Lucy Hunter

Writing. Editing. Eating. Drinking.

[Lucy Hunter @lucyhunterlam]

@CliveEfford please be there! 🙏🏼

[Peter Stefanovic @PeterStefanovi2]

🚨VERY IMPORTANT!

THIS THURSDAY MPs will be holding a debate on incurable secondary breast cancer.

It will be a chance for MPs to raise important issues around data collection and access to life-extending treatments.

PLEASE TAG/EMAIL YOUR MP AND ASK THEM TO BE THERE🙏❤️

@sophieRblake @BreastCancerNow @CliveJonesMP @marykfoy @KayBurley

[Lucy Hunter @lucyhunterlam]

Hi @CathLoveday I've sent you an email - it would be great to get your input for an article I'm writing - in case y message has got lost in the ether, I'm on [email protected]

[Jo Taylor BEM @abcdiagnosis]

It is with enormous sadness that Jo Taylor, an amazing wife and mum passed away peacefully, surrounded by her family at 8:18am on Monday 3rd of November.

Please allow her family some privacy to grieve together.

#IAmThe31

#BusyLivingWithMets
#SecondaryBreastCancer
#MetastaticBreastCancer
#DarkerPink
#DyingForACure

[METUPUK @METUPUKorg]

The Fabric of Our Lives.

Metastatic Breast Cancer (MBC) devastates everything it touches.
Your plans. Your body. Your sense of safety.
It tears through families and futures, leaving behind pieces that can never be put back the same way.

It’s not just the diagnosis - it’s every scan, every sleepless night, every conversation that starts with “I’m sorry, there’s been progression.”

We grieve while we live.
We hope while we hurt.
We smile through the devastation because that’s what strength has come to mean.

But strength shouldn’t be survival alone.
We need better treatment options, earlier access, and more compassion for the reality of MBC.

Stand with us. Share this. Help rebuild the system that keeps letting us fall apart.

#FabricOfOurLives #BCAM25 #BreastCancerAwarenessMonth #BCAM #SeverityModifier #METUPUK #DarkerPink #BusyLivingWithMets #IAmThe31 #waitingroomfeet #BreastCancer #BreastCancerCommunity #BreastCancerJourney #BreastCancerSupport #DyingForACure #EarlyDetectionSavesLives #MetastaticBreastCancerAwareness #SecondaryBreastCancer #SecondarySisters #Stage4NeedsMore #StageIVNeedsMore #AdvancedBreastCancer

[METUPUK @METUPUKorg]

Stills from our silent protest.

Outside Parliament, we stood together - patients, advocates, and allies - to demand change for everyone living with Metastatic Breast Cancer (MBC).

We stood for better treatment access.
We stood for real data collection.
We stood for the 31 women who die every day from MBC.
And we stood for those still waiting - for progress, for visibility, for hope.

#FabricOfOurLives #METUPUK #MBCDay #BCAM25 #DarkerPink #IAmThe31 #Stage4NeedsMore #StageIVNeedsMore #BusyLivingWithMets #MetastaticBreastCancer #SecondaryBreastCancer #AdvancedBreastCancer #BreastCancerAwareness #BreastCancerCommunity #BreastCancerSupport

[Lucy Hunter @lucyhunterlam]

Hi @tabamatu would you be able to email me on [email protected] to have a chat about me interviewing you for a magazine feature? Thanks!

[METUPUK @METUPUKorg]

Laura Ashurst is a mindfulness meditation teacher, and wellbeing practitioner who has been living with Metastatic Breast Cancer for 17 years.

She’s recorded a guided meditation for our community - something you can save and return to whenever you need a moment of calm and focus.

We know that alongside treatment, mental wellbeing is just as important. We hope this helps provide support whenever it’s needed most.

#MetastaticMay #METUPUK #BusyLivingWithMets #MBCWellbeing #PatientVoice #Mindfulness #MindfulnessMeditation #SecondaryBreastCancer #LivingWithMBC

[Marissa Holzer @rissiekins]

Metastatic breast cancer, also called MBC, turned my life upside down 11 years ago this week.

Today I celebrate my 11th “I’m Still Here Day.”

[Lucy Hunter @lucyhunterlam]

@Raj_Bisram hi there, I’ve sent an email via your management company. Could you get in touch? Thanks!

[METUPUK @METUPUKorg]

Halfway through our #MBCDataWeek and we are digging down into treatment data to see what’s behind the infographics for NAoMe. The timeframe this data applies to is 2019-2021. Any data from 2020-21 overlaps with the covid-19 pandemic when the NHS was under pressure. All data collected during the pandemic must be treated with caution.

Looking at the incompleteness of data, only patients with de-novo MBC living in England were included in the CDK4/6 inhibitor and anti-HER2 treatment infographics. No patients in Wales and no patients at all with recurrent breast cancer (which is the majority). We know MBC is different in de-novo patients compared to recurrent patients from studies in other countries. On average de-novo patients do better than recurrent patients.

The chemotherapy infographic includes patients from England and Wales with de-novo MBC. It also includes some patients from England with recurrent breast cancer (where data was available). Because the recurrent data is so incomplete that it cannot be trusted. Why? Because we do not know if there was a selection bias to explain why some recurrent patients were counted and others were not.

On a positive note, the infographic for HER2-positive MBC is what we would expect. Around 8/10 patients received anti-HER2 treatment, with rates highest in younger patients and lower in the elderly.

For CDK4/6 inhibitors only 4/10 patients were recorded. We would expect this to be higher now. At the time of data collection the treatment was new and only available at first line. Low uptake could be explained by:

· Patients ineligible because they have received too many treatment lines
· Oncologists not wanting to use a treatment which suppresses immunity during the Covid pandemic

Only 4/10 patients were recorded as receiving chemotherapy. We would expect this to be higher, particularly in younger patients. However, in patients with ER-positive MBC chemo is less effective than hormonal treatments so it isn’t always used.

Reference: den Brok, W.D., Speers, C.H., Gondara, L. et al. Survival with metastatic breast cancer based on initial presentation, de novo versus relapsed. Breast Cancer Res Treat 161, 549–556 (2017). https://t.co/q6ud7GmLSn

#MBCdata #NAoMe #NATCAN #METUPUK #DarkerPink #BusyLivingWithMets #IAmThe31 #BreastCancer #BreastCancerCommunity #BreastCancerJourney #BreastCancerSupport #DyingForACure #MetastaticBreastCancer #SecondaryBreastCancer #SecondarySisters #Stage4NeedsMore #StageIVNeedsMore #AdvancedBreastCancer

[Madeleine Meynell #IAmThe31 @madmeynell]

Cancer patients have a particularly high burden of healthcare admin, whether it’s chasing appointments which haven’t been made or being sent appointment letters after the appointment date.
@METUPUKorg
#METUPUK
#MetastaticBeastCancer
#SecondaryBreastCancer
#BusyLivingWithMets

[Madeleine Meynell #IAmThe31 @madmeynell]

Congratulations Ann on driving forward this important work. Patient advocacy at its best.
Julie Lillis lost her life to metastatic breast cancer at a very young age, but in her short time she also made such a difference.

This work shows we can be counted.

[Jo Taylor BEM @abcdiagnosis]

It is with immense pride and a great whoop of joy that the directors of After Breast Cancer Diagnosis (ABCDiagnosis) announce the recognition of their founder, Jo Taylor, in the King's New Year Honours List 2025.

Jo, our Founder, is to receive a BEM – British Empire Medal, for services to patient advocacy with the 2 organizations: CIC (Community Interest Company) ABCDiagnosis and the charity METUPUK (which she also founded).

Jo was diagnosed nearly 11 years ago with metastatic (secondary) breast cancer, an incurable disease, 7 years after being told she was cured of early stage breast cancer which she developed when she was only 38, on maternity leave with her 5 month-old daughter, and a 20-month-old son. It was a huge shock 7 years later being re-diagnosed with this incurable disease. This personal tragedy has driven Jo’s ambition to support other patients going through the same experience – hence the creation of ABCDiagnosis.
Jo has expressed how proud she is for receiving this award for the work that she has done, initially via the ABCDiagnosis website. The site is the only patient-led “one stop shop”, which signposts information and promotes the patient voice. Her regular blogs, also raise awareness of metastatic breast cancer and includes the “red flag signs and symptoms” infographic, which she developed over 8 years ago in response to a lack of understanding and awareness.

ABCDiagnosis has since expanded to provide residential motivational retreats which Jo has managed and developed over the last 7 years. More recently ABCDiagnosis created the patient-led Nordic Walking groups around Greater Manchester training over 10 Instructors who now deliver these walks for breast cancer patients. Thousands of patients and their relatives, locally, nationally and world-wide have benefited from ABCDiagnosis.

The award also recognises Jo as founder member of METUPUK, the only patient advocacy group in the UK focusing on MBC, which she set up because secondary breast cancer patients were ignored and invisible. They still are, but through METUPUK’s work carried out by amazing volunteers and advocates this is set to change. Jo is determined that metastatic breast cancer patients will be heard, supported and counted whilst alive and not only captured within mortality figures.

We wish Jo all the best in the work she continues to undertake on behalf of the breast cancer community despite the difficulties she faces with her own health. We are extremely proud to support her in her endeavours.

The Directors of After Breast Cancer Diagnosis

[Lucy Hunter @lucyhunterlam]

Congrats @abcdiagnosis https://t.co/EOzbOzbjqh

[METUPUK @METUPUKorg]

On behalf of all the Trustees, volunteers and supporters of METUPUK, we would like to offer our heartfelt congratulations to our Founder, Jo Taylor, for being awarded the British Empire Medal in The King's New Year Honours List 2025. A much deserved recognition for years of work in improving outcomes and quality of life for patients with breast cancer.

Jo was diagnosed with breast cancer in 2007 at the age of 38, months after giving birth to her second child. After diagnosis, Jo was shocked by the lack of information on reconstructive surgical options for patients with breast cancer. To address this gap, she created the website After Breast Cancer Diagnosis (ABCD). Jo later added information on diet and exercise and set up residential Exercise Retreats for patients with a diagnosis of primary or metastatic (secondary) breast cancer.

When Jo was diagnosed with metastatic breast cancer (MBC) in 2014 she once again became aware of lack of information being provided to patients. Although 30% of patients develop MBC, sometimes years after primary breast cancer, women were not being informed about what to look out for. Jo designed a Red Flag Infographic aimed at patients with a history of primary breast cancer to show the signs and symptoms of MBC. These Infographics are now signposted throughout the NHS.

In 2016, Jo founded METUPUK after connecting with patient advocates in the USA. At first it was a loose coalition of likeminded patients campaigning for improvements in outcomes. In 2021 METUPUK became a registered charity, the only UK charity solely dedicated to patient advocacy for MBC. The four main areas of focus are increasing awareness of the signs and symptoms of metastatic breast cancer, increasing access to innovative treatments, improving information and access to clinical trials and improvements in data collection.

We are very lucky to have Jo as our Founder and Chair of Trustees. Thank you for all your hard work.

[The James McMahon Music Podcast @jamesjammcmahon]

James McMahon
3rd July 1980 - 14th November 2024

Words by @ConorMcNicholas

Please consider donating in his memory at https://t.co/YCTqHq7c7E

[Lucy Hunter @lucyhunterlam]

This is my sister. Her first degree is biology and for her second degree in optometry - completed when undergoing treatment for primary breast cancer - she got a first.

Even with the toll of secondary breast cancer, she is still formidable. #Proud #WhoReallyCares #DarkerPink

[METUPUK @METUPUKorg]

"Chemo brain is real". Madeleine has beeen living with #MetastaticBreastCancer for six years and talks about the toll that years of often brutal chemotherapy treatment has taken on her body and mind and the erosion of her sense of self.

Have a read of her blog here https://t.co/gO9I4wYUDC

#WhoReallyCares #BreastCancerAwarenessMonth #BCAM #costofliving #severitymodifier #METUPUK #DarkerPink #BusyLivingWithMets #IAmThe31 #waitingroomfeet #BreastCancer #BreastCancerCommunity #BreastCancerJourney #BreastCancerSupport #DyingForACure #EarlyDetectionSavesLives #MetastaticBreastCancerAwareness #SecondaryBreastCancer #SecondarySisters #Stage4NeedsMore #StageIVNeedsMore #AdvancedBreastCancer

[METUPUK @METUPUKorg]

Kit was very vocal (and sweary - no wonder...) about her #MetastaticBreastCancer diagnosis and wrote many blogs about her experience of living with the disease and the issues that she experienced. Here she speaks about the fear, loss, heartbreak, rage and fury that she felt and that many of us can understand today. She also talks about the positives with the optimism she felt being a volunteer and campaigner for METUPUK.

Her blog is here https://t.co/ILspOe7DrU

#WhoReallyCares #BreastCancerAwarenessMonth #BCAM #costofliving #severitymodifier #METUPUK #DarkerPink #BusyLivingWithMets #IAmThe31 #waitingroomfeet #BreastCancer #BreastCancerCommunity #BreastCancerJourney #BreastCancerSupport #DyingForACure #EarlyDetectionSavesLives #MetastaticBreastCancerAwareness #SecondaryBreastCancer #SecondarySisters #Stage4NeedsMore #StageIVNeedsMore #AdvancedBreastCancer

[METUPUK @METUPUKorg]

Helen, a mum of 3 girls, talks about her anxiety of living with #MetastaticBreastCancer and the pain she felt was excruciating. She realized self advocating was the only way she was able to deal with her diagnosis and found volunteering for METUPUK was the support

Here's a link to the blog https://t.co/Qt3tm5dteP

#WhoReallyCares #BreastCancerAwarenessMonth #BCAM #costofliving #severitymodifier #METUPUK #DarkerPink #BusyLivingWithMets #IAmThe31 #waitingroomfeet #BreastCancer #BreastCancerCommunity #BreastCancerJourney #BreastCancerSupport #DyingForACure #EarlyDetectionSavesLives #MetastaticBreastCancerAwareness #SecondaryBreastCancer #SecondarySisters #Stage4NeedsMore #StageIVNeedsMore #AdvancedBreastCancer

[METUPUK @METUPUKorg]

After receiving the 'all clear' following primary breast cancer treatment in 2019, Nicky's life was turned upside down when a scan for suspected appendicitis revealed that she had #MetastaticBreastCancer. She explains why our Red Flag Infographic of MBC symptoms should be shared far and wide...

Have a read of her blog https://t.co/zHyapYdrT4

#WhoReallyCares #BreastCancerAwarenessMonth #BCAM #costofliving #severitymodifier #METUPUK #DarkerPink #BusyLivingWithMets #IAmThe31 #waitingroomfeet #BreastCancer #BreastCancerCommunity #BreastCancerJourney #BreastCancerSupport #DyingForACure #EarlyDetectionSavesLives #MetastaticBreastCancerAwareness #SecondaryBreastCancer #SecondarySisters #Stage4NeedsMore #StageIVNeedsMore #AdvancedBreastCancer