Incurable breast cancer: Patients want more support

"It was a little bit like well, you're dying anyway, so there's nothing much we can do for you."

This is how Tassia Haines felt when she was diagnosed with incurable breast cancer two years ago.

The 30-year-old was then given support by one of Wales' two specialist nurses for secondary breast cancer.

But she wants everyone in her situation to be given help too, and a petition launched by her will be debated in the Welsh Parliament next week.

"She made me feel heard and like I do matter. She reassured me I wasn't going to die next week," she said.

"She was a translator when I felt overwhelmed, and my voice when I wanted to say something but felt like I couldn't because I was just the silly patient. I wouldn't be here today if it wasn't for her."

Ms Haines was treated in Swansea where a clinical nurse solely dedicated to secondary breast cancer is in post.

Secondary cancer means that the cancer has spread to another part of the body and can no longer be cured.

Her treatment has now moved to Cardiff, where the latest data shows the role does not exist.

The other nurse in Wales in this post is based in Hywel Dda health board, which covers mid and west Wales.

Her petition calling for more of these nurses across Wales will be debated in the Senedd after generating considerable support.

She said: "I've lost 22 friends since September 2020. I think about my friends and I feel like they were failed.

"When I was really sick, I thought I have to do something. Why is it that someone who is lying on what they think is their deathbed, and they can't walk and they're really struggling from chemo and they're numb, they think they have to do something - when we've got people making decisions?

"To be honest, it does really anger me, but I try to keep a lid on it because that kind of emotion isn't beneficial."

Jess Madge, 71, from Menai Bridge, Anglesey, has had incurable breast cancer for four years and said she would have appreciated a nurse to help her deal with the "emotional turmoil".

She said: "You're overwhelmed with leaflets and information, but there's nobody to talk through that information and pick through which bits are right for you.

"You're worried about the treatments and whether they'll work and the worry is all raised by the information they give you, but there's no-one to put it into perspective."

Betsi Cadwaladr University Health Board, which covers north Wales, has recently appointed a clinical nurse specialist for secondary breast cancer and colorectal cancers.

It has plans to appoint another two nurses in this area by the end of the year.

Ms Haines' petition also calls for better awareness of symptoms and for the number of secondary breast cancer patients in Wales to be recorded.

Ann Baker, who was Ms Haines' specialist secondary breast cancer nurse in Swansea, said: "I had 186 patients with secondary breast cancer under my care as I retired last year. It's my data, not official data but it needs to be addressed so funding is provided for the care that's needed."

Ms Baker was awarded a British Empire Medal (BEM) for her work with secondary breast cancer patients in 2020 after being nominated by her patients.

Richard Pugh, head of Macmillan Cancer Support in Wales, said incurable breast cancer patients were seeking help from them because it was not available on the NHS.

"This isn't a new call, we've heard this now for a decade. As Macmillan we've started to put roles into this area because we can't wait any longer.

"We know what those roles achieve. We need less thinking and more doing to put them in place."

Some health boards contacted by BBC Wales said they do have plans to appoint nurses in this area over the next few years.

A Welsh government spokesperson said: "We expect people with metastatic breast cancer to be supported by a multi-disciplinary team, including specialist nurses. It is for health boards to decide how to deploy their workforce to meet professional standards.

"A new cancer information system is currently under development that will provide better data on metastatic cancer and next year a national clinical audit will be introduced for metastatic breast cancer to support improvements in the quality of care."

More on this on Politics Wales, 10:00 BST Sunday, BBC 1 Wales