The Big ImpaCt Campaign Brochure 2022

For most of us, the pandemic is now firmly in the past. Whilst there is no doubt that the economic and psychological effects will last for many years to come, we are no longer living at arm’s length from our friends and family; and day-to-day life has returned to normal.

One of the greatest blessings in life is our tremendous ability to forget. It allows us in the most part, to move on from past experiences of pain and suffering, as well as to remain positive about our future. It is that renewed feeling of immortality which allows us to live our lives to the fullest.

Unfortunately for so many people, they are not so fortunate. The pandemic has sparked an acute crisis in undiagnosed diseases, the magnitude of which has only started to unfold.

The 18 months of diagnosis and treatment delays have led to more intensive shortterm disease management and poorer long-term outcomes.

Over the last year alone, the number of patients Chai is supporting has increased by a record 26%. This includes a 63% rise in appointments for children, and a 33% rise in counselling appointments - all in a single year.

The demand for Chai’s services is now greater than ever, and we need your help to safeguard the future of Chai, in the face of even greater demand.

As always, I am enormously proud of our incredible Chai Dinner Brochure Committee. We have managed yet again, within a few short weeks, to put together an incredible brochure. A very special thank you to all of our corporate and personal sponsors for their incredible generosity.

Please take special note of the brochure sponsors and advertisers, and make a point of showing them your support.

On behalf of Chai, the patients and their families - thank you for making an Impact.

Message from our Brochure Chairman

Elli Morris

Wishing Chai continued success James Shulman

Proud Supporter of Chai Cancer Care

With best wishes

in honour of Louise Hager

Romie & Esther Tager

Her Royal Chai-ness

Proud to support this wonderful cause

With you since 1974.

We’re the property finance experts making common-sense lending decisions for nearly 50 years.

Any property used as security, including your home, may be repossessed if you do not keep up repayments on your mortgage or any other debt secured on it.

"how grateful we are for the good work of Chai"

The Lauffer Family

is proud to support the amazing work of Louise and everyone at Chai Cancer Care

Creating workspaces that help businesses work smarter

Mark Isaacs, Michael Gabel and our staff are proud to support Chai

With all good wishes Vaxtor

"how grateful we are for the good work of Chai"

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furniturefusion.co.uk

We listen, we interpret, we deliver. Discover a range of contract furniture products and bespoke design service solutions to bring your vision to life.

We wish Chai Cancer Care every success for the future

Agua Fabrics Ltd

Proud

The Directors of Kerrington Growth would like to wish Chai the best with the Big Impact campaign

CANCER’S DOMINO EFFECT

I

t’s now nearly three years since the world shifted into a new state of being because of Covid-19. When all that we took for granted as routine and predictable was turned upside down and thrown into disarray.

I could easily write the above sentences, replacing Covid-19 with the word ‘cancer’ and the same would apply. A world so familiar, now suddenly strange, full of unknowns about the present and the future, interrupted by medical interventions, new demands and restrictions. Many of the clients we currently see at Chai are carrying the impact of both a cancer diagnosis and the consequences of Covid-19.

The NHS is under enormous pressure as it tries to cope with the pandemic aftershocks and a shortfall of 100,000 staff. According to July 2022 statistics from Cancer Research UK, one million fewer screening

invitations were sent out in 2020, compared to 2019. There has been a 44.1% drop in the number of women aged over 45 screened for breast cancer. One million people are currently waiting for diagnostic tests. The number of people who were able to see a specialist within 14 days of an urgent suspected cancer was 83.2%, well short of the NHS target of 93%, last met in May 2020.

These hard statistics do not make for easy reading when translated into what that means for a real person: a delayed screening or diagnosis may mean a cancer has progressed from stage one or two to stage three or four by the time treatment begins. The backlog of surgical procedures in the NHS can result in a patient being gowned up and prepped for surgery only to have their operation cancelled at the very last minute. It happens.

The pandemic may be receding but there is a legacy that isn’t disappearing so easily. CEO Lisa Steele explains the impact of delayed diagnoses on our clients and the specialised services that support them

More complex needs

At Chai we often talk about the ‘ripple effect’ of cancer; how a diagnosis affects not only the patient but also those surrounding them: parents, children, partners, friends and colleagues. Clients tell us that Covid-19 has added an extra layer of trauma, magnifying the physical and emotional hit that they and their loved ones are already experiencing because of the cancer.

With our team of Client Services Managers, I see the evidence of this: an intensified need for support, more young parents diagnosed with cancer contacting us, and more members of the same family requesting our services. In our Chai Medical Clinic, which provides three-way multidisciplinary care with The Royal Free Hospital in London and Marie Curie, Dr Rachel Craig reports a 21% rise in the number of clients presenting with pain management and palliative issues including those diagnosed late or with new co-morbidities.

Since the pandemic began, counselling appointments have gone up by 33%. Each represents one piece of a growing emotional and logistical jigsaw which can now take in several generations of one family. Now, if Covid-19 left anything behind that is good, it’s that access is easier than ever: in a centre or through our Home Support Service, via Zoom or Teams or on the telephone. It means clients can join a yoga or Pilates class remotely and be supported while shielding or after surgery. There are still good reasons, though, for clients to come into their Chai centre: to enjoy the uplifting and healing atmosphere and to get away from medical settings where the cancer is the centre of attention, to a place where the person is the focus. For new clients especially, visiting Chai helps dispel any notions of a clinical environment or approach – we are very far from that.

A lesson in support

This year marks the tenth anniversary of the Chai in Schools programme. So fundamental to our services is it, that we cannot imagine not having this essential link in our chain of support for families. Children and teens, just as much as adults, need to be able to process what is happening when there is a cancer diagnosis or bereavement in the family. Appointments for children are up by 63%, leapfrogging demand for all our other services.

We have supported children in 38 Jewish and non-Jewish schools over the last three years, at both primary and secondary level. That our expertise is called for across the educational spectrum shows not only awareness of the programme but also appreciation of its importance. It’s an acknowledgement, as well, that we are trusted to understand the nuances of culture that exist in a wide range of schools.

The change in demand for our services is across the board. After a fall in therapy sessions (such as massage and reflexology) because of Covid-19 restrictions, clients are now benefitting from these treatments, and appointments have more than doubled in recent months. We now run 17 groups –from art to bereavement, BRCA to men’s support – and more are planned. To meet the need, our team is expanding. We now have 41 counsellors and 36 therapists across the UK. It’s intense working with people who are dealing with cancer. Along with their professional accreditation and experience, a counsellor or therapist needs to possess those intangible qualities that make them a good fit for Chai, where everything is delivered from the heart.

At a time when school counsellors are dealing with the mental health fallout of Covid-19, Chai counsellors can relieve the school of an additional burden and give parents peace of mind that their child is being supported very specifically and without disruption to their education. We are so gratified by the input and commitment of the schools we work with, to ensure their pupils/our clients receive the support they need to grow into capable, resilient adults.

As Chai looks ahead, we heed the wisdom of our Medical Advisory Panel, chaired by Dr Adrian Tookman, to help us prepare for the future. Despite all the negative news, many more people are living for longer with, or beyond, cancer. Surgery is more sophisticated; chemotherapy can sometimes be a daily pill. But pills can have side effects and ‘successful’ surgery can cause ongoing health issues. The cancer/Covid-19 domino effect is still in motion and the numbers of new diagnoses are up.

We do not charge for our services but without any statutory funding, our annual running costs, currently £3.5m, are going in only one direction. Our generous, ever-expanding community of patrons, donors, sponsors and fundraisers are the sole means by which we can make a difference to people’s lives. Your continued support for the community’s cancer support organisation means literally everything to us, and to those who turn to us at their time of need.

‘We now run 17 groups – from art to bereavement, BRCA to men’s support’

‘ Appointments for children are up by 63%, leapfrogging demand for all our other services’

Chai’s family tree of support

Mum, Nikki

‘We’d just come off the beach in the South of France and Joey was practising scooter tricks when he fell. He started screaming uncontrollably, which wasn’t normal. Later in the evening, when he began vomiting, we rushed him to the nearest A&E in Monaco. Lockdown restrictions meant only my mum could come in with me, to translate. After a CT scan, the doctor said, “It looks like there’s a mass… but don’t worry.”

Immediately, my brain went straight to the “C” word – I can’t say it, even now. We were transferred by emergency ambulance to a hospital in Nice, better able to manage the situation, and here they confirmed a Wilms’ tumour. It was already eight inches long and growing aggressively. The fall had perforated it and he was bleeding internally.

The doctor ruled out any possibility of Joey travelling so we couldn’t come home. I was 19 weeks pregnant and suddenly our lives had been turned upside down and shaken like a snow globe. In intensive care, Joey was in a lot of pain, drifting in and out of sleep. When he woke, he’d ask: “Mummy, why have I got so many tubes in me?” Ray and I took a hotel room opposite the hospital and did shifts to be with Joey, swapping over so the other one could rest.

Great Ormond Street Hospital (GOSH).

I’ve never been good at accepting help, I’d rather give it. But a good friend working for Camp Simcha said, ‘Let us take care of the transport to and from the hospital,’ and having that burden taken off us, was a true blessing. Friends said, ‘You’re amazing.’ But I knew I wasn’t. I’d been whacked across the face with a sledgehammer.

Because Chai was closed at the time and we were all at home, my first counselling session with Chai was by phone in a car park –I didn’t want Joey to hear. I needed to cry and scream. I wanted to understand why this had happened. I needed structure to get me through. I also needed to wallow in my trauma. Joey would still be having treatment when the baby arrived… would I sink?

The counsellor gently helped me put the confused, layered pieces of this jigsaw into one big picture. Later on, when I was offered massage, it was so welcome – like a huge, beautiful gift.

A children’s therapist gave us ways to talk to Joey about what was going on, in a way he could understand and the counselling gave me a way to look at events and take positives from them, I want Joey to have whatever support he needs but I also want him to have a normal life. Because what happened to him does not define him. It doesn’t define us.

Grandma, Linda

Thankfully, the bleeding stopped, and the plan was for chemotherapy to shrink the tumour by 40% and then to operate to remove the kidney. Snuggling Joey into me, I nestled into his hair. The oncologist promised me he wouldn’t lose it. But he did. Ever since, I say to every doctor, “Please… manage my expectations”. The painkillers gave Joey night terrors. It was horrific and I felt utterly helpless.

Between chemo sessions, Joey couldn’t do any of the things a little boy wants to, in case he ruptured the tumour again. All the while I was getting bigger with Scooby (the name Joey gave Jesse, before he was born).

Each morning I’d pick the hair off his pillow, though my mum would try and get there and do it before to save my heartache. The day of Joey’s operation was one of the worst of my life, but getting that thing out of his body was what mattered. Finally, in mid-October, we arrived home. The next day, 28 weeks of chemo began at

When

the doctors gave us the diagnosis, I thought only of the here and now. It was all about the practicalities. My chief concern was to support Joey, Nikki and Ray, and take whatever pressure we could, off them. Day-to-day, there were hospital visits, bringing them food and fresh clothes. Between July and October Nikki was getting bigger and we had to buy maternity clothes as well.

In ICU, Joey was like Bambi, so fragile. Nikki and Ray could barely cuddle him because of all the medical equipment in the way. The fallout began back in London: I felt overwhelmed, emotions seeped through. Again, because of Covid restrictions, we couldn’t see our son Lee, his wife Robyn, and our other grandchildren and Joey couldn’t play with his cousins. It was stressful for everyone, and I took on those emotions.

Having been a volunteer for many years, I couldn’t believe I now needed to reach out to Chai. My counsellor was a very good match. She pointed out how I de-personalise language to deal with things. With her I began to articulate the impact of all this on me. I’m prone to migraines, so I had some massage and reiki, which was so healing. I allowed myself to accept. I feel an inextricable bond with Chai as a supporter, as a volunteer and now as a recipient of this very special support.

When three-year-old Joey Bloom had a scooter accident on holiday in August 2020 and scans revealed a kidney tumour, parents Nikki and Ray and grandparents Linda and Michael Bibring saw their worlds turned upside down. Chai was there for each of them

‘I wanted to understand why this happened. I needed structure to get me through’

Joey, 5 Shira

is kind and funny. When she talks to me, I feel happy. I play with Lego and sand, and I make pictures. When we play ‘knights’, I have two shields and Shira always loses! The tropical fish at Chai are cool, especially the purple and the black and white stripey ones that look like zebras.

Two years on from Joey’s diagnosis: (from left) Michael, Ray, holding ‘Scooby’, Nikki, Joey and Linda

Dad, Ray

Watching

Joey in intensive care, not knowing if he’d make it to the next day, I had an out-of-body experience, looking down on myself sitting in a chair in floods of tears. All I could think was “Take it away from him”, “Don’t let this be real”. Joey was just three, an innocent kid. How could he have a tumour? When, on day four, a scan showed that the tumour hadn’t spread, it was our first moment of optimism. But we had such a long way to go with treatment and surgery.

By the time we got back to London, Nikki was heavily pregnant. I effectively stopped work to take Joey for his treatments and hospital appointments. Rightly or wrongly, I felt that if I started expressing everything going on in my mind, it would have a detrimental effect. I had to keep it together for Joey. But as time went on, I recognised I’d reached my limit and I turned to Chai. I felt quite fragile at first. If I broke down in the counselling process, I worried I might not be able to build back up again. But getting a whole load of stuff out of my system freed up more space for me to cope. I could say things without thinking. There was no judgement, the counsellor was only focused on the one thing going on in my life. That kind of support is important because you can’t share all your thoughts with family or friends.

Chai helped me massively: to process what happened, to step back and view life differently. So now, a disaster at work is no longer the end of the world. The counselling, play therapy and other treatments have been incredible. Before Joey got ill, I might see him for a goodnight kiss during the week. Spending so much time with him has given me a relationship with him I would never have had.

Joey is better now and that’s all that we ever wanted. Yet, I’m not quite ready to let go of what happened. Every time there’s a check-up, feelings return but I know that Chai is always there for me. When we go to GOSH now, he knows he has his ‘pictures’ taken but then we go and have fun for the day.

Grandpa, Michael Seeing

Joey motionless in hospital made no sense. He was such a lively boy. We let family know we were staying on in France to be with Nikki and Ray and in a way, being away from the UK simplified things. Our bubble gave us a strength that might have been more complicated to manage at home.

The flipside of being in a tight group was that there was no release. I can compartmentalise my feelings but when it’s a grandchild… that’s way more difficult. I wasn’t sure about having counselling because I’m not very good at that sort of thing but coming to Chai certainly gave me an outlet. And when I felt I no longer needed it, there was no pressure to continue.

We see Joey recovered and the nightmare is fading. The experience leaves its scars and every three months, when he goes for his check-up, we are nervous wrecks. But we are so grateful Joey is one of the lucky ones: that it was curable, that we had each other – and that we had Chai.

‘Chai helped me massively: to process what happened, to step back and view life differently’

‘

When Shira talks to me, I feel happy’

Understanding sarcoma

There are over a hundred different types of sarcoma. They can occur in the soft tissues as well as in the bone, can affect people of all ages, and appear in any part of the body. Despite this, sarcomas are rare, making up just about 1% of all cancers. Recent figures record approximately 3,500 new cases of soft tissue sarcoma and 500 cases of bone sarcoma diagnosed annually in England.

Frustratingly we cannot identify the causes of sarcoma for most patients, as the biology is still not very well understood. What we do know is that it’s generally not related to lifestyle factors. A small percentage are caused by a genetic predisposition and inherited conditions, and it can also arise as a result of exposure to radiotherapy, but these are extremely rare.

Where do sarcomas start?

Sarcomas commonly begin in the arms and legs, but they can also start in the trunk, head and neck, stomach, abdomen and pelvis. However, as these cancers are rare and have so many types, they can be difficult to diagnose. Unfortunately, that means many patients experience delays so it is vital that people with symptoms contact their GP and are seen face-to-face for a physical examination as soon as possible.

What are the symptoms?

In soft tissue sarcomas, there is most usually a lump, which can be painless but nevertheless is changing or growing. Any lump bigger than a golf ball should be investigated. Sickness, stomach pains, loss of appetite or feeling full are symptoms from a common form that starts in the stomach called gastro-intestinal stromal tumour (GIST).

In bone sarcomas, pain in or around a bone is the most common symptom. The pain may be constant or come and go, but it worsens with time and painkillers become ineffective. The pain can also increase at night. Other symptoms include a lump or swelling, with tenderness over the bone, stiff joints, reduced movement or a limp.

Two of the most common types of bone sarcomas, osteosarcoma and Ewing sarcoma, mainly affect teenagers and young people and these can often be misdiagnosed as a sporting injury or even growing pains. If your teen complains of these symptoms, get them investigated as quickly as possible to narrow down the cause.

The puzzling symptoms of this rare cancer mean it can be hard to diagnose. Leading sarcoma specialist Dr Sandra Strauss describes the signs and treatments

Diagnosis and treatment

The nature of sarcomas mean they require specialist care, so any patient with a suspected case must be referred to a specialist diagnostic sarcoma centre. Five centres for bone sarcomas in England cover London (through the Royal National Orthopaedic Hospital and UCLH), Greater Manchester, Birmingham, Oxford and Newcastle. Thirteen more centres specialise in soft tissue sarcomas while Wales, Scotland and Northern Ireland also have dedicated facilities devoted to both types.

Once diagnosed, patients are assigned a specialist sarcoma multi-disciplinary team (MDT) to consider the most appropriate approach for treatment, with patient involvement fundamental to that process. Surgery to remove the tumour is always the preferred option. Radiotherapy is also used to treat aggressive soft tissue sarcomas or those measuring more than 5cm, to help reduce the chance of the cancer coming back.

The treatment for patients with osteosarcoma and Ewing sarcomas is complex, involving multi-drug chemotherapy over a period of around nine months, as well as surgery and/or radiotherapy. It can be a tough journey with many hospital stays, and the familiar side effects of sickness, tiredness, infections, sore mouth, and hair loss. Surgery to remove the affected bone (and more rarely amputation) may be the only lifesaving but also life-changing option, with potentially great impact on young people.

One can’t underestimate the physical, mental and psychological outcome of treatment on a youngster’s physical function, education and plans for the future. Specialist Teenage and Young Adult hubs, set up by the Teenage Cancer Trust (TCT) are in place in major cancer centres across the country, designed to help young people facing cancer feel supported, where they can access dedicated medical, nursing, physiotherapy, and youth support teams in a more relaxed setting (https://tinyurl. com/355t3p58). Outside of hospital, Chai’s teenagefocused services provide counselling, physiotherapy, music, art and other complementary therapies, which can make a big difference in the short and longer term, to help patients adjust to their new circumstances.

Outcomes and the future

Survival rates depend on the type of sarcoma. Although there have been improvements over recent decades, it is a challenging area of research, with many different types of sarcoma and few new therapies available. Sadly, due to its rarity, it also attracts less money dedicated to research.

There is good news however. Exciting collaborations across the country and in Europe are bearing fruit. For example, the Euro Ewing Consortium set up in 2013 to improve outcomes for patients with Ewing sarcoma recently were able to define the best treatment for newly diagnosed patients as as well as for those where the disease has recurred. The consortium is also looking at genetic biomarkers and new types of chemotherapy.

For osteosarcoma, the Bone Cancer Research Trust has funded a national study, led by UCL. This has brought together clinicians, pathologists and scientists across the country to improve outcomes by identifying new treatments through a better understanding of the biology and impact of treatment on patients with this diagnosis. It is recruiting all patients with newly diagnosed osteosarcoma and is open in 23 centres across the UK. In all developments, the patient’s voice and priorities are embedded in the process of developing new treatments.

I believe that this collaborative approach is our best route to improving the survival rates for people diagnosed with this perplexing cancer and the best way to improve their quality of life.

Dr Sandra Strauss

MBBS FRCP PhD is a Senior Clinical Lecturer and Honorary Consultant Medical Oncologist. Based at University College London Hospital, part of the London Sarcoma Service, she specialises in the systemic treatment of bone and soft tissue sarcomas, and researches novel therapeutics in sarcomas across all ages.

She is the principal investigator for a number of sarcoma studies and the Clinical lead for Sarcoma and rare cancers for Public Health England. She is particularly concerned with variations in patient pathways and access to specialist services to reduce inequalities and improve outcomes.

‘Two of the most common sarcomas mainly affect young people and can often be misdiagnosed as growing pains’

My Chai in… the northwest

It’s five years since Chai’s regional hub based at The Fed in Prestwich, North Manchester opened its expanded centre to the community. Over that time, the number of clients benefitting from this beautiful purpose-built resource has continued to rise.

‘We were quiet in the centre because of lockdowns,’ says Gerry Singer, northwest regional manager. ‘Restrictions went on longer in this part of the country, so Chai was busier with remote support for clients. There was some initial nervousness around coming back into the centre once we re-opened but we have maintained safety protocols so people can feel confident in the building.’

To meet the extra need for services, in addition to an existing BRCA Support Group, Bereavement and Women’s Support Groups were introduced in May and a new art group began in August. A further group for carers is in the pipeline. ‘Clients were so excited to have human contact again. After so much isolation, it’s been very special to welcome them back into this lovely environment.’

Sensitive to local concerns

Chai northwest covers North and South Manchester, Leeds and Liverpool. There are clients further afield, too, in Newcastle, Gateshead and Sheffield. In smaller communities which are nevertheless spread out, nuanced differences exist in how services are delivered compared to London. ‘People may worry that others will know their business or they’re friends with the counsellor or therapist,’ explains Gerry. ‘Confidentiality is at the heart of our services but if a client, for instance, is in Leeds, and does not want to be seen by a counsellor from the same area, we have the flexibility to accommodate this. Ensuring people trust how we operate is vital in encouraging them to come forward.’ Gerry is also keen to highlight there is no charge for any of Chai’s services.

Chai’s success in reaching out can be seen in the services it provides to clients that come from across the whole community. Enquiries for support in schools, including those

in the Charedi community, are more frequent, too.

Chai is now woven into the fabric of the community in the northwest, drawing support from across the region for events such as the Week for Chai fundraiser, social and sponsored events, which do so much to further raise local awareness.

My Chai in Liverpool

Geoff Charing, 73 is having counselling and has been part of the bereavement group following the death of his wife Jo who was also a client.

‘I was slightly anxious before I went to Chai but they put you at your ease even in the most difficult of circumstances.

To hear from people in similar situations, to give and receive solutions, to talk through issues that had been worrying me and hear a neutral viewpoint from someone who can understand, has been such a help. Jo and I also had massage treatments which greatly relieved the stress we were under. I always left Chai with a better mindset than when I had arrived.’

This campaign aims to raise awareness of the breadth of our services across the region and the many ways we support clients who turn to us

Leeds Liverpool North Manchester South Manchester

My Chai in North Manchester

Sharna Saunders, 40, lost her husband, Mark in May 2020.

‘My journey with Chai began in late 2017 when my husband and I both came for counselling and various therapy treatments. My son Josh who is now six, has been coming for weekly play therapy sessions with Louise since October 2020. Chai is an amazing place – that I hope no one ever needs to use. But thank goodness it exists. There is no charge, and it has been a huge lifeline for me and my son. Every day is difficult, but Chai makes it a little bit easier.’

Laura Ben Mayor learned she has the BRCA gene and has been supported by counselling and complementary therapies

‘I was struggling to come to terms with my BRCA diagnosis. Counselling made a huge difference to me. To speak to someone who wasn’t a friend or family member was so important as I made decisions about what to do moving forward. The reiki was amazing, too, helping me to stay grounded and to ease the pain I had after my mastectomy. Chai has been a massive support to me and my family.’

My Chai in South Manchester

My Chai in Leeds This is Our Chai in Leeds Care is at the heart of everything we do. Chai’s specialised services include Individual, Couples and Family Counselling and a range of Complementary Therapies locally in Leeds. Our support and care can be accessed in person, over the phone, and on Zoom, without any charge and in complete confidentiality. For more information please call 0161 772 4760 or visit chaicancercare.org Together we can cope. Together we will care.

Stanley Glucksman, 73 was diagnosed with Stage 4 kidney cancer and secondaries in 2018. He and his wife Rhona, 68 have reflexology, reiki and counselling. Stanley also has dietary advice.

‘Following my diagnosis, the counselling has helped both Rhona and myself emotionally and the therapies have made us feel more relaxed. Without Chai we would not have been able to prepare for all the challenges ahead.’

My Chai in North Manchester

Chana Orshansky, 31 and husband Raphael, 35 and their children are receiving a range of services because of Raphael’s brain cancer condition. This includes complementary therapies, counselling, physiotherapy and play therapy.

‘Chai has been an incredible support to our whole family. They are always there for us, and we have all benefitted from their services. The reflexology, physiotherapy and counselling has been amazing and we so appreciate the play therapist who goes into school and looks out for the children, helping them navigate the different emotions that come with this illness. Everyone we encounter is kind and warm and always professional.’

Daniel Jackson, 42 came to Chai when his dad David was diagnosed with cancer. David passed away last year, and Daniel has had counselling and was in a bereavement group.

'Group counselling and listening to others showed me I am more resourceful than I realise. When someone you love is going to die, the grief sets in immediately, but the emotions are not linear. Talking to a counsellor helped me understand that complexity without trying to solve it and prepared me to support myself and my family. Chai’s unconditional support and kindness helped bring light into my grief. I will forever be grateful for their support.’

Our ‘My Chai’ campaign aims to increase awareness of Chai’s support in the northwest

Men don’t get breast cancer, do

’m a 59-year-old single dad, living in Watford with my two teenage children. I write and direct (and sometimes perform) comedy, and if you told me I was going to get breast cancer, I would have thought it was a joke… It is rare: of more than 55,000 breast cancer diagnoses each year, only one in 150 are men. Which struck home when I chatted with my cancer nurse after receiving the news. She had worked in breast cancer screening for seven years and I was only the third man she’d had “the talk” with.

‘I

I discovered the lump because I sleep on my front and, like in the Princess and the Pea fairy-tale, I felt I was sleeping on something. Yet when I checked the mattress, I couldn’t find anything… still I could definitely feel something there. And that’s when I realised. The lump was in me.

So, I did what any normal man does… I tried to ignore it.

The thing was that even in the space of three weeks, I could feel it was getting bigger. I also knew that breast cancer runs in my family. Both my gran and a cousin had it, so I thought it was worth getting checked out… just in case.

As soon as my GP examined me, she made the referral to St Albans City Hospital Breast Clinic where I was seen five days later. I had an ultrasound, they took a sample of the lump and the consultant said, even before the results came back, ‘suspected breast cancer’. A week later it was confirmed. Stage 2, quite aggressive… it needed to come out quickly.

For me, stepping into the breast clinic for the first time to be checked was difficult. I was the only man there and I didn’t feel I belonged. My breasts are not an important life-giving part of my body like they are for women, nor are they part of my identity, so having one removed was not such a big deal, but my heart went out to the women sitting there in that waiting room with me. No one would really notice if I lost a breast so long as we got the cancer out.

On December 15, 2021, I was in surgery having the lump – and my left breast – removed. In the seven weeks between me finding the lump, and the operation, it had more than doubled in size. Several months on, and with all the tests and checks they do after surgery, I know I am lucky. The lump was removed along with all the cancerous cells. My lymph nodes were clear; I didn’t need chemotherapy. I did have the genetic screening, however, to check if the cancer was due to a DNA abnormality, which would have had implications for my children, my siblings, and their children. But it wasn’t the case and I have been told if I take my medication, there is only a 3% chance that the cancer will return in the next nine years. Physically, that’s probably the best result I could have expected. Emotionally though, I am not so sure. Everything happened so fast, I couldn’t process what “getting cancer” meant to me. As a single dad I was more focused on what might happen to my kids if treatment didn’t go well. And many men aren’t comfortable talking about their feelings.

That’s where Chai has been so essential. Having regular sessions with one of the counsellors is helping me get back on track, and working with a personal trainer in the Chai gym has helped me to build up my stamina. To help restore my wellbeing in other ways, I have had some reiki and reflexology sessions. Walking into Chai feels like walking into an oasis of calm and tranquility, and I am extremely grateful for the support they have been giving me.

So, men… check your boobs (and other bits), and if you feel something a little odd, don’t dismiss it, get it checked. Had I ignored my lump, well… I would be telling a very different story.’

they? Well, yes, they do… I did

‘If it wasn’t for a “Princess and the Pea” moment,’ writes Neil Ben, ‘I’d probably still be blissfully unaware that a cancerous tumour was growing in my left breast’

‘Icouldn’tprocesswhat“getting cancer” meant… that‘s where Chai has been so essential’

Male Breast Cancer - Fact File

by Miss Joanna Franks, consultant breast and oncoplastic surgeon

Male breast cancer is often diagnosed at a more advanced stage than female cancers, probably because men don’t think that a change on the chest wall or around the nipple could represent a breast cancer.

Diagnosis

Treatment is more successful and often less aggressive if diagnosed early and the investigations and treatments are similar to those for women. At the breast clinic, an ultrasound of the chest wall is carried out. A biopsy, usually under local anesthetic, mammogram, CT/bone or PET scans may also form part of the diagnosis.

Treatments

This is determined by many factors such as the grade and size of the tumour, the involvement of the skin or chest wall, local or distant lymph nodes, and other organs. Sensitivity to certain treatments and genetics play a part in how chemotherapy and other targeted therapies are administered. Surgery may mean a mastectomy, removing the – nipple-areolar complex and underlying breast tissue plus axillary surgery to the lymph nodes in the arm pit.Radiotherapy may also be required. After treatment finishes, there are options for reconstructive surgery and/or nipple tattooing.

The follow-up

An annual clinical and imaging assessment and possible hormone treatment, such as Tamoxifen, for five to 10 years.

Rashes

Swelling or a lump in the axilla – under the shoulder joint where the arm and shoulder connect

A lump close to the – nippleareolar complex or on the chest wall.

It’s usually painless

Risk factors for men

Excess exposure to oestrogen

Exposure to radiation

Chai provides support through…

Changes to the nipple: inversion, retraction or discharge (maybe with blood)

A change in the shape or contour of the chest wall

on or around the nipple; a nonhealing ulcer

Most diagnoses occur in men aged 55-70 years

Family members who are BRCA2 or less commonly BRCA1 mutation carriers

What men – and women – need to check for

Slowing the tide of myeloma

Blood cancers cover a wide range of different conditions, including various types of leukemia and lymphoma. Less well-known but still relatively common is myeloma, a condition which sees around 5,500 new cases diagnosed in the UK each year. Although it remains an incurable condition for most patients, new drugs developed over the last 20 years, have led to a dramatic improvement in patient health and survival rates.

As with all cancers, myeloma is caused by the uncontrolled growth of certain cells within a person’s body. In myeloma these are a type of blood cell called ‘plasma cells’, whose normal function is to produce antibodies (or immunoglobulins) that protect the body against infection. In myeloma, an increase of plasma cells in the bone marrow can cause anaemia due to crowding out of normal red blood cell production. They may also cause bone damage as clusters of myeloma cells spread to the skeleton. This can sometimes lead to fractures requiring surgery or bracing. The excess production of certain types of immunoglobulins by myeloma cells can also cause kidney damage. Because the impact may affect several organs, as well as the haematology team managing a patient’s care, other medical specialists may be called in, for example kidney physicians and orthopaedic surgeons.

Treatment on many fronts

Myeloma is not typically isolated to a single area which can be treated with surgery or radiotherapy. This contrasts with many ‘solid organ’ cancers that can be treated, and sometimes cured, if detected early enough. Myeloma treatment therefore is largely based on the use of chemotherapy. For many years, this was delivered in combination with steroids. While these still play an important role, drugs developed over the last 20 years have revolutionised myeloma management. Most critically for patients, newer drugs are generally less intensive than previous ones and are mostly given either as tablets from

the outpatient clinic, or as drips and injections in a day unit. In some cases, a bone marrow transplant will be the recommended treatment option and while this is much more intensive and requires a hospital stay, the results often extend the time patients are in remission and enjoy good health.

These changes have led to a dramatic improvement in survival in myeloma patients: in the 1970s only around one in 20 people diagnosed with myeloma survived their disease beyond 10 years – now it’s one in three. They have also had a transformative effect on the way we can discuss myeloma with patients and their families in the clinic. What was once a rapidly progressive disease can now be a chronic condition that, with careful monitoring and treatment, may be managed for many years with a good quality of life.

New treatments and approaches are significantly improving the outlook for patients with this blood cancer, explains consultant haematologist Dr Jonathan Sive

‘Clinical trials on CAR-T cell immunotherapy use the patient’s genetically modified cells to kill myeloma cells’

Next-generation possibilities

A new form of therapy currently undergoing clinical trials is CAR-T cell immunotherapy. This involves using genetically modified cells – usually from the patient, but possibly in the future from a donor – and targeting them specifically to kill myeloma cells. This is an exciting area of research which has already shown benefits in treating some leukemias and lymphomas. Although its routine use in myeloma is still some way off, it is likely to play an important role in the future.

Current research is focused on working out how we can personalise treatment for patients to avoid either under-treating people with high-risk myeloma, or over-treating those with a less aggressive type. There is a long way to go but already important strides have been made thanks to the detection of certain genetic features found in the myeloma cells at diagnosis, which allows a more precise risk-assessment of patients. Another approach is the use of more sensitive ways of assessing a patient’s response to treatment using different laboratory tests, as well as PET and MRI scans. Significant progress has already been made in this area, and current clinical trials, both in the UK and internationally, are investigating how to improve things further.

Looking at the whole person

An essential part of good cancer care is a holistic approach, to ensure that patients are supported not just in their physical needs, but also psychologically and socially. We routinely work alongside Clinical Nurse Specialists who provide invaluable expertise and support; national surveys of cancer patients have consistently emphasised the important role they play and how they are valued by patients and families. Organisations such as Macmillan Cancer Support give vital back-up, and we are fortunate within the Jewish community to have Chai Cancer Care which delivers its unique services around the country. Finally, Myeloma UK is a specialist charity that provides support and information to patients and families, as well as playing an active role in research and patient advocacy.

The diagnosis of any cancer can be devastating to receive. However, the trends over the last 20 years as well as the ongoing research really can provide clinicians, patients and their families with confidence that things will continue to improve.

Dr Jonathan Sive is a Consultant Haematologist and Clinical Lead for Myeloma at University College London Hospital. He is involved in several national myeloma trials, with a special interest in molecular detection methods, and quality of life assessment. He is an executive committee member and Education Lead for the UK Myeloma Forum, and a member of Chai’s Medical Advisory Panel.

You’re never too young to be prostate aware

The most common cancer in men is prostate and in 2019, it accounted for 28% of all male cancers. More than half were diagnosed with stage 1 or 2 and at that early stage, patients have a 100% fiveyear survival rate, according to the Office for National Statistics.

The NHS is keen to build on these positive numbers through its long-term cancer plan. At the moment there is no screening programme for prostate cancer, as it has not been proven that the benefits would outweigh the risks. However, there is an ‘informed choice programme’, which enables men over the age of 50, or younger men with other increased risk factors, to have a discussion with their GP in order to arrange a blood test to measure their PSA level (PSA is a protein produced by normal cells in the prostate and also by prostate cancer cells).

If you have a family history of prostate cancer, or if you carry a BRCA mutation, you should speak to your GP about starting annual PSA testing earlier than age 50. The PSA level can be used to identify men who require further investigation. Most men with a raised PSA will not go on to be diagnosed with prostate cancer. If your PSA is raised, you will be referred to a urology clinic, where they will take a thorough clinical history and possibly an MRI scan. The use of PSA in combination with MRI scanning helps flag up those patients who need further invasive testing, such as a biopsy.

When diagnosed early, prostate cancer can be successfully treated with a variety of options. Not everyone will be eligible for all courses of action, but it is important that patients receive sufficient information and be empowered to make the best treatment

Survival rates for prostate cancer are 100% when caught early enough. Consultant clinical oncologist

Dr Gillian Marks describes how to ensure the best outcomes

decisions. Some treatments are delivered by surgeons and others by oncologists. Both surgery and radiation-based treatments have the same cure rate but carry different side effects. So, if you are offered different possible treatments, take the time to understand what each one is and their respective side effects.

Curative treatments for prostate cancer are usually prostatectomy (surgical removal of the prostate), external radiotherapy or brachytherapy (when radiation is delivered internally). Sometimes patients may be eligible for minimally invasive soundwave therapy (called HIFU) or cryotherapy, when extreme cold is used to ablate (destroy) abnormal tissue.

Beyond factual medical guidance, the health professionals and therapists at Chai provide many supportive services for men, including counselling, psychosexual counselling, physiotherapy and a Men’s Support Group.

Recently, throughout the UK, there has been a move towards patient-centred decisions, where multi-disciplinary professionals ensure that patients are involved throughout the process. Surgeons, oncologists, clinical nurse specialists, radiologists and pathologists meet to discuss newly diagnosed patients to get a range of expertise and opinions. Patients should then be seen by both an oncologist and a surgeon so they can receive balanced and specialist advice.

Not all men diagnosed with prostate cancer need treatment straight away. Many factors, including age, general health and the likelihood of the cancer causing a problem, are considered. These, along with the potential side effects of the treatments, will help to guide decision making. Some men may undergo a period of active surveillance or watchful waiting prior to treatment –and with good reason, as it can delay potential side effects such as urinary, bowel symptoms or erectile dysfunction, for longer. Other men are less concerned with the possible side effects and more focused on removing or destroying the cancer cells.

There are occasional situations where a team would recommend one treatment over another but often patients would be suitable for several. As more people are diagnosed early, a greater number of patients will be living with longterm side effects of anti-cancer treatments and long-term support services are available via Men’s Health Clinics.

Hospitals often run seminars, and Macmillan and Prostate Cancer UK also provide unbiased, factual help. There are many online resources available to support patient decision-making. One I’ve been involved in developing is: https://tinyurl.com/2p97puyf

The most important message to take home if you are concerned about your prostate cancer risk is to consult your GP to discuss getting a PSA test. If you are diagnosed with early prostate cancer, there are many treatment options. Taking a few days to reflect on the treatment best suited to your needs won’t alter the outcome but will ensure that you have all the information you need to make a considered decision.

Weighing up your options

It is important to take time to make the correct decision for you. These are some things to consider:

Are you comfortable with active surveillance or watchful waiting, even if it may lead to additional anxiety, extra tests and appointments?

What kind of treatment side effects might you tolerate and what would you prefer to avoid (urinary symptoms, impotence, bowel symptoms)?

Would you prefer treatment with newer technologies which may have some advantages, or standard treatment which has more long-term data available?

How important is treatment/recovery time for you? (Some radiation-based treatments are delivered over a period of weeks.)

Dr Gillian Marks is a Consultant Clinical Oncologist at Mount Vernon Cancer Centre. She specialises in the treatment of cancers of the urinary tract such as prostate, bladder and kidney cancers. Her clinical practice includes both radiation and systemic (hormone treatment, chemotherapy and immunotherapy) treatments. Her areas of interest include the role of radiotherapy techniques in the treatment of kidney cancers, image guided radiotherapy and brachytherapy in the treatment of prostate cancer.

She is involved in the education and training of future consultant clinical oncologists and is an educational and clinical supervisor. She is a Regional Specialty Adviser for The Royal College of Radiologists and has recently joined Chai’s Medical Advisory Panel.

‘ Take the time to understand what each treatment is and their respective side effects’

Raising BRCA awareness across the community

BRCA genes exist in all of us and are there to inhibit cancer developing. Within the Jewish community, however, certain faulty or mutated versions of the BRCA1 and 2 genes mean men and women are more likely to develop BRCA-related cancers, namely breast (female and male), ovarian, prostate, pancreatic and melanoma.

In the wider population, about one in 200 to 300 people are carriers of faulty BRCA genes. In the Ashkenazi community it’s one in 40, and cancer-causing BRCA genes also exist in Sephardi/ Mizrachi communities. BRCA-related ovarian cancer in the nonJewish population is 1 in 7-10; in the Jewish population it’s 1 in 3. Similarly, BRCA-related breast cancer is 1 in 25-30 versus 1 in 10.

Currently only people with a familial history of particular cancers are eligible for genetic testing under the NHS. However, in 2023 NHS England is piloting a scheme testing for BRCA gene mutations for anyone with at least one Jewish grandparent. ‘Chai is encouraged to see testing for the whole Jewish community being made available,’ says CEO Lisa Steele. ‘Any development that can save lives is welcomed.’

Awareness about BRCA is vital because the issues it raises can be complex, far-reaching and life changing. If you are a carrier, what does that do to your life plans? Holding that knowledge is a responsibility. Who do you tell in your family, and how? What are the implications for fertility? What can you do about the elevated risk? Will you pass on the faulty gene to the next generation? The questions and dilemmas can be overwhelming.

Chai offers a safe place to discuss BRCA issues with support from counsellors who have received specialist training from the Royal Marsden and Northwick Park hospitals’ genetic teams. ‘We see individuals and couples prior to and after being genetically tested, and provide group and peer support for BRCA carriers,’ explains Lisa Steele. As men can also carry the faulty BRCA gene, there is a mixed and women-only group. ‘Knowing you are not alone is so

The BRCA2 gene mutation is implicated in breast, ovarian, prostate and pancreatic cancers

important because the impact of a positive result can feel isolating,’ she says. ‘It’s a deeply personal subject and members of one family faced with the same risks may make different decisions.’

There has always been a referral system between Chai, Jnetics – the community hub providing information and advice about genetic conditions – and Chana, which focuses on male and female fertility issues. Dr Veronique Berman, director of Chana, says, ‘There are many choices to consider, including preserving fertility ahead of medical or surgical options, through to supporting couples choosing to do pre-implantation genetic diagnosis (PGD) treatments to avoid the next generation being carriers of the BRCA gene.’

Since the NHS announcement, enquiries to Jnetics about BRCA are up by 25%. CEO, Nicole Gordon says, ‘We can explain the risks of being a BRCA carrier and guide clients through the genetic testing process. Our aim is to improve access to the best available information by signposting people to organisations such as Chai and Chana.’

Dr Ian Ellis, Senior Lecturer in Clinical Genetics at the University of Liverpool and a member of Chai’s Medical Advisory Panel, says, ‘Testing positive for the BRCA gene does not mean a person will get cancer but there is a higher chance: risk-reducing options for a woman may include the removal of the ovaries and/or fallopian tubes and/or a single or double mastectomy. The decision does not necessarily need to be immediate, and some women will adopt a ‘watch and wait’ approach, monitoring via scans and/or mammograms for early signs of breast cancer.’

Working together, each organisation can reach all parts of the community and provide the wraparound support people need to make the best BRCA choices for their situation.

For more information about BRCA support, please contact charlotteh@chaicancercare.org or call 020 8457 3238. chana.org.uk | jnetics.org