Nearly half of all hospitals are failing to provide specialist support for people living with secondary breast cancer, which means thousands of women aren't getting the care and support they need to live well with the disease for as long as possible.
We spoke to Tracy, a secondary breast specialist cancer nurse at the Dorset Cancer Centre in Poole, about the importance of providing support to women living with the condition.
I am here to support women with secondary breast cancer
I am a nurse dedicated to the support and care of women with secondary (or metastatic) breast cancer. Secondary breast cancer is breast cancer that has spread from the breast to other sites and although we can manage it, often for long periods, unfortunately at this present moment, it’s not curable.
A diagnosis of secondary breast cancer is far more devastating than the initial, primary diagnosis.
Although all patients diagnosed with cancer need support and psychological intervention at some point, women diagnosed with secondary breast cancer are understandably extremely anxious when first aware the disease cannot be cured.
There is a lot of uncertainty. The uncertainty is unfortunately ongoing with a life dominated by treatments and side effects.
Women with secondary breast cancer have very complex needs
They are very obviously frightened and worried about when they may die; they may have children and are distraught at the thought they may not see them grow up; they may have pain and be living with difficult symptoms which severely impact their quality of life.
I have found the term coined by patients ‘scanxiety’ is very apt as they often live from scan to scan. They need support and encouragement to be able to try to live a ‘normal’ a life as possible between these times.
I make sure I am with them when they get their scan results, especially when disease has progressed. This is often the time when they need the most emotional support. I’m also there for in between scans, if they are worried or feeling ill.
One patient referred to me as being her anchor when she was lost at sea.
There are peaks and troughs for how a person may need support. They may be very well for long periods of time and then they don’t need me. But if they’re not so well or they need to change treatment, then you see a lot of each other.
We stop women with secondary breast cancer feeling forgotten
It is evident that the patients I meet from neighboring Trusts who don’t have secondary breast cancer nurses do feel very sad and upset that they don’t have the same level of support. They have described how they feel forgotten and somehow less important. Without a secondary breast cancer nurse, the specialist support they need is just not there.
And it’s not just the patients that need support. The family often need support as well to help them them to come to terms with their diagnosis and process the inevitable changes to their lives as well.
We empower patients to move forward
Working with Breast Cancer Care, Breast Cancer Now and patients with secondary breast cancer, I have helped set up the Secondary Breast Cancer Pledge within my trust. This is a patient-led initiative to improve services for women with secondary breast cancer.
I have also set up the Living with Secondary Breast Cancer group in Dorset, which allows patients from the neighbouring trusts come along and get support that they need. It has become one of the most successful in the UK. It is very positively evaluated. It helps patients feel less isolated and gives them to access information and guidance, empowering them to be able to move forward even though they are living with an incurable disease.
But there aren’t enough of us
I support approximately 120 women in the Trust where I work. Mine is the only role in Dorset. Patients and nurses from other hospital trusts and patients I meet at the Living with Secondary Breast Cancer group also turn to me for support.
Unfortunately there aren't enough specialist breast cancer nurses available in hospitals across the UK to meet the needs of women with secondary breast cancer. Women who don't have access to a specialist breast cancer nurse really do miss out and just don't get that support. More needs to be done to highlight the how important specialist nurses are for women who have this illness and how we need more nurses to provide the support they need.
Help us make sure that every woman with secondary breast cancer gets the care and support they deserve from their hospital.