Thriving Not Surviving - Survivorship in Prostate Cancer

What happens beyond cancer?

Louisa Fleure, from London’s famous Guy’s Hospital, works with cancer survivors to address lingering issues and concerns, while also navigating the different anxieties faced by medical and nursing staff experiencing burnout.

Can you explain what cancer survivorship entails?

Clinically my role is to look after men from diagnosis through to end of life with metastatic prostate cancer. I usually meet men when they’re diagnosed. I’m involved in their treatment initiation and I run a number of nurse led clinics. So I look after men on hormone therapy and I also do some clinics following up men with castration resistant prostate cancer as well.

In the UK nurses can practise fairly autonomously, so I can prescribe, I can refer for imaging etc. Then my big passion is probably more the survivorship stuff. We do lots of events, seminars and forums, where we get men together for support, education and information.

What is cancer survivorship and is there a specific prostate cancer survivorship that is very different?

Cancer survivorship, or living with and beyond cancer, is an initiative to respond to needs of people that have had or are living with cancer.

It’s based on some research that showed that people with cancer felt that they still had some residual unmet needs after treatment and also a lot of people felt quite abandoned by their medical professionals once they were discharged. So it’s really a very person focused approach, where we initiate assessments along the way, holistic needs assessments, and then we also provide health and well-being events where we can attend to some of those unmet needs.

How did you find yourself in that area?

If I’m honest, in the UK it’s pretty much a must-do. We were basically given it as a target. All of our patients were going to be getting holistic needs assessment within 31 days of their diagnosis. And we would initiate a care plan from that where we were instigating nursing interventions and referrals to other professionals to help them with their unmet needs, and also that we would ensure that every man had access to health and well-being events.

So it was a big ask. It didn’t come without pain, but five years on and we’ve got a pretty good program now for our prostate cancer patients.

Is your model shared with Australia or do you think the UK is leading the way?

From people that I’ve talked to in the community here, I think Australia and the UK have got lots of similar themes in terms of survivorship. The feedback that I’ve got is that it’s quite patchy, so in some areas survivorship hasn’t really taken off yet and in others they are ploughing ahead.

I think it’s probably similar to the UK, it depends where you are and how far ahead you are with it.

When it comes to male survivorship and female survivorship, is there a divide?

That’s a really good question. I don’t know because I only deal with men.

In my hospital we have a central survivorship team, who have endeavoured to set up some cross-tumour site events, which haven’t been particularly well attended.

I certainly know with my patients, they’re very protective about their community and they have fed back over and over again that they like to be with other men with prostate cancer. We’ve tried to set up joint things and it’s not been very well-received.

That may just be our patients, and it may be something that we can work on for the future, but it’s not something we’ve been very successful with so far.

Do you feel it’s more of a need from the patient rather than what’s on offer that may be lacking?

Yes, I think so. Our survivorship program was set up based on a lot of things. We did some scoping work, looking at what the unmet needs were through questionnaires. We ran a number of focus groups and tried to get a really good representation of our patients, so we did a focus group specifically for black and African Caribbean men, because we’ve got a huge African Caribbean population where I work.

We did staff, we did patients, and we said to them, ‘What do you think would work?’ What came back over and over again was that they wanted groups where they could meet other men and other partners, and other family members with prostate cancer.

They felt really strongly that they had specific needs. There’s a real feeling in my patients that they’re special and they’ve got those particular unmet needs. A lot of it is around sex, is around [lower urinary tract] symptoms, is around masculinity, and is around how they feel as people. I think there’s a real safety for them at the moment in doing that in a prostate group.

Louisa Fleure is Lead Uro-Oncology Clinical Nurse Specialist at Guy's and St Thomas'​ NHS Foundation Trust