Make 2nds Count – Page 2 – The NEN

Secondary breast cancer advocacy initiative goes nationwide

Charity brings new hope to patients with incurable cancer

A pioneering Scottish initiative to help secondary breast cancer patients is being rolled out UK-wide.

The Patient Trials Advocate service (PTA) introduces people with the incurable disease to clinical trials which can help to improve outcomes and extend life.

Since it began north of the border last year it has received a 100% approval rating and brought fresh hope to patients living with this largely unknown type of breast cancer which kills 1000 women in the UK each month.

The initiative was developed by charity Make 2nds Count which campaigns to raise awareness of, and fund research into, secondary breast cancer – also known as metastatic, advanced or stage IV breast cancer – a form of the disease which has spread beyond the breast to other parts of the body. On average there are around 35,000 patients in the UK currently living with this form of cancer.

But there is evidence that early access to innovative new treatment options can improve the outcomes of men and women with secondary breast cancer and the bespoke service sees specialist nurses support patients and link them up with clinical trials.

The PTA scheme, which was the first of its kind in the UK, initially covered Scotland through nurses based in Edinburgh, the Borders and the Highlands. Now the team is extending the service across England, Wales and Northern Ireland.

Patients have an initial one-to-one, hour-long phone consultation with one of the nurses who advises about clinical trials and answers any queries, searches for suitable trials and supports patients in discussing them with their clinician.

“Many secondary breast cancer patients have never had a conversation with their clinician about clinical trials and we want to empower them to change that,” says PTA nurse Vivienne Wilson, a senior research nurse at Edinburgh’s Western General Hospital.

“Sourcing the right information about available trials and understanding the association complex information can be very difficult. But we aim to make every patient with secondary breast cancer aware of them and give them the knowledge and the potential to participate in trials as part of their treatment pathway.

“The Patient Trials Advocate service has been so well received that it’s a natural progression to make it available beyond Scotland and we’re delighted to be able to help people across the rest of the UK. This service really is one-of-a-kind and sharing our knowledge and guiding patients to help them explore their options is a real privilege.”

Since the service piloted last year almost 150 patients have been supported and 100% backed the initiative, with 95% saying they would talk to their clinician about the possibility of accessing clinical trials.

One of those who knows the value of a clinical trial is Edinburgh mum-of-four Lesley Stephen. Diagnosed with stage IV breast cancer out of the blue in 2014, the disease had already spread to her lungs, liver and bones.

Two years later she was told she had run out of treatment options. But she subsequently got the chance to take part in a clinical trial and is still living with the disease more than six years later.

Lesley says: “I had undergone 18 months of treatment, which was unsuccessful, when I heard of a friend who was taking part in a clinical trial. That inspired me and gave me hope that there just might be another option.

“I researched potential trials myself, which was not easy, and I realised that there was a lack of awareness. But because of the trial I took part in, I have had another six years of life I never expected to have. This just shows why the patient advocacy service is so important. People need to know that there, perhaps, is another possibility out there for them.”

To find out more about the Patient Trials Advocate service visit:

https://www.make2ndscount.co.uk/funding-research/patient-trials-advocate/

Make 2nds Count: Shining a Light on Secondary Breast Cancer

Ten Scottish Landmarks joined Make 2nds Count ‘Shine A Light’ campaign
22 venues joined the campaign, designed to highlight the lack of awareness and support available for the incurable cancer
Three in ten UK adults who are either diagnosed or know a friend or family member with secondary breast cancer felt that research and support were insufficient and not readily available for patients or loved ones

Make 2nds Count has confirmed that 22 landmarks from across the UK joined the newly launched ‘Shine a Light on Secondaries’ campaign, which has been coordinated to highlight the lack of awareness and support available across the UK for patients and their loved ones living with the incurable cancer.

On Thursday night, 13^th October 2022, venues including Camera Obscura, The Balmoral, Caird Hall and Blackpool Tower shone brightly in the charity’s colours – pink, purple and teal – as part of the national campaign designed to “Shine a Light” on Secondary Breast Cancer Day, which is often overlooked amidst the wider narrative around Breast Cancer Awareness Month (October).

The participating Scottish venues were:

Camera Obscura	Edinburgh
St Andrews House	Edinburgh
Queen Elizabeth Hospital	Glasgow
Perth Bridge	Perth
St Pauls Square	Perth
Dalkeith Country Park	Dalkeith
Caird Hall	Dundee
The Balmoral	Edinburgh
Marischal College	Aberdeen
His Majesty’s Theatre	Aberdeen

A YouGov survey commissioned this year by Make 2nds Count revealed that 29% of UK adults who are either diagnosed or know a friend or family member with secondary breast cancer felt that research and support were insufficient and not readily available for patients or loved ones.

It also confirmed that only 23% of these UK respondents asked would look to the mainstream media as a source of information and support when dealing with secondary breast cancer, whilst a staggering 59% refer to charities offering one-to-one advice and personal experience.

Heather Moffitt, a trustee of Make 2nds Count who is living with Stage 4 (metastatic) breast cancer, comments, “We desperately need people to be aware of this forgotten form of breast cancer. We need to change the narrative and raise so much more awareness around the signs and symptoms of this disease.

“Secondary breast cancer is incurable and without further research and education, this disease will continue to destroy the lives of so many. That’s why we’ve joined forces with venues across the UK to mark a moment and Shine a Light on this disease and the important work that needs to be done.”

The disease, also known as metastatic, advanced or stage IV breast cancer, is a cancer that has spread beyond the breast to other parts of the body and is incurable. On average there are around 35,000 patients in the UK currently living with this form of the disease.

Make 2nds Count is a patient and family-focused charity dedicated to giving hope to women and men living with secondary breast cancer. 

Their mission is to fund secondary breast cancer research that contributes to advancing an increased quality of life for patients; establish a community that supports and educates patients and families affected by secondary breast cancer; inform and facilitate access to patient trials and to increase overall awareness of secondary breast cancer.  

For more information or support visit www.make2ndscount.co.uk/

Make 2nds Count to shine a light on secondary breast cancer

23 venues will join campaign, designed to highlight the lack of awareness and support available for the incurable cancer
Three in ten UK adults who are either diagnosed or know a friend or family member with secondary breast cancer felt that research and support were insufficient and not readily available for patients or loved ones

Make 2nds Count has confirmed that 23 landmarks from across the UK will join the newly launched ‘Shine a Light on Secondaries’ campaign, which has been coordinated to highlight the lack of awareness and support available across the UK for patients and their loved ones living with the incurable cancer.

On 13^th October 2022, venues including Camera Obscura, Granton Gas Tower, The Balmoral, Caird Hall and Blackpool Tower will shine brightly in the charity’s colours, pink, purple and teal, as part of the national campaign designed to “Shine a Light” on Secondary Breast Cancer Day, which is often overlooked amidst the wider narrative around Breast Cancer Awareness Month (October).

Heather Moffitt, a trustee of Make 2nds Count who is living with Stage 4 (metastatic) breast cancer, comments: “We desperately need people to be aware of this forgotten form of breast cancer. We need to change the narrative and raise so much more awareness around the signs and symptoms of this disease.

Make 2nds Count is a patient and family-focused charity dedicated to giving hope to women and men living with secondary breast cancer. 

For more information or support visit www.make2ndscount.co.uk/

£12,000 donation boosts services for Secondary Breast Cancer patients

Services for secondary breast cancer patients have received an unexpected boost after a surprise donation of more than £12,000.

The cash will be used to further the work of Make 2nds Count, which campaigns to raise awareness of the little-known form of the disease, support patients and their families and fund education and research into secondary breast cancer.

Also known as metastatic, advanced or stage IV breast cancer, secondary breast cancer is an incurable cancer that has spread beyond the breast to other parts of the body. It can be treated, but around 35,000 patients in the UK are living with the disease and the death toll here is, on average, a shocking 1,000 women each month.

This significant donation comes from Challenge Breast Cancer Scotland, which has recently decided to close its operations and wanted the funds to continue to serve secondary breast cancer patients through Make 2nds Count.

Moira Adams, Trustee of Challenge Breast Cancer Scotland, said: “It was a bittersweet moment to donate all of our funds to Make 2nds Count as we finally wind up our organisation, but we are confident that the money will be sympathetically and efficiently utilised for the benefit of breast cancer patients in Scotland.

“Our thanks must go to all our friends and supporters who have generously donated to our charity over the past 30 years. We wish Make 2nds Count every success.”

Make 2nds Count was founded by mum Lisa Fleming, 38, of Edinburgh, who had no previous breast cancer diagnosis, warning signs or lump when she was told she had primary and secondary breast cancer.

Her aim is to support patients and families, educate and raise funds for research into the disease. So far her charity has raised more than £1million.

Lisa said: “While we’re incredibly sad to see the end of Challenge Breast Cancer Scotland, we’re happy to carry the torch on their behalf and to continue the great work being done to support people diagnosed with this form of the disease.

“Our lifeline comes from donations and we are committed to doing everything we can to raise awareness, fund research and improve the lives of those living with secondary breast cancer.

“This is an important and much-needed boost for our work.”

Edinburgh leads the way with breast cancer trials advocacy service

Bringing new hope to patients with the help of specialised nurses

Scotland is leading the way with an innovative service for secondary breast cancer patients.

The Patient Trials Advocate service, (PTA) is the first of its kind in the UK, and it’s bringing fresh hope to those with the incurable cancer by introducing them to clinical trials which can help to improve outcomes and extend life.

The initiative has been developed by charity Make 2nds Count which campaigns to raise awareness of, and fund research into, secondary breast cancer – a form of the disease which kills 1000 women in the UK each month but remains largely unknown.

Also known as metastatic, advanced or stage IV breast cancer, it is a cancer that has spread beyond the breast to other parts of the body and can be treated but not cured. On average there are around 35,000 patients in the UK currently living with this form of the disease.

There is evidence that early access to innovative new treatment options can improve the outcomes of men and women with secondary breast cancer and the new, bespoke service, the first of its kind in the UK, sees specialist nurses support patients and link them up with clinical trials.

The PTA scheme covers Scotland in its entirety through nurses based in Edinburgh, the Borders and the Highlands. Patients have an initial one-to-one, hour-long phone consultation with one of the nurses who can advise about clinical trials and answer any queries, search for suitable trials and support patients in discussing them with their clinician.

“We know that many secondary breast cancer patients have never had a conversation with their clinician about clinical trials and we want to empower them to change that through our PTA service,” says PTA nurse Vivienne Wilson, a senior research nurse at Edinburgh’s Western General Hospital.

“We want to ensure that every patient with secondary breast cancer has the knowledge and the opportunity to discuss trials as part of their treatment pathway.

“I’m delighted that the Patient Trials Advocate service is now being expanded to include the whole of Scotland. I’ve been working with Make 2nds Count for over a year now and I think this service really is one of a kind. I enjoy the opportunity to talk to many secondary breast cancer patients, sharing my knowledge with regards to available trials and guiding them to explore their options.”

Since the service piloted last year more than 100 patients have been supported. Of those, 100% backed the initiative and 95% said they would talk to their clinician about the possibility of accessing clinical trials.

One of those who knows only too well the benefits of a clinical trial is Edinburgh mum-of-four Lesley Stephen. Diagnosed with stage IV breast cancer out of the blue in 2014, the disease had already spread to her lungs, liver and bones.

Two years later she was told she had run out of treatment options. But she subsequently got the chance to take part in a clinical trial and is still living with the disease six years later.

“I researched potential trials myself, which was not easy, and I realised that there was a lack of awareness. But because of the trial I took part in, I have had another six years of life I never expected to have. This just shows why the patient advocacy service is so important. People need to know that there perhaps, is another possibility out there for them.”

Make 2nds Count was founded by mum Lisa Fleming, 38, of Edinburgh, who had no previous breast cancer diagnosis, warning signs or lump when she was told she had secondary breast cancer.

Her aim is to support patients and families, educate and raise funds for research into the disease. So far the charity has raised more than £1million.

To find out more about the Patient Trials Advocate service visit:

https://www.make2ndscount.co.uk/funding-research/patient-trials-advocate/

Edinburgh Secondary Breast Cancer Charity Ball Raises Over £90,000

Vital research to benefit from Make 2nds Count fundraiser

Revellers at a glamorous Great Gatsby Ball have raised more than £90,000 to support vital research into a forgotten form of breast cancer.

The gala event, at Edinburgh’s Prestonfield House, was organised by leading UK charity Make 2nds Count which campaigns to raise funds and awareness of secondary breast cancer which kills 1000 woman a month.

The charity, which helps to finance various crucial research projects, also supports patients and families and educates and informs about the little-known disease.

The ball, on March 25, was hosted by STV’s Laura Boyd and brought the Scottish business community together for an evening of fine dining, live entertainment and auction prizes.

The live and online auctions, which included prizes of a three-night city break to Lisbon and an Icelandic Northern Lights adventure for two people, raised a combined £31,664, while ‘Crack the Code’ – where participants were invited to guess the winning combination to win a stunning diamond necklace donated by Rox Edinburgh and the Grimes family – and ‘The Gift Tree’ boosted the cause by another £8,010.

Two incredibly generous anonymous donations of £10,000 each and ticket sales of over £30,000 pushed numbers towards the final sum of £90,274, to the delight of organisers and the sponsors – headline sponsor Copart UK Ltd and table sponsors Bruce Tait Associates, Saltire Roofing, Erskine Financial, David Rankin, Lamborghini Edinburgh and Sutherland Independent.

Make 2nds Count founder Lisa Fleming of Edinburgh said: “We are absolutely thrilled with the fantastic result we’ve achieved. Every penny raised will be invaluable to boost much-needed research into the disease and offer support to more and more patients and families.

“We not only had an incredible evening, but we come away from the experience with the knowledge that we can and we will continue to raise awareness and that the work we do can make a real difference to people’s lives across the UK.”

The little-known, incurable cancer – also known as metastatic, advanced or stage IV breast cancer – is a cancer that has spread beyond the breast to other parts of the body. On average there are around 35,000 patients in the UK currently living with this form of the disease.

Lisa set up Make 2nds Count after being diagnosed with secondary breast cancer. She had no primary diagnosis, warning signs or lump when she was told the disease had already spread to the majority of her bones. It swiftly spread to her brain and she is living with a life sentence.

For more information about Make 2nds Count and the work they do, please visit:

https://www.make2ndscount.co.uk

Loose Women’s Carol McGiffin becomes breast cancer ambassador

Chat show star and breast cancer survivor raises awareness of forgotten disease

Loose Women star and breast cancer survivor Carol McGiffin has been appointed as an ambassador for a charity highlighting a forgotten form of the disease.

The outspoken broadcaster, who underwent a year of treatment after her own diagnosis, will represent Make 2nds Count, which campaigns to fund research into secondary breast cancer and support patients and their families.

And her big personality and fearless opinions are set to raise the profile of the little-known, incurable cancer which kills 1000 women a month.

Secondary breast cancer – also known as metastatic, advanced or stage IV breast cancer – is a cancer that has spread beyond the breast to other parts of the body. On average there are around 35,000 patients in the UK currently living with this form of the disease.

Carol was diagnosed with the aggressive and highly-invasive triple negative form of breast cancer in 2014, the year after she came an impressive fourth in Big Brother.

Following successful treatment, she passed her five-year remission milestone in late 2019. But her cancer was not suitable for treatments like Herceptin and Tamoxifen which can help to prevent the disease returning. As a result, she is well aware of the feelings that can provoke.

She said: “I am constantly aware and fearful of secondary cancers that might not be obvious early on but can never be cured. I monitor my health religiously and attend checks all the time. But I’m concerned at the lack of awareness of secondary breast cancer and of this brilliant charity which does so much to help women who are suffering.”

Carol learned of Make 2nds Count, which recently celebrated raising its first £1 million, when it supported a live tour she was taking part in and is now passionate about promoting its work: “Even though secondary breast cancer is incurable, early detection is still key and treatment more likely to preserve a decent and longer life.

“So, it’s vital that more people are aware of the disease and informed about the support, information and initiatives like patient trials that Make 2nds Count promotes.”

Make 2nds Count founder Lisa Fleming of Edinburgh said: “Having Carol on board is fantastic and gives us a really vibrant, authentic voice. She’s got the lived experience and can identify exactly with what we are trying to do and the anxieties patients face. We’re really looking forward to working together to raise the profile of the disease and our work.”

Carol started her media career at Music Box, precursor to MTV, and later co-presented a weekend morning radio show with her former husband Chris Evans. She went on to become a producer on the Big Breakfast before moving on to Talk Radio and, subsequently, other radio work. In 2000 she joined the Live Talk panel – Loose Women by another name – and, barring a five-year break in 2013, has been there ever since.  

She had a lifelong dream to live in France and in 2016, motivated by the cancer diagnosis, sold her London flat and bought a house near Nice where she lives with her now husband Mark, travelling back to the UK to do Loose Women.

Make 2nds Count charity raises £1million for forgotten cancer

Secondary breast cancer charity Make 2nds Count has a million reasons to mark the occasion after reaching a phenomenal fundraising milestone.

Hitting the £1 million mark is bringing hope to those living with the forgotten form of cancer through financing vital research at universities across the UK and providing much-needed support for patients and families.

The disease – also known as metastatic, advanced or stage IV breast cancer – is an incurable cancer that has spread beyond the breast to other parts of the body. It can be treated but, on average, there are around 35,000 patients in the UK living with secondary breast cancer and the death toll here is a shocking 1000 women a month.

Make 2nds Count founder Lisa Fleming, 38, of Edinburgh, set up the charity in 2018 and says: “Reaching our £1million fundraising milestone is just the most exciting start to what we predict will be another productive year for us.

“And while we look forward to achieving so much more, I’d like to say a huge thank you to everyone who has helped us reach that phenomenal million-pound total. Our supporters really do provide a lifeline and without them we would be unable to make the progress we have accomplished in raising awareness of this disease, in funding dedicated research and in facilitating projects like access to patient trials. Every contribution and donation are enormously appreciated.”

The £1million milestone was reached thanks to activities including an Inaugural Gala Ball at Edinburgh’s Prestonfield House Hotel and £500,000 from individual fundraisers who took part in events from abseiling off the Forth Rail Bridge to skydiving, trekking the Arctic, running 12 marathons in 12 days and walking 500 miles.

The UK-wide charity focuses on patients and families of women and men living with secondary breast cancer and among its biggest achievements has been donating £270,000 in research funds to the Universities of Edinburgh, Warwick, Liverpool and Sussex.

It also launched the Patient Trial Advocate Service, in partnership with NHS Lothian, last year which has already helped 65 patients gain vital information about clinical trials.

Other initiatives supported by the fundraising include: the first 2nds Together Wellbeing Retreats giving patients a much-needed relaxing break from treatments; a virtual Wellbeing Week with sessions led by industry experts; and littlelifts boxes, packed full of mood-boosting goodies and practical products to support women undergoing breast cancer treatment.

One of those to benefit is Make 2nds Count patient champion Tricia. She says: “I don’t know how I would have coped without Make 2nds Count and the support services I have been able to access.

“There is nothing like it where I live in the Scottish Highlands. The Tea and A Chat has been a lifesaver for me – being able to talk to others who ‘get it’ is so important.

“And the Wellbeing Week gave me a much-needed boost, so much fun and very informative. It’s difficult put into words what the retreat meant to me. To meet in person others I’ve only met on zoom was incredible. The love and support I felt from the group were inspiring.”

Lisa set up Make 2nds Count after being diagnosed with secondary breast cancer. She had had no primary diagnosis, warning signs or lump when she was told the disease had already spread to the majority of her bones. It swiftly spread to her brain and she continues to live with the disease – knowing it is also a death sentence.

Donations to help the charity provide more support, education and research funds come from a variety of sources including individual and corporate fundraising, legacies, the Make 2nds Count Lottery and the annual Make Christmas Count campaign.

To find out how to contribute go to https://www.make2ndscount.co.uk/get-involved/ and https://www.make2ndscount.co.uk/donate .

Secondary breast cancer charity Make 2nds Count appoint new CEO

Chief Executive Officer Anne Gibson to elevate reputation and leverage growth

Secondary breast cancer charity Makes 2nds Count is off to a flying start in 2022 with the appointment of a dynamic Chief Executive Officer.

Accomplished in leadership roles across a range of sectors, Anne Gibson brings a wealth of Third Sector experience and will support further growth as Make 2nds Count continues to champion research and education in the field of what is often regarded as the forgotten cancer.

Anne Gibson will lead development of a three-year strategic plan to elevate the charity’s reputation as a key player in improving quality of life for patients through its research activities, supporting patients and families and enhancing awareness of the disease.

She has worked in leadership roles across local and national government, the Third Sector and the independent care and education sectors. She was an HM Inspector of Education and has worked in partnership with the Care Inspectorate and with Audit Scotland.

Her skills and expertise include organisational development, continuous improvement, quality assurance, building leadership, community engagement and participation and developing partnership. Anne currently sits on a number of Boards including a non-executive Director role with NHS 24.

Anne said: “The most important thing we can give to patients and their loved ones is hope.

“Make 2nds Count is already making a tangible difference to those living with the disease, and their families, through its inspiring support and research initiatives. However, more education, support and research is still needed and I’m delighted to be part of such a passionate team with huge aspirations to deliver that this year.”

Make 2nds Count founder Lisa Fleming, 38, of Edinburgh, says: “Having Anne on board will be transformational for us as we drive the charity forward and evolve.

“Her appointment is just the most exciting start to what we predict will be a very constructive year for us. We’ve already come so far but we look forward to achieving so much more in 2022.”

Lisa set up Make 2nds Count after discovering she had both primary and secondary breast cancer. She had had no previous breast cancer diagnosis, warning signs or lump when she was told the disease had already spread to the majority of her bones. It swiftly spread to her brain and she continues to live with the disease – knowing it is also a death sentence.

Tree of Hope to boost secondary breast cancer research

Buy a bauble and help fund vital studies and support patients

Edinburgh residents are being invited to join a joyous festive fundraising campaign to support people living with secondary breast cancer.

Charity Make 2nds Count has launched its inspiring Tree of Hope initiative, giving people the chance to donate by buying a Christmas bauble which will not only become a gorgeous decoration for the tree but can also be a beautiful tribute to a current patient or a lost loved one.

The aim is to raise £15,000 in a national Tree of Hope campaign to fund more new and dedicated research into secondary breast cancer, a disease that kills 1000 women a month in the UK.

Two Christmas Trees of Hope are located in Edinburgh, in McLarens on the Corner in Morningside Road and in the Cold Town House in The Grassmarket – venues of the Signature Group hospitality collection which is supporting the fundraiser by hosting the trees and donating a percentage from a special dish served in its various locations.

Both real and virtual baubles are available to purchase, with donors receiving their personalised decoration as a keepsake in January. Individual Baubles of Hope are £25 with corporate Baubles of Hope available for £100.

The initiative is part of the charity’s Make Christmas Count campaign to highlight secondary breast cancer. Also known as metastatic, advanced or stage IV breast cancer, it is a cancer that has spread beyond the breast to other parts of the body. On average there are around 35,000 patients in the UK currently living with this form of cancer.

Emma Hall, Head of Fundraising and Engagement, Make 2nds Count, says: “Every family has cherished decorations that come out every year, baubles that mean something poignant to them personally, and this is just a lovely way of sharing a bit of that special Christmas spirit with others.

“It really is the most wonderful time of the year and we’re confident that people will embrace our message of hope this festive season by taking the opportunity to add some sparkle to our trees and to boost our research funds.”

Siobhán Leith, Head of Sales and Marketing, Signature Group adds: “Signature Group is delighted to be supporting Make 2nds Count for the second year.

“We’re so grateful to the six venues in our group who are hosting the Trees of Hope in order to be a voice within our communities. The work that this charity does is so important and we’re proud to be able to help raise awareness and funds through this fun and meaningful initiative.”

Make 2nds Count founder Lisa Fleming, 38, of Edinburgh, had no previous breast cancer diagnosis when she learned she had primary and secondary breast cancer (SBC) in 2017. It is in the majority of her bones and brain. She says the value of donations cannot be underestimated.

“Last year, the first year of our Tree of Hope campaign, we had an amazing response and outstripped our £10,000 target by several thousand pounds so we’re aiming a bit higher this year.

“The generosity of those who contribute to our fundraising has allowed us to make several important grants to researchers and donations from our trees will fund even more new and innovative projects, maintaining our mission to give hope to patients and their families affected by SBC, particularly at this special festive time.”