Inspiring breast cancer panel highlights need for ‘crucial conversations’ at Novartis online event

By Jacqui Thornton, Health Journalist and Moderator

*This article was commissioned and funded by Novartis Pharmaceuticals UK Ltd

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A panel of women advocating for ‘crucial conversations’ around breast cancer was hosted by Novartis UK country President Marie-Andrée Gamache on World Secondary Breast Cancer Day in an emotional, honest and uplifting event.

The 90-minute session, held at a studio at the Future Dreams house in central London, heard heart-breaking stories and frank advice on communicating difficult topics from women who currently or previously have been treated for the disease. It explored how the life sciences industry and the wider healthcare system can partner and work together for better patient outcomes.

The panel included ambassadors from the Moments That Count campaign, created by Novartis, with additional insights from medical oncologist, Dr Ellen Copson, of University Hospital Southampton NHS Foundation Trust, and Ms Gamache.

The event was split into three parts: first the personal experiences of Lisa Fleming, who has metastatic disease, and Juliet FitzPatrick and Helena Boyce, who have both previously been treated for primary breast cancer; second, the crucial conversations needed in the wider healthcare system; and third, what these conversations look like as the NHS engages in wider collaboration with industry.

Tackle lack of awareness?

Lisa shared that she was diagnosed with primary and secondary cancer at the same time aged just 33, when she had a four-year old son. At the time she had not heard of metastatic cancer and said there needs to be more awareness of the signs and symptoms of the secondary (metastasised) form of the disease in the public. “There's a real lack of education out there about the fact that this form of breast cancer exists, and for me, that's the most crucial conversation that needs to happen,” she said.

Lisa said another difficult conversation that must be had, however difficult, is around intimacy. She and her husband had no idea that medical treatments would lead to problems with their sex life, affecting their mental health.

Listen to patients

Blogger and writer Juliet FitzPatrick told how she was diagnosed after a routine mammogram and was immediately pushed to have a reconstruction. Upon thinking about it she realised she did she not want to go down that route and in fact she wanted a second mastectomy so was ‘fully flat.’ Her surgeon was ‘not receptive’ and made her feel ‘small and stupid.’ However, she pressed for it and finally succeeded in her wish.

She said: “I really feel that it's a conversation that needs to be had so that we can make shared decisions together on our treatment.” She now volunteers with charity Breast Cancer Now on a peer-to-peer support line to advise others.

Helena Boyce, a dance and fitness instructor, and member of Black Women Rising, a cancer support project, said when she lost her hair due to chemo, her wig specialist could not find one which represented her hair and used the expression ‘coloured lady.’ On another occasion when being shown a catalogue of women post-surgery, all the models were white. These she said were crucial diversity issues that needed to be addressed.

She also highlighted the mental health issues that affected her, particularly after treatment ended, which she had not been told to expect. She felt alone and suffered post-traumatic stress disorder.

Tailoring info to patients

In the second part, Dr Copson highlighted the many conversations she needs to have with a wide range of health professionals – not only surgeons, specialist nurses, pathologists and radiologists, but also primary care and community pharmacists.

She said doctors sometimes worry about giving too much information at the time of diagnosis but acknowledged some women will want more. She said: “The real secret is making sure that there are opportunities for people to digest the information, to come up with questions and to come back – not one-off appointments but a series of conversations over time to help us give people the right information.”?

Juliet agreed. “The doctors may be drip feeding information, so not to overwhelm the patients but I think that has to be led by the patients as we are all different.” Lisa added that it’s different again when it comes to metastatic disease. “Perhaps we don't have the time on our side to allow some conversations to be drip fed.”

Marie-Andrée expanded on how Novartis has been working with Breast Cancer Now for two years to enable therapist-led discussion with multiple patients around such issues as intimacy, discussing cancer with children and more.

Understanding the patient voice

In the third section on wider collaboration, Dr Copson said there should be more education for HCPs on how to have these conversations, potentially virtually, highlighting the importance of understanding the patient voice. Marie-Andrée added that this should be at the research level too, with clinical trials having patient input. Life sciences have a role with tackling access and health inequalities working together with patients in the NHS, she said.

The session also heard from two Moments That Count Ambassadors, Mary Huckle and Laura Middleton-Hughes, both of whom live with secondary breast cancer.

Education on red flag symptoms

Mary said it was vital that oncologists made it clear to women that metastases may occur, and GPs should look for red flag symptoms in former breast cancer patients.

Laura, who was 25 when first diagnosed and 28 when it spread, said: “If you get a pain and you've already had a diagnosis, push to get that scan. Don't be told that it's nothing, don't be told you’re too young. We can all learn from that and if we all know a bit more then hopefully, over time, it will help the conversation.”

After a lively Q&A, at the end of the session the panellists agreed that it was vital that women with primary cancer, GPs and the public know about the ‘red flag’ signs that indicate advanced disease.

Finally, Marie-Andrée Gamache skilfully summed up what she described as a ‘very powerful discussion’ encouraging women and their loved ones to have these conversations.

She said it was vital for the whole community to be educated on these issues and for the wider healthcare system to work together to make this happen.

She said: “I heard loud and clear the need to find your community, to have these conversations, is really important. And the other part is education, from the GP to the oncologist to the patient, during and after treatment. First and foremost, we have had this event, which will encourage these crucial conversations.”

For more information visit momentsthatcount.co.uk.