• This is the first Macmillan Secondary Breast Cancer Clinical Nurse Specialist (CNS) role in Wales
  • Secondary breast cancer is a complex disease, which is not curable, but symptoms may be treatable
  • Macmillan would like to see every health board in Wales appointing a designated Secondary Breast Cancer CNS

Macmillan Cancer Support, in partnership with Cwm Taf Morgannwg University Health Board, have funded the first Macmillan Secondary Breast Cancer Clinical Nurse Specialist (CNS) in Wales.

Gail Williams,

Gail Williams, who has 37 years of nursing experience, mostly in cancer services, brings her clinical skills and knowledge to support patients living with this complex diagnosis.

The CNS role is a specialist nursing role to support women, and men, with a secondary breast cancer diagnosis that brings physical, emotional, and financial challenges to patients and their families.

Secondary breast cancer, which is also called advanced breast cancer or metastatic breast cancer can be treated, but it cannot be cured. Treatments such as hormone therapy, chemotherapy and radiotherapy have improved, and more and more patients are living longer after a diagnosis.

One of Gail’s patients is Lynda Cowell from Pontypridd who was diagnosed six years ago with secondary breast cancer.

Secondary breast cancer.

“Five years after my primary diagnosis I started to relax and think things were fine”

I didn’t realise that after five, or 10- or 20 years cancer can come back.

“I didn’t realise that there were specific symptoms with my lobular breast cancer. Nobody told me to look at the symptoms in the stomach because this type of cancer can come back in the abdomen.”

Lynda believes that there are clear differences in levels of support between patients with a primary breast cancer diagnosis and those with a secondary diagnosis.

“With my primary diagnosis, I was told in hospital and then within a few days a nurse came out to the house and sat with me, my girls and my family and we went through my diagnosis, and they could ask questions.  With secondary, I was just told and referred to Velindre for treatment. The family weren’t involved at all.”

Lynda believes that the relationship that she has with Gail, as her specialist nurse has made an immense difference to her experience of living with secondary breast cancer. This is evident when she speaks with other women living with the incurable diagnosis and they compare clinical and emotional support, such as signposting to additional services like welfare benefits advice.

Support groups,

“Gail told me about support groups, and I had counselling for a while. I fear sometimes when

I go for results, and I would rather have the results with Gail than the oncologist because I know Gail and she knows me. I know I can talk to her.

“When you are living with cancer you don’t switch off from it – it is constant. You can’t just have a headache and you can’t just have a cold because it is always in your mind. Cancer is the first thing that comes to mind.

“If Gail had not been here, I think I would have needed more counselling, and I think my anxiety would be through the roof.”

Gail Williams’ new role as the first Macmillan Secondary Breast Cancer CNS, will mean she works across Cwm Taf Morgannwg’s University Health Board’s area, including the newly opened Snowdrop Breast Centre situated just outside of the Royal Glamorgan Hospital, the Princess of Wales Hospital in Bridgend and Prince Charles Hospital in Merthyr Tydfil.

Speaking about priorities for her new role, Gail said: “It’s important to highlight to health professionals that the service is here and that the service is a patient-led one because that’s what patients have told us that they need.

Care is very ad hoc so it’s about having a streamlined service

“What has been lacking for lots of patients with secondary breast cancer is that the care is very ad hoc so it’s about having a streamlined service- pathways are being developed to ensure that we can strive to provide equitable access for all.

“We want people to feel that they are able to continue to live well and have a fulfilling life. It is about addressing the patient’s physical needs but is also not forgetting about the emotional impact or the financial impact or the impact on family and friends.

“I have been told often how important it was to someone to have professional continuity, the amount of information at times can be overwhelming. Personalising information can help to dispel many inaccuracies and fears surrounding Secondary Breast cancer. In my role as an Oncology Specialist Nurse, I regularly received calls from people who had had early breast cancer treatments years before. They’ll ring me up out of the blue and say, ‘I know I haven’t seen you for about five or six years, but I am really worried about this symptom, and I don’t seem to be getting anywhere with my concerns.’ I would try and help them navigate through the existing service. Having the experience and knowledge of the red flags and symptoms of recurrence I would not hesitate to say to someone, ‘You know your body better than anyone else and if you are concerned then you should pursue that concern.’”

Speaking about Gail Williams’ appointment, Zoe Barber, Consultant Oncoplastic Breast Surgeon and Clinical Services Speciality Director for Breast Services at Cwm Taf Morgannwg University Health Board, said: “Cwm Taf Morgannwg University Health Board are delighted to have partnered with Macmillan to appoint Wales’ first ever Macmillan-funded secondary breast cancer nurse.

“Gail is a fantastic addition to our team who brings with her a wealth of experience and expertise. Her patients and colleagues love her compassion, knowledge and determination to put her patients at the centre of everything she does.

“We hope that by developing this important post, we will not only improve the care provided for those living with metastatic breast cancer in our area but also encourage other Health Boards in Wales to do the same, working together to improve vital support for those living with metastatic breast cancer across Wales.”

Speaking about the impact that this new CNS role may have on the lives of patients with a secondary breast cancer diagnosis, Macmillan Breast Lead, Marguerite Holloway, said: “A secondary breast cancer diagnosis is truly devastating for the patient and for their families, and many patients are living with this isolating, misunderstood diagnosis where there are often no clear pathways for support. Sadly, they are living with many uncertainties in their lives and in desperate need of specialised and patient-centred nursing.

Having a clinical nurse specialist has an overwhelmingly positive impact

“We know that having a clinical nurse specialist has an overwhelmingly positive impact on a patient’s cancer care and that’s why at Macmillan we are delighted to be working in partnership with Cwm Taf Morgannwg University Health Board.

“It is our ambition for every health board in Wales to have this desperately needed post in place to provide the specialist support and care for patients with secondary breast cancer who are often overlooked.”

Macmillan is currently working with health boards throughout Wales to increase the number of clinical nursing posts.

Macmillan has established a specialist ‘Inthis2gether’ secondary breast cancer support group which offers online and face-to-face advice, and support and which also acts as an advocacy group for secondary breast cancer patients across the southeast, southwest and north Wales. If you would like to know more, please contact info@heart2hartsolutions.co.uk

For further information about secondary breast cancer, please visit the Macmillan website for further information on www.macmillan.org.uk

The Macmillan Online Community also has a Secondary Breast Cancer forum. This is an online support group for people with secondary breast cancer (metastatic breast cancer /advanced breast cancer) and their loved ones. It is a space to join to meet others and share experiences and emotional support.

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