support, including the Next Steps Clinic in Bradford, where Val was a valued member of the steering group. The project is led by charity Cancer Support Yorkshire in partnership with West Yorkshire and Harrogate Cancer Alliance, Bradford Teaching Hospitals NHS Trust, and with funding from Macmillan Cancer Support. More information here
In October 2015, a persistent cough left behind after a dose of flu prompted Val, a research professional, to visit her GP. She had begun to experience pain just below her ribs and in her pelvic floor muscle, and put it down to the strain of coughing too much. As a woman in her early 50s, she had put a number of other symptoms, including night sweats, bloating and running to the toilet, down to possible onset of the menopause.
By the time she left her doctor’s surgery that day, she had had blood taken, including the CA125 tumour marker test. Two days later she was told that she may have cancer and was referred to specialist care by her GP. Shortly afterwards, Val was diagnosed with stage three, high grade ovarian cancer. The cancer had spread throughout her abdomen and to her lymph system.
“A cancer diagnosis is traumatic. The treatment is brutal and the side effects can be long term,” said Val, who has just started a further course of chemotherapy for a recurrence of the cancer, discovered during the Coronavirus pandemic. “Ovarian cancer isn’t a silent killer, as it is often described. It whispers, so you have to listen very carefully to any changes in your body, and act when you feel something isn’t as it should be.”
In early 2016, Val underwent surgery to remove the cancer followed by six lots of initial chemotherapy. After treatment, Val went on to have a CT scan which provided confirmation that there was no residual disease.
A supportive network of family and friends made all the difference to Val’s recovery. However, the opportunity to access projects like Next Steps would have hugely improved her quality of life.
“When you’re having treatment, all your decisions are made for you,” said Val, who lives in Saltaire. “As soon as treatment finishes, you are left in the wilderness, with nowhere to go. Not having anywhere to go meant that I internalised things and became very isolated. Having a project where I could have accessed support earlier means I wouldn’t have ended up in the state that I did, needing counselling and physiotherapy.”
The Next Steps offer of support to people with their personal finances, the ability to maintain social networks and psychological wellbeing, as well as chronic physical problems such as fatigue and pain, is formalised in a face-to-face appointment at Cancer Support Yorkshire.
Patients are supported through the process by the use of an electronic Health Needs Assessment – or eHNA – devised by Macmillan, which helps patients to think about their issues or concerns and possible solutions. They are then signposted to support services, as appropriate.
Val thanked the NHS professionals who cared for her, both after her original diagnosis and her recent recurrence, including her surgeons, chemotherapy nurses, oncologist and Macmillan nurses. “Cancer treatments have come a long way, and I am grateful to the whole team who saved my life and helped me start to build a new one,” she said. “I’m glad I now have the opportunity to make sure cancer services are made better for those women who may be diagnosed with ovarian cancer in the future.
“It’s also absolutely vital that we support patients with what they need after treatment has ended. Cancer treatment keeps you alive, but services like Next Steps, and the support they provide, help you to really live.”
