Olympic Torchbearers?

Connect
info@sarcoma.org.uk
www.sarcoma.org.uk
The bone & soft tissue cancer charity
Summer 20 1 2
Did you see our
Olympic Torchbearers?
Four inspirational
supporters tell us about
their once-in-a-lifetime
opportunity – carrying
the torch at London
2012 and representing
anybody touched by
sarcoma. See page 4
6
A carer’s
perspective
Sarcoma affects everybody,
not just the patient
13
Research update
Dr Janet Shipley gives a
personal view on her research
project into sarcoma
15
Leiomyosarcoma
Statistical insight from
The West Midlands
Cancer Intelligence Unit
From the Chief Executive
Sarcoma UK’s key messages
UK is the main charity in the UK dealing with
• Sarcoma
all types of sarcoma
UK provides information and support for
• Sarcoma
anyone affected by sarcoma – patients, carers, relatives
and friends
Sarcoma UK’s aim is to achieve the best possible
standard of treatment and care for patients with sarcoma.
It does this through:
Funding scientific and medical research into causes and
treatments
Delivering a range of support and information services
covering all aspects of sarcoma
Raising awareness of sarcoma amongst the public,
healthcare professionals and policy makers
Campaigning on behalf of sarcoma patients for
improved treatment and care
Sarcoma UK relies on voluntary donations and
fundraising activities to fund its work
Sarcoma UK is staffed by a small team, managed by
a board of trustees (many with personal experience of
sarcoma) and supported by experts in the sarcoma field
Sarcoma UK works collaboratively with doctors, nurses,
researchers and other cancer charities
•
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•
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Impact
Research
Sarcoma UK has funded over £355,000 of scientific and
medical research since 2009. Grants have been awarded
to leading scientists, researchers and clinicians in centres
of excellence around the UK
Support
Sarcoma UK runs three email support groups – for
patients, carers and patients with gynaecological
sarcomas. Subscribers chat to each other by email and
gain valuable support from other patients in the same
situation. In a recent survey of subscribers, respondents
overwhelmingly found the postings on the site informative
Sarcoma UK provides support to 10 local sarcoma groups
around the UK, and helps new groups to get set up
Sarcoma UK has active Facebook and Twitter pages
where sarcoma patients, family members and carers are
able to communicate with each other in a social online
environment – join us today!
Information
Sarcoma UK’s patient information is rated highly
amongst patients and healthcare professionals. Almost
50,000 leaflets about sarcoma are sent out to individuals
and hospitals each year
Awareness
Connect (Sarcoma UK’s publication) is sent out three
times a year and distributed to a database of 5000
Campaigning
Sarcoma UK is an active member of Cancer 52 (the
alliance of charities representing less common cancers)
and the Cancer Campaigning Group (the alliance of
cancer charities representing ‘third sector’ interests in the
delivery of cancer services)
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Connect
• Sarcoma UK • Summer 1 2
W
elcome to our Olympic edition of
Connect! London 2012 has significantly
raised the profile of sarcoma. Four
inspirational supporters with personal experience
of sarcoma had the honour of carrying the Olympic Torch. Pippa, Jordan, Jo
and Paul’s mission: to increase the public’s knowledge and understanding
of sarcoma. Read about their once-in-a-lifetime achievement on page 4.
Vicki Aggar, a sarcoma survivor, former athletics and rowing world
champion and now athlete services manager of the GB British Paralympics
squad, shares her amazing story on page 10. Vicki knows at first hand
that in order to achieve excellence, you must have a clear vision and a
plan setting out what you will do to achieve your goals. This is exactly our
culture at Sarcoma UK. We will develop a strong vision for the future, and
a clear pathway to maximise our impact and make a bigger difference to
the lives of people affected by sarcoma. I ask you to take five minutes to fill
out the enclosed survey or online at www.sarcoma.org.uk.
As well as having clear goals, athletes constantly monitor and check their
individual performance so that they know whether they are on track for
achieving the gold medal. Sarcoma UK is no different. It is vital that we
report on what we have achieved and exactly how your money has been
spent. Our Annual Review for 2010-2011 is published this September –
download it from our website.
Summer has been a time to look back on what our charity has already
achieved, as well as looking forward, in order to grow and improve the lives
of even more of you touched by sarcoma.
Best wishes
Lindsey Bennister Chief Executive
What is sarcoma?
Sarcomas are rare cancers that
develop in the supporting or
connective tissues of the body such as
muscle, bone, nerves, cartilage, blood
vessels and fat.
are around 3200 new cases of
• There
sarcoma diagnosed each year in the UK
account for about 11% of
• Sarcomas
childhood cancers and about 14%
of cancers in teenagers
sarcomas (about 55%) affect
• Most
the limbs, most frequently the leg.
About 15% affect the head and
neck area or are found externally
on the trunk, while the remainder
will be found internally in the
retroperitoneum (abdominal area)
Types of sarcoma
Sarcomas fall into three broad
categories:
There are around 70 different
sub-types of sarcoma within these
broad categories. These sub-types
are determined by the tissue of
origin (the tissue in the body where
the tumour originally formed),
genetic characteristics or by other
molecular analysis undertaken by
expert pathologists.
The most common sub-types are:
Soft Tissue • Leiomyosarcoma
• Fibromyxosarcoma
• Liposarcoma
stromal
• Gastrointestinal
tumour (GIST)
sarcoma (KS)
• Kaposi’s
• Angiosarcoma
peripheral nerve
• Malignant
sheath tumour (MPNST)
• Synovial
• Myxofibrosarcoma
• Rhabdomyosarcoma
• Desmoid tumour
• Soft tissue cancers
Bone
• Primary bone cancers
• Osteosarcoma
Gastro-intestinal
stromal
tumours
• (a type of soft tissue sarcoma found • Chondrosarcoma
sarcoma
• Ewing’s
Chordoma
in the stomach and intestines
• Giant cell tumour (GCT)
commonly known as GIST)
•
www.sarcoma.org.uk
Awareness
Sarcoma Awareness
Week 2012
Thank you to all of you who supported ‘The Many Faces of Sarcoma’
online community
O
ver 300 of you got involved:
patients, carers, friends,
family and healthcare
professionals uploaded your photo on
to our website
www.sarcoma.
org.uk – we are
overwhelmed at
the response and
impact of messages
in supporting one
another.
You helped us raise
awareness of sarcoma
and put a face to
anybody touched
by this rare cancer.
Please take a moment
to browse the photos
– there’s still time to
upload yours!
Lauren Armstrong
takes the leap!
Emily 28,
cardiac angiosarcoma... fuas! x
We are also delighted that 14
supporters rose to our skydive
challenge – raising £6,500 –
what a fantastic effort,
thank you!
Lauren Armstrong took the
leap to support her mum.
She said: “It was a terrifying
Isaac &Harriet 2,
experience but one totally
Supporting Granny with LMS
worthwhile to raise money for
a cause close to my family’s
heart. Shout out to my mum and the
Sheffield Sarcoma Support Group
as we wanted to raise awareness for
Sarcoma UK.”
Many of you got together with friends
and family to organise a fundraising
event during Awareness Week. Take
a look at our community fundraisers’
stories on page 7 – be inspired!
Sarcoma Awareness Week 2013: 17-23 June
Scott 38, fighting
pleomomorphic liposarcoma..yeh!
Conquer Kilimanjaro!
Step up to our Sarcoma Awareness Week challenge and raise much needed
funds for our charity. Put the enclosed poster up on your school, work
or club notice board.
Located on the north-eastern tip of Tanzania, Mount Kilimanjaro is
one of the world’s highest peaks and the setting for a truly amazing
charity trek! Kilimanjaro (Tanzania)
20th - 29th June 2013 Deposit: £449
Sponsorship level: £4,150
Book online today: http://sarcoma.org.uk/fundraisingevents
or email info@sarcoma.org.uk for more information.
www.sarcoma.org.uk
Connect
• Sarcoma UK • Summer 1 2
3
London 2012
Carrying the torch
They may have finished carrying the Olympic torch, but our
sarcoma torchbearers are still keeping the flame burning and
raising money for sarcoma cancer research. Not only did they
represent their nation, they represented everybody in the
sarcoma community and we are very proud of them all
Jordan Anderton, 18 • 20 May
When I was nominated to carry the
Olympic torch by my mum’s friend
and co-worker Louise Parker, I never
thought I’d be chosen. Living in
Plymouth, the event on May 20th
would be Day 2 of the relay and
Olympic fever would be at its height.
When I received the call to say I’d
been selected, it’s not surprising I
didn’t believe it. I had to ask them to
repeat it twice!
After being diagnosed and treated
for a myxoid liposarcoma on my
left knee when I was just 14, I began
raising money for Cancer Research UK,
Teenage Cancer Trust and Sarcoma
UK. One event, Relay For Life, raised
£86,000. Even so, carrying the Olympic
torch was the best day of my life.
I had the best bit because my torch
got lit by the lantern, so I held the
torch longer than the others. I started
off walking, then I started running
because I saw my friends and they
were cheering for me. The route was a
little bit downhill so I started running
faster than I thought and it went by
quite quickly!
Everyone who takes part in the relay
is given a replica torch as a memento
of the day. I took the opportunity to
tour my torch around local primary
schools and so far, have raised £250.
One girl was really excited to see the
torch, she was jumping up and down.
It makes you remember how cool and
special it is. Now when these kids see
the torch on television they can say
they’ve held it!
4
I work in a bar and I served a
Connect
• Sarcoma UK • Summer 1 2
girl the other day, who said she
recognised me from the television,
and that I was the one who carried
the torch! Then she said it was nice to
meet me. That was really surreal. It
made me realise that she must have
really looked at me!
Paul Barden, 51 • 7 July
My wife, Helen Patterson, was
diagnosed with metastatic deep softtissue angiosarcoma in March 2011.
Helen was a consultant oncologist
with a PhD in sarcoma molecular
genetics: no one could know more
about their disease.
Helen was treated with radiotherapy
and chemotherapy and did well at
first, I nominated her to carry the
Olympic torch, in recognition of her
charity fundraising as well as the
outstanding care she gave to her
patients, and we were both delighted
when the nomination was accepted –
Helen was booked to carry the torch
in Newport, Essex, on July 7th. Helen
was still quite well in February, and we
had a successful family skiing holiday,
but by March the cancer was no longer
controllable. Helen died on 18th April.
From left to right:
Jordan Anderton,
Paul Barden...
crowds, torch held high. The route
was packed with cheering spectators
braving the rain. My run had been
increased to 600m at short notice, and
I wasn’t sure where my family would
be, but near half way there they were.
I veered to the side of the road to
hug our children, scaring the security
guards who kept their cool. Back on
course the torch was getting heavy. I
kissed my wedding ring, held the torch
high, and ran on. It seemed to take
forever, but still not long enough, to
reach the next runner. We lit his torch
from mine, and the officials hustled
me onto the waiting bus.
Back at base, the sun came out
again. I walked half a mile to where
I’d parked my car: it took nearly an
hour as I stopped for passers-by who
wanted to be photographed with
the torch. The event had caught
the public imagination, and it was a
special way to remember Helen.
I was thrilled to be told that I would
be able to carry the torch in Helen’s
memory. There was a bus to take the
torchbearers to our starting points;
we were not far away when the
heavens opened and the sunshine
changed to driving rain.
Jo Bryant, 29 • 17 July
The rain made the experience all
the more memorable. The torch lit
up easily enough even in the wet;
I struggled out of the official plastic
poncho, and set off waving to the
My graduation coincided with
London winning the Olympic bid
and that was when I decided to try
my hand at a career in sports events.
So, off I went, down to London
After leaving university in 2005 I was
a little lost as to what to do next. The
only thing I knew I loved was sport.
www.sarcoma.org.uk
London 2012
and set about making my dream of
working at the Olympics a reality.
Six years of working in the sports
industry and with only one year to
go to the Games, excitement was
building. But, for me, it was not
meant to be. In February 2011, aged
28, I was diagnosed with a cardiac
sarcoma in my left atrium.
Since then, I have undergone open
heart surgery twice and battled
with two rounds of chemotherapy.
Although I had a brief period of
remission, the disease returned and
spread to my lungs.
With my dreams of working at the
greatest sporting event on the planet in
tatters, you can imagine my joy when
I was asked to carry the torch through
Crawley on Tuesday 17 July, day 60 of
its journey around the country.
Pippa Hatch, 17 • 20 July
Cancer... a word I tried not to give
much thought to. It was something
that happened to older people, never
anyone my age, but how wrong
was! Following around 18 months of
repeated visits to our local doctor’s
surgery, I was eventually diagnosed
with a rare form of sarcoma known
as Paediatric Wild-type GIST (Gastro
Intestinal Stromal Tumour).
Following my nomination by Sarcoma
UK, I received the amazing news
that I’d been selected as one of the
8,000 torchbearers to take part in the
London 2012 Olympic Torch Relay,
which was not only a huge honour,
but extremely exciting!
Crowds lined the route, with children
waving their own homemade torches.
There were chants of “Go JB” from
friends that had come to watch. I
ran the whole 0.3 miles, quite an
achievement these days from this ex
marathon runner. A once in a lifetime
experience, which is difficult to put
into words.
I didn’t expect to be nervous, but
when it dawned on me that I was
going to be the only person in the
world carrying the Olympic Flame
later that afternoon, I suddenly
realised that everyone would be
watching. We arrived in Ascot to
first meet the other torchbearers,
as well as the jockey Frankie Dettori
and athlete Denise Lewis who were
the celebrities accompanying us that
afternoon (it was also here that I got
to learn that I’d been chosen to take
the flame from Frankie!).
Thank you so much to Lloyds TSB for
making it possible.
It was the most incredible feeling and
I will never forget the atmosphere:
www.sarcoma.org.uk
...Jo Bryant and
Pippa Hatch
over 20,000 people were there
cheering me on as I ran with the
flame, including over 60 friends and
family who had come to support me.
It was lovely to be able to share part
of my experience with them all.
The following day I was invited
to a local primary school to show
the children the torch. Each year
group had nominated one of their
classmates to take part in their very
own Torch Relay.
As part of the lead up to my
‘Moment to Shine’ I was also offered
an incredible opportunity to take
part in a professional photoshoot
and interview for Olympic Review
Magazine, the official quarterly
publication produced by the
International Olympic Committee.
The photoshoot took place in London
and was a brilliant day. The same
photo is used on the front cover of
this edition of Connect!
I wish I could do it all over again. I
am very grateful to Sarcoma UK for
nominating me and would like to say
how much I appreciate all they have
done to support me and my family. I
would also like to say a massive thank
you to “TEAM GIST” for all they do to
help me raise awareness and funds for
Sarcoma UK, and for supporting me
throughout my cancer journey.
Connect
• Sarcoma UK • Summer 1 2
5
Personal experience
A carer’s perspective
What have Wendy Watkins and six million people in the UK got in common? They care for people, through
sickness and in health
L
ife for us changed late in the
night of March 2011, when my
husband Derek was taken to
hospital with what I now know to
be ‘the rigors’. He was freezing cold,
couldn’t stop shaking and by the time
I joined him in A&E he was crying
with pain. It turned out that a tumour
the size of a melon had burst through
the wall of his bowel and he needed
immediate surgery. We’d had no
warning.
I went into robotic mode. I was on
top of everything, absolutely on
top of everything. One of the few
times I cried was when he was in
theatre because I knew he might not
come out, or if he did he might have
a colostomy bag. Derek was also
worried because the operation would
cut through his stomach muscles and
might mean the end of his career –
he’s a musician, an internationally
renowned trumpet player. It was
horrible.
6
to be 70 before I die’. And I say, ‘But
you’re not going to die’. My mother
had cancer 30-odd years ago and was
told she had six months – she’s living
in a nursing home up the road! It was
her attitude. I keep saying to Derek,
‘You’ve got to be determined’. He is,
but he has his black moments.
doctors are worried. We have a
scan booked but they’ve said that
if there’s any pain or anything
like that, they’ll perform an
emergency operation.
We haven’t cried in front of him
ever, haven’t done anything that
would make him feel different. The
music business is like any business,
there are rumour-mongers, so we’ve
been very honest about things
that have been going on, except
the very personal things. He might
Originally Derek was diagnosed with a not get work because people know
myofibroblastic sarcoma, later revised he’s got cancer, it has happened a
bit. But he’s fine, he’s at work. He
to synovial sarcoma. What’s in a
went back to work six weeks to the
name anyway? It’s just as frightening
day after his major operation. He
when attached to the word cancer.
started practising at four weeks, was
He’s receiving treatment at the Royal
Marsden and we are confident that he back doing film work, then a show. I
had people watching his back with
is getting the best care.
emergency numbers all the time.
The Professor just laughs
For three months post
when Derek tells him
operation he was
“If you
what he’s been doing.
symptom free, but
encounter
then the sarcomas
something that you Right this minute
came back. He
had six months
can’t control, there’s it feels like we
are sitting on a
of chemotherapy,
nothing you can do. time bomb. Derek
but two lots
is worried about
of secondaries
You’ve got to roll
providing for me after
appeared, the
with it.”
he dies, making sure
first of which have
I’ve got enough money.
responded very well to
He’s really head down and trying
the chemo. Sadly the second
to work. At the same time I can’t
lot appear to be chemo resistant.
envisage him not being here. He’ll say
There’s a very large tumour that’s
to me, ‘I’m too young to die. I need
pressing on his bowel and the
Connect
• Sarcoma UK • Summer 1 2
Cheryl and
Derek Watkins
at the Brighton
Marathon; and
inset: Wendy
Watkins
Stress-wise, the impact on the
family has been enormous. Derek
was always head of the family,
he’d take care of things, even
when the kids were married.
Him getting ill has taken
the wind from our sails.
Horrendous. I’m still a
mother and I’m sure my kids
are in pain. I know they’re
stressed because I’m stressed,
obviously, but sometimes I just
can’t give them sympathy. I haven’t
got it, I’m running on low. Sometimes
I feel I’m being unkind. I almost have
to turn around, and I don’t, I try to do
it in a tactful way, to say ‘Leave me
alone. I can’t take your problems on. I
know he’s your dad, or your grandad,
or your best mate, but I can’t take on
your problems because I’m just about
coping with mine’.
I think there is a need for something
along the lines of a sarcoma nurse
to be there for carers. The sarcoma
nurse made it clear that she was
there for Derek, for me as a sideline.
They would talk and listen and have
the knowledge of what is going on
for the patient. So when Derek starts
saying, ‘I’m not going to live for long’,
I can ask the nurse if there is anything
specific that I should know? How do
I cope with that kind of talk because
I find it terribly negative? Am I being
hard on him? I don’t want to be
hard on Derek by saying, ‘Don’t be
so downbeat, you haven’t only got
a year left’. I need to support him. A
specific place or person to go to for
carers would be really helpful. I know
there’s Carers UK but I’m talking
www.sarcoma.org.uk
Fundraising
specifically about cancer. Having
cared for my mother who has vascular
dementia, it’s different. When
you care for somebody who has a
potentially life-threatening disease
it’s different to coping with someone
with an age-related condition.
Last year I was on a diet with
Slimming World and I was doing
really well. I’m an asthmatic so I have
to be careful about my weight. But I
gave up Slimming World when Derek
became ill and I’ve only just restarted
it. It’s indicative of the things you do
for yourself as a carer that you let go
or ignore. Personal care for at least a
year went by the wayside. A diet – I
really couldn’t take it on. Going to
the cinema with friends, I kind of
withdrew. The world got smaller.
But I think that kind of goes with
the territory because there’s only so
much you can hold in your head.
If I stop and analyse it, it’s very
complicated. If I stop to think for
a moment about what he’s going
through and what might happen... I
mean, I cry at the daftest things on
the telly, which I never used to do.
I haven’t read a book for goodness
knows how long because I can’t
concentrate. I’ve got self help books
up to the ceiling and they just
weren’t read. Concentration goes.
That’s why it’s nice to go on holiday.
We’d booked to go to Venice two
weeks after he was taken ill last year.
Obviously that had to be cancelled.
He keeps saying, ‘We’ll get there’ and
I believe we will.
My daughter in law, Cheryl, ran the
Brighton marathon this year for
Sarcoma UK and raised nearly £6,500.
Through going into the studios Derek
has blagged a lot of money from the
musicians. And the guy who runs
Derek’s website designed a t-shirt for
Derek and for every t-shirt they sell,
£2 is going to Sarcoma UK. Last week
he put in £56... we’re all chuffed to
bits about it!
It’s my maxim that if you encounter
something that you can’t control,
there’s nothing you can do. You’ve
got to roll with it. No point in getting
bitter and twisted.
www.sarcoma.org.uk
Personal challenges
Sarcoma Awareness Week was celebrated by the nation, with many of you
taking up a personal challenge or putting on events to raise funds and raise
awareness of sarcoma cancer. Hear first-hand from our supporters and what
motivated them
Fun run, no sun!
When the idea came that the London
Sarcoma Service would run 5km
on 24 June to support Sarcoma
Awareness Week there was concern
that the heat might wilt their running
efforts. No need to have worried as
some members of the team donned
beanie hats and long sleeved running
tops to try and keep warm! That said,
spirits certainly weren’t as damp as
the weather and all embraced the
challenge. Representatives from
across the disciplines including
Oncologists, Occupational
Therapists, Physios, Surgeons and a
huge effort from histopathology led
to a squad of 20 runners raising in
excess of £500 for the charity and
with t-shirts worn, balloons being
waved by spectators and a very
public team photo, awareness
was certainly raised in
Finsbury Park. Well done
to all who took part!
Abby McCarthy
£10,000. Knowing that all this
walking was raising funds for
Sarcoma UK really underpinned
everything, making it one of
the most rewarding things I’ve
ever done.
Guy Hinton
The Nightrider
Guy Hinton
embarks on his
challenge
Best foot forward
9 May, 10.30am, I set off
from Monginevre in the French
Alps and headed east. 44 days later,
I arrived in Rome having walked
around 570 miles along the Via
Francigena, the medieval pilgrims’
route through Italy. In between, I saw
some wonderful scenery, met many
lovely people, stayed in charming
monasteries and ancient hostels, ate
too much ice cream and generally
had a wonderful experience. I wanted
to raise money for Sarcoma UK in
memory of my fiancée Federica,
who died last summer. Never having
raised money for a charity before, I
was overwhelmed and touched by
the generosity of friends, family and
especially those I’d never met. As of
mid-July, we’ve raised over nearly
London Sarcoma
Service fun
runners
Team GIST
Heading off through SouthEast London close to
midnight was pretty brisk
with fresh legs and a heap of
adrenaline, tempered with the
knowledge that there were
over 60 miles to cover. Ahead was a
stream of strobing red tail lights and
orange vests, bunching up at traffic
lights and thinning out again in
between. There were bits of London
we’d rather not see again – anyone
else on the ride will know what we
mean – but cycling through the
blue-lit arches of Tower Bridge, the
sight of dawn breaking over the
city from the terrace at Alexandra
Palace and the early morning
sunlight on the Thames from
Waterloo Bridge wiped all that away.
As if the climb to “Ally Pally” wasn’t
tough enough, North London,
we found, is in fact a largely
mountainous region where bikes
probably shouldn’t go – Highgate
Connect
• Sarcoma UK • Summer 1 2
7
Fundraising
Support Group Spotlight
London
Sue Harris checks out her
local group
I
The rowing challenge at Chequers shopping centre
deserves its name! Soon we were riding
across the cobbles in Covent Garden,
through the West End under endless
Union Jacks and finally over Chelsea
Bridge before the final uphill
stretch back to Crystal
Palace.
over £5,000. Thank you to everybody
involved!
Selina Lawrence
Great North Swim
My husband Jim is truly
inspirational. I am so proud
Definitely a night to
of him; words simply are not
remember for all the
enough. This is the second
right reasons. Would
significant health issue he
I do it again? Hmm –
has had. He was diagnosed
maybe your turn! (You
with an insulinoma back
can register for Nightrider
in 2007 having been wrongly
Dina Coldwell diagnosed for six years previous as
2013 at www.nightrider.org.uk).
On behalf of TEAM GIST 2012,
being epileptic. Following major
thank you for your support!
surgery, all was going well. He lost six
Nick Keir - Team GIST
stone and discovered running, however,
an innocuous ‘ganglion’ cyst turned
out to be a highly malignant synovial
sarcoma. He underwent surgery
Bobbies on the beat!
removing four bones from his wrist and
As a course of 20 Kent Police probationers
replacing with fibular bone, followed by
we chose to raise money for Sarcoma
a course of radiotherapy.
UK after a close friend and colleague of
ours was diagnosed with sarcoma. We
He is an amazing man and wonderful
arranged: a cake sale; a charity Cinema
dad to our two young boys aged 4
Night and raffle and a fitness challenge at
and 1. I just hope whatever I can raise
the Chequers Shopping Centre. Twenty
from the Great North Swim can in
Student Officers competed against the
some way go to help eradicate this evil
Chief Constable of Kent Police and his
that had robbed so many people of so
team. Each team rowed 11 miles, and
many things.
cycled 35 miles. Finally, I completed a
tandem skydive. Altogether we have raised
Dina Coldwell
Book today for Sarcoma UK!
London - Brighton
Cycle
Great South Run
Santa Run
28 October 2012
9 December 2012
16 September 2012
Location: Portsmouth
Registration: £40
Sponsorship: £400
Distance: 16km
Location: Greenwich Park
Registration: £20
Sponsorship: £100
Distance: 5km/10km
Registration: £70
Sponsorship: £100
Distance: 86km
8
Email info@sarcoma.org.uk for more information
Connect
• Sarcoma UK • Summer 1 2
’d been saying to myself for ages that I
wanted to go to the monthly Sarcoma
Support Group meetings, but somehow
they always coincided with chemo days or
when I wasn’t
feeling too
good. Then I
got the latest
email, for
the Sarcoma
UK dinner
event at the
Maggie’s
Centre,
Charing Cross
Hospital, and
for once the
timing was
perfect.
Sue and her partner Neil
I don’t really know what I expected, but I
was surprised and impressed by the number
of people there. Some, like myself, were
cancer sufferers, others were partners and
carers, but there must have been 20 people
present.
We were quite late in arriving but we were
made to feel very welcome. Cancer can
make you feel very alone: no-one really
understands what it’s like to live with
this every single day unless they have
experienced it themselves, and suddenly,
here I was, with a whole group of people
who knew exactly what it’s like. To hear
the struggles that people had overcome
was inspiring, and just to sit and chat
with fellow sufferers was uplifting. I
think it was important for Neil too: all
too often, the carers are just left to cope
as best they can whilst us patients have
the benefit of an entire medical team
watching our every move, so to speak.
For the first time, Neil met other people
in the same position as him, people who
have to sit and watch while we go through
whatever it is we need to go through, and
I think he found it both reassuring and
comforting. Thank you!
www.sarcoma.org.uk
Support groups
Join the sarcoma community!
Contact
vicki.smith@
sarcoma.org.uk for
help with marketing
materials like leaflets
and banners for
your area.
Scotland - Glasgow
Meets: Third Wednesday of every month, 2.30 – 4pm
Venue: Maggie’s Centre, Gartnavel General Hospital,
1053 Great Western Road, Glasgow G12 0YN
Dawn Currie, Sarcoma CNS, 0141 301 7599
Fiona Murdoch, Maggie’s Centre, 0141 330 3311
(Mon-Tues) or 0141 357 2269 (Weds-Fri)
Newcastle and Tyneside
Meets: First Monday of every month, 7 – 10pm
Venue: Function Room, Education Centre, Freeman’s Hospital
Cuth Earl, Group secretary, 0191 520 1824
E: cuth_earl@yahoo.com
Manchester
Meets: Last Tuesday of Jan, Mar, May, Sept and Nov, from 7pm
Venue: Manchester Royal Infirmary, Seminar Room 1 (adjacent to Ward 1)
Contact: Lena Richards, Specialist Sarcoma Physiotherapist at the Christie
0161 446 3795 and 0161 446 3000 (bleep 12539)
Ann Buchan, Sarcoma Clinical Nurse Specialist at the Christie
0161 446 3094 or 0161 446 3000 (bleep 12906)
Helen Murray, Sarcoma Clinical Specialist Nurse at the MRI
0161 276 6167 (Pager 07659 537596)
Maxine Cumbo, Specialist Sarcoma Physiotherapist at the MRI
0161 701 0267 or 0161 276 1234 (bleep 1954)
Sheffield (and surrounding areas)
Meets: Second Friday of Jan, Mar, May, July, Sept and Nov,
afternoon and occasionally evening
Venue: Cancer Support Centre, 23 Northumberland Road, just behind
Weston Park Hospital, Sheffield or Royal Hallamshire Hospital
Contact: Maxine Eades, Clinical Support Nurse
E: maxine.eades@sth.nhs.uk
Merseyside and Cheshire
Meets: 3 - 4 times a year, 4-6pm
Next Meeting - Tuesday 4 September 2012
Venue: University of Liverpool Cancer Research UK Centre,
200 London Road, Liverpool L3 9TA
Sarah Massey, Acting Sarcoma Nurse Specialist, 0151 7065997
E: mcsarsup@gmail.com
East Midlands (and eastern counties)
Meets: Third Tuesday of every month, 5 – 7pm
Venue: Helen Webb House, 35 Westleigh Road, Leicester, LE3 0HH
E: emssg@live.co.uk
Oxford (inc Thames Valley, south and parts of south west England)
Meets: First Thursday of every month, 2-4pm (Contact below for room info)
The Oxford Centre for Enablement (OCE), Nuffield Orthopaedic Centre,
Windmill Road, Oxford OX3 7HE
Pip Large, 01865 737861, philippa.large@ouh.nhs.uk
Helen Stradling, 01865 738282, helen.stradling@ouh.nhs.uk
W: www.oxfordsarcoma.co.uk/2011/01/oxford-sarcoma-support-group-2011
Bristol and South West England
Meets: Third Monday of alternate months, 17 Sept & 19 Nov, 4 - 6pm
Venue: Jones Lang LaSalle (Boardroom), Berkley Square, Clifton, Bristol BS8 1HU
Leigh Collins, Saroma CNS, 0117 342 4849, leigh.collins@UHBristol.nhs.uk,
Chris Millman, Sarcoma CNS, 0117 340 3381, christine.millman@nbt.nhs.uk
Website: www.bristolsarcomasupport.co.uk
London
Meets: Alternate first Weds and Thurs (once a month), 4 – 6pm
Venue: Weds - Ground Floor Physio Gym in The Markus Centre, Royal
Marsden Hospital, London SW3 6JJ. (NB: Easiest access to this.)
Venue: Thurs – The Seminar Room, RNOHT, Central London Outpatient
assessment Centre, 45 Bolsover Street, London W1W 5AQ
W: www.londonsarcomasupport.net
South of England
Exeter
Next date to be confirmed, likely to be in October. 10.30 - 12.30 am
Venue: FORCE cancer centre, Corner House, Barrack Road, Exeter EX2 5DW
Contact: Robert Oliver, 01392 406 151
Meets: 12 Sept; 14 Nov, 2 – 4pm
Venue: Wessex Cancer Trust, Bellis House,
11 Westwood Road, Southampton SO17 1DL
Louise Sharif, Sarcoma Clinical Nurse Specialist
07769 234598 and 02380 796752
E: louise.sharif@suht.swest.nhs.uk
Always check with your local group direct before attending, in case details have changed.
This information is provided by the individual support groups and is the latest we have received from the groups.
www.sarcoma.org.uk
Connect
• Sarcoma UK • Summer 1 2
9
News
News round-up
The latest sarcoma-related news from around the country
Vicki Aggar: sarcoma
survivor and paralympian
metres athletics at the World
Amputee and Wheelchair
Games at Rio de Janeiro.
A sarcoma survivor who was once
told she had just months to live, but
miraculously recovered to become
a paralympian and multiple world
champion, is now responsible for
helping other ParalympicsGB athletes
fulfil their dreams at London 2012.
She then switched sports
and went on to win
gold at rowing’s 2006
World Championships at
Dorney Lake, Eton, in the
LTA mixed coxed four. An
incredible career also brought her
a bronze medal at the Beijing 2008
Paralympics before she retired after
winning another gold in the adaptive
mixed coxed four at the 2009 World
Championships in Poznan, Poland.
Inspirational Vicki Aggar, 32, was just
21 years old when doctors gave her
the devastating news that the golf
ball-sized lump in her right heel was
synovial sarcoma and that it
had spread to her lungs.
Having been given a less
than 5% five-year survival
prognosis by her medical
team, the then Vicki
Hansford initially chose
to forgo any treatment or
surgery and recalls that she
spent the next 12 months
“planning my funeral and
blowing the house deposit I
had saved on a trip to Australia”.
But her first follow-up tests one
year after diagnosis showed that the
sarcoma had not advanced, so Vicki
had a lower leg amputation in March
2004 followed by surgery to remove
the lower lobe of her right lung.
A talented teenage athlete, Vicki
immediately threw herself back into
sport post-surgery and while working
at the University of Surrey in sports
administration was accepted into the
sprint training squad of legendary
coach Margot Wells (wife of Olympic
champion Allan Wells). “Sport gave
me a lot of confidence after my
surgery,” she recalls. “Initially when
I was going for a run with a carbon
fibre leg I was quite self-conscious
and uncomfortable but after a while I
started not to think about it.”
10
Within 18 months of her surgery
Vicki won a gold medal in the 100
Connect
• Sarcoma UK • Summer 1 2
The rowing training Vicki undertook,
a similar programme to the stars of
Team GB’s Olympic squad, was so
intense that chest x-rays showed that
Vicki’s right lung had grown bigger
than it had ever been pre-surgery.
Vicki Aggar at
the 2006 World
Championships
Now as athlete services manager
of the ParalympicsGB team, Vicki is
responsible for the welfare of a hugely
talented squad that includes Vicki’s
husband, the Paralympic and world
champion rower Tom Aggar.
“I’ve always been a driven person but
I’m probably more determined than
ever now, because life is too short,”
says Vicki. “In those early, dark days
I never believed I’d ever be happy
again. It may sound a cliché but I
can honestly say I’m now living the
happiest days of my life.”
Penny Brohn
Cancer Care centre
Chapel Pill Lane
Bristol
BS20 0HH
Helpline
0845 123 23 10
Being diagnosed with cancer isn’t a
money spinner so my ears pricked up
when a friend said the magic words
regarding cost: ‘voluntary donation’. I
rang up and booked places for myself
and my partner on the two-day
residential workshop ‘Living Well
with the Impact of Cancer’. I was
looking forward to talking to other
people who have cancer, and I was
All hands on deck
We are pleased to introduce Maya
Wiles, our new Administration
Assistant. Maya deals with
general enquiries, research grants
and fundraising. With a degree in
Maths and an attitude to really
make a difference, we are
very excited to have
her on board! Scuba
diving, cycling
and live music are
a few of Maya’s
hobbies.
pleased that my partner’s
thoughts and feelings would
be given the same weight at my own.
I had heard of the Bristol Approach
to cancer, which I understood to be
nutritional. I didn’t realise it was a
total mind, body and spirit approach
and I certainly didn’t realise how
organised the centre had become in
its 32 years of service.
The centre itself is modern, clean
and offers couples separate rooms, if
wanted. The grounds are landscaped,
there is an art room, quiet areas for
contemplation, a devotional room
for prayer or contemplation, a library
and many areas for socialising. The
kitchen provides healthy meals and
snacks throughout the day.
The ‘Living Well with the Impact
of Cancer’ workshop is broken
down into seven components that
range from nutrition to finance
to relaxation. The experience was
both relaxing and informative and
back in London I do use some of the
techniques we were taught.
Linda Gibson
23&Me 1,000 strong!
This international philanthropicallyfunded study is looking at the
genetics of sarcoma. They recently
announced that they have hit their
1,000 participant from the sarcoma
community! A huge thank you to
everyone who helped reach their
target. Visit www.23andme.com
for updates.
www.sarcoma.org.uk
Research
Clinical trials in sarcoma
If you feel that a clinical study might be of value you should talk to your doctors.
Most of the trials below are multicentre studies.
See our website for more information: http://sarcoma.org.uk/Looking-for-research-to-join
Trial Name
Description
Status
ADULT SOFT TISSUE SARCOMA
VORTEX
Phase III randomised trial - volume of post-operative radiotherapy in adult extremity soft tissue sarcoma
Open
VORTEX
BIOBANK
Prospective sample collection for the VORTEX randomised radiotherapy trial
Open
TRUSTS
(EORTC62091)
Phase III study of the safety and efficacy of trabectedin versus doxorubicin-based chemotherapy in first line
for patients with untreated metastatic or advanced sarcoma. (Only open in Manchester)
Open
Axi-STS
Axitinib in patients with advanced angiosarcoma, leiomyosarcoma or synovial sarcoma (other arms now
closed): a phase II open-label parallel-group (non-randomised) study
Open
CASPS
Phase II study of cediranib (AZD2171) in the treatment of patients with alveolar soft part sarcoma
Open
STRASS
(EORTC62092)
A phase III randomised study of preoperative radiotherapy plus surgery versus surgery alone for patients with
retroperitoneal sarcoma (RPS)
In set up
PARAGON
Phase II study of aromatase inhibitors in women with potentially hormone responsive recurrent/metastatic
gynae cancers including sarcomas
Open
ULMS adjuvant
study
Adjuvant chemotherapy in patients with high-grade uterine leiomyosarcoma. An international study with
NCI(US), EORTC and NCRN (UK)
In set up
PICASSO
A study to evaluate the clinical benefit of palifosfamide tris administered with doxorubicin in combination,
compared with single-agent doxorubicin for patients with unresectable or metastatic soft-tissue sarcoma
Closed
ERIBULIN
(NCRN313)
A randomised open label phase III study to compare efficacy of eribulin versus dacarbazine in third line for
patients with advanced soft tissue sarcoma
Open
Adults and young people soft tissue sarcomas
GeDDIS
Phase III randomised – gemcitabine+docetaxel compared with doxorubicin as first line treatment in previously
untreated locally advanced, unresectable or metastatic soft tissue sarcoma. Eligibility age 13 +
Open
VIT
Phase II randomised study of vincristine and irinotecan plus/minus temozolomide in advanced
rhabdomyosarcoma patients aged <50 years
In set up
Paediatric soft tissue sarcomas
EpSSG RMS
2005
Treatment of children with non rhabdomyosarcoma soft tissue sarcomas. Open to adults aged up to 21
Open
EpSSG
non-Rhabdo
Treatment of children with non rhabdomyosarcoma soft tissue sarcomas. Open to adults aged up to 21
Open
BERNIE
A study of avastin (bevacizumab) in combination with standard chemotherapy in children and adolescents with
metastatic rhabdomyosarcoma or non-rhabdomyosarcoma soft tissue sarcoma. Randomised phase II design
Open
primary BONE SARCOMAs
EUROEWING 99
Multi-modal therapies treating patients with Ewing’s sarcoma
Open
EUROEWING 2012
Study of treatment for patients with newly diagnosed Ewings family tumours
In set up
EURAMOS 1
Phase III – strategies for resectable osteosarcoma based on response to pre-operative chemotherapy
Closed
OTIS
Phase II study to determine the efficacy and safety of conventional dose pral treosulfan in patients with
advanced pre-treated Ewing’s Sarcoma
Open
Denosumab
GCT
Safety study of denosumab in patients with recurrent or unresectable giant cell tumor of bone
Open
www.sarcoma.org.uk
Connect
• Sarcoma UK • Summer 1 2
11
Research
Treating advanced sarcoma
Choices for doctors treating advanced sarcoma are growing, says Roger Wilson
I
t has been an important part of
our charity work to track and
support what is happening to
develop new treatments for those
who face advanced disease. Surgery
and radiotherapy have a role to
play, especially for disease which is
localised to one area, and they can
in some instances cure advanced
disease, but chemotherapy is the
mainstay of treatment.
Chemotherapy is known as a
‘systemic’ treatment because it
treats all parts of the body, looking
for tumour cells to kill. Because of
this indiscriminate activity there can
be quite unpleasant side-effects. The
two chemotherapy drugs most often
used in sarcoma are doxorubicin and
ifosfamide. These are readily available
to oncologists and will be the ones
first used to treat a patient.
If there is no response, or if the
patient relapses after treatment
with these drugs, at one time there
was little choice left. Now we have
Trabectedin (Yondelis – Pharmamar)
for many sarcomas, though not for
bone or for all soft tissue tumours.
It was only four years ago that
trabectedin was licensed by the
regulators and it took almost another
year to persuade NICE that the
NHS should fund it for sarcoma
treatment.
use in sarcoma, though again it is
not recommended for all sarcomas.
We are hoping that this summer will
see the drug quickly made available
to oncologists once it is licensed by
the EU. The Department of Health
has decided not to refer pazopanib
to NICE because it is already
available to kidney cancer patients.
This means that regional funders are
asked to support the drug through
the Cancer Drugs Fund set up two
years ago.
12
Now another new drug will shortly
become available. The European
Medicines Agency (EMA) has
recommended that pazopanib
(Votrient – GSK) is licensed for
Connect
• Sarcoma UK • Summer 1 2
Genomic and
expression profiling
of recurrent well
differentiated and
dedifferentiated liposarcomas
Researchers: Dr Janet Shipley,
Dr Anastasia Constantinidou
Grant award: £25,000
Duration: 2012 – 2014
Pazopanib is technically known as a
‘targeted therapy’, as opposed to a
chemotherapy. It is taken orally – a
pill a day – so it requires less hospital
treatment. It is one of the new
generation of therapies that aim to
stop cancer cell growth by limiting
the activity of certain proteins
present in cancer cells. These proteins
act as stimulants, sending signals to
cells in the tumour to multiply or
stopping them from dying naturally.
This approach works well with GIST,
a gastrointestinal sarcoma. A drug
known as imatinib (Glivec – Novartis)
is now standard of care worldwide
for patients with advanced disease
and sunitinib (Sutent – Pfizer) is
also available for GIST patients who
develop further problems. However
clinical trials have shown that neither
of these drugs works in the wider
group of sarcomas.
What first piqued your interest
in sarcoma research – and what
keeps it going?
For some specific sarcomas
there are other drugs available
and in clinical trials. Often
these are drugs which work well
in more common cancers and
the signalling proteins that they
target are present in just one specific
sarcoma.
How long have you had your own
Sarcoma Molecular Pathology
Team and how would you like to
see it develop?
“Surgery
and radiotherapy
have a role to play,
but chemotherapy
is the mainstay of
treatment.”
Clinical trials of a combination
of two newer chemotherapies
licensed for other cancers,
gemcitabine and docetaxel,
have also resulted in another
option for oncologists and
patients. A current trial is underway
to assess whether this combination
should replace doxorubicin as the first
line of treatment.
I
t is your money that enables us
to fund such high quality research
into sarcoma. Sarcoma UK staff
and Dr. Chris Hiley had the pleasure
of meeting Dr. Janet Shipley and her
dedicated team at The Institute of
Cancer Research. Currently, we are
funding their project:.
This changing world is very welcome.
It offers new challenges for doctors
to decide which treatment is best for
any one patient at any one time but
the sarcoma community worldwide
has become very effective at sharing
its knowledge.
My introduction to sarcomas came
when I was brought into The Institute
of Cancer Research (ICR) many years
ago to provide particular technical
expertise for a research programme
on synovial sarcomas, a rare form of
cancer that usually occurs near the
joints of the arm, neck or leg. As a
biologist, I was immediately struck
by the diversity of sarcomas and
fascinated by their resemblance to a
range of normal tissues. This presents
unique scientific opportunities and
exciting challenges to our work
of understanding the molecular
mechanisms that cause sarcomas.
Our focus is translating these new
discoveries and insights into advances
in patient care, and this is what
continues to drive me.
I have run my own
research laboratory at the ICR for
many years. Through links with the
Paediatrics Unit in The Royal Marsden
NHS Foundation Trust, I have
developed a long-standing interest
in rhabdomyosarcomas, which are
sarcomas that resemble muscle
tissue and are more frequently found
in younger people than adults. In
the last few years, we have focused
our interest more exclusively on
www.sarcoma.org.uk
Research
Where the magic happens...
Ever wondered what goes on in the mind of a sarcoma researcher? Janet Shipley reveals all...
given the scale involved. We can
use this to determine the genes
that are abnormal in particular
sarcomas, which takes us a step
closer to finding new diagnostic
and prognostic tests and also
discovering new drugs related to
these abnormalities that could
ultimately be used to treat sarcoma
patients. This machine is crucial
to our work – so it is my least
favourite piece of equipment
when it breaks down!
rhabdomyosarcomas and other
sarcomas, including those in adults
such as liposarcomas. To reflect this
dedicated focus, we recently changed
our team name from the Molecular
Cytogenetics Team to the Sarcoma
Molecular Pathology Team.
What are the challenges
a sarcoma researcher faces – and
what do you and your team need
to overcome them?
Sarcomas represent around 1%
of all adult cancers and 8% of
childhood tumours, but there are
many types of sarcomas and they
can be quite different in how they
behave clinically, so they need to be
considered as separate entities in
most research investigations. This
rarity means that collecting specific
material for studies is challenging.
We collect the rarer childhood cancer
samples from centres around the
UK through the Children’s Cancer
and Leukaemia Group and for adults
locally through The Royal Marsden’s
Sarcoma Unit, which sees around
one third of those with soft tissue
sarcoma in England. Historically,
there has been less focus on sarcomas
compared to more common cancers,
including less funding available and
less known about them. Today, the
competition for funding with research
on major cancers such as breast and
prostate is still severe. Having more
funds available for sarcoma research
would definitely help us improve
our knowledge of these diseases and
ultimately help patients who develop
them.
What is your sarcoma lab’s
favourite/least favourite piece
of cancer research equipment –
what’s it called, how much was it
and what does it do?
We have one piece of equipment in our
laboratory that has the pleasure and
misfortune of being both my favourite
and least favourite instrument. It is
an automated digital microscopy
www.sarcoma.org.uk
Dr Janet Shipley;
Dr Zoe Walters
talks about the
use of laboratory
equipment
including
pipettes;
Dr Anastasia
Constantinidou
preparing
liposarcoma cells
for experiments
system that
cost several
hundred
thousand
pounds. It allows
us to automatically
capture images of cells
from hundreds of different sarcoma
samples from patients, all on a single
microscope slide. The microscope
slides have been processed to allow
us to visualise and orient genes in
individual cells, which is remarkable
Which is your most
valuable piece of research
equipment and why?
Our most valuable piece of
research equipment? – people.
People are usually the most important
component to any research project.
Having the funds available to employ
the brightest, most innovative and
able scientists is crucial to making the
advances that are going to help future
sarcoma patients.
September is coming!
Time to publicise our next ‘Call for Proposals’. This is an annual ‘event’ where all UK based
scientific researchers – that includes doctors – are invited to bid for Sarcoma UK’s research
funds. These funds are what our many generous supporters – you, basically – have raised for
Sarcoma UK’s research over the last year or so. If you have made a stand against sarcoma by
raising money for sarcoma research the ‘Call for Proposals’ is the first step in the process that
decides where your money will eventually land up.
We’re still funding what are relatively modest amounts in cancer research but we will increase
this amount as soon as we can. Simply put – we will spend more as we raise more. We’re not
quite in Cancer Research UK’s league yet but the advantage of donating money for cancer
research to us means that every research pound that comes our way is guaranteed 100% to be
spent solely on tackling sarcoma.
We’ll be announcing the ‘Call’ on the website and sending direct messages to all our scientist
contacts and medical friends to say “Here we are again, send us your best ideas”. They then have
8-10 weeks to think and construct a proposal and fill in the extensive Sarcoma UK application
form, by the November deadline. We’ll then get them peer reviewed in our annual competition,
share them with our Research Advisory Committee to assess and then make awards to the best
ones in January.
This year as we are improving our scope and services all the time, we have some new dedicated
administrative help with research. Maya Wiles, who joined the charity only a couple of months
ago, is getting stuck into her first round of running Sarcoma UK’s research processes.
Welcome Maya.
Connect
• Sarcoma UK • Summer 1 2
13
Reports
Chordoma Foundation Europe
Sarcoma UK is working collaboratively with the Chordoma Foundation to provide information and support to
chordoma patients in the UK. Our Chief Executive, Lindsey Bennister reports back
I
n June, the first round table
conference on the treatment
of chordoma in Europe took
place in Amsterdam, attended
by leading experts from across
Europe. It was organised by the
Chordoma Foundation, which has
just set up their European arm of
the organisation and followed a
chordoma patients’ meeting the
previous day. Key areas of discussion
included how to share expertise
and improve coordination between
medical specialists across Europe.
The UK was well-represented at
the conference. Adrienne Flanagan,
pathologist, University College
London, gave a presentation and
described her recent research that
identified brachyury as a clear
marker for chordoma. Adrienne
collects sarcoma tissue samples
for a biobank and is keen to receive
chordoma tissue samples from
patients.
At the conference, it was agreed that
key priorities for the future are:
Building knowledge of where the
sarcoma experts are in Europe.
Developing a consensus statement
or position paper on the care and
treatment of chordoma patients
across Europe.
•
•
• Improving
information and
•
What is
chordoma?
is part
• Chordoma
of the sarcoma family of cancers
and is a rare form of sarcoma that
occurs in the bones of the skull and
spine.
Chordomas can occur anywhere
along the spine, from the head to
the tailbone. The most common
locations are in the bone in the
middle of the head (the clivus), and
the vertebrae at the bottom of the
spine (the sacrum or coccyx).
Incidence is very small. Less than
450 people are diagnosed each
year in the UK with primary bone
sarcomas. Of these, around 28
people (6%) will have a
chordoma (NCIN Bone Sarcoma
•
•
This event, held on 20th June in Dundee, was one of a series of study
days organised by the Scottish Sarcoma Network throughout the year, for
clinicians and professionals working in the sarcoma field. The study day,
held during Sarcoma Awareness Week, was attended by over 30 people,
including clinicians and specialist nurses from sarcoma services in Aberdeen,
Dundee, Edinburgh, Glasgow, and Inverness. Representatives from Sarcoma
UK, Teenage Cancer Trust, and Maggies in Scotland also attended, providing
a patient input to the day. Presentations were given by The Teenage Cancer
Trust about their ‘Jimmyteens’ website project for teenagers affected
by cancer, and Maggie’s Edinburgh presented information about the
“Psychological impact of delays in diagnosis for sarcoma”.
More information about sarcoma services in Scotland is available at
www.ssn.scot.nhs.uk.
Connect
• Sarcoma UK • Summer 1 2
•
•
guidance to patients
in Europe.
Building a network
of chordoma experts,
with a further
meeting hopefully
taking place at the
Connective Tissue
Oncology Society
(CTOS) conference
in November 2012.
Scottish Sarcoma Network Summer 2012 Study Day
14
Incidence and Survival. Report
number R12/05 May 2012).
There are no drugs currently approved
for the treatment of chordoma.
Chordomas are generally slow
growing, but are relentless and tend
to recur after treatment.
Chordomas occurring in the head
are sometimes called brain tumours
because they grow inside the skull
towards the brain, however they
do not actually develop from brain
cells.
Metastasis (spread of the tumour
to other body parts) occurs in 2040% of patients with chordomas
of the spine, and less than 10%
of patients with skull-based
tumours. Metastasis usually only
occurs when the primary tumour
is advanced or uncontrolled and
rarely is reported at the time of
initial diagnosis.
(Information provided by the
Chordoma Foundation)
•
•
Hans Keulen,
Chordoma
Foundation
For more
information visit
the Foundation’s
website: www.
chordoma.org
National Sarcoma Study Day
for Nurses, AHPs & Senior Clinicians
Hillscourt Conference Centre
Rose Hill, Rednal, Birmingham, B45 8RS
Wednesday 24th October 2012 • 09.30 to16.00
Aim of the Day
• To bring together
health professionals
working in sarcoma
• To update knowledge
and share good practice
Guest Speakers
• Bass Hassan
• Rob Grimer
• Matt Cadby
(Picker Institute)
Topics include
• Surgery and oncology
updates
• New initiatives in
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Statistics
Leiomyosarcomas
Key facts
• Most common sites of diagnosis:
The work of the West Midlands Cancer Intelligence Unit, and their lead registry
role for bone and soft tissue sarcomas, was introduced in the Spring 2012
edition of Connect. In this edition, incidence and common sites of diagnosis for
patients with leiomyosarcoma are presented
L
eiomyosarcomas develop from
the smooth muscle cells found
all over the body. The overall
age standardised leiomyosarcoma
incidence rate fluctuates around nine
cases per million population. There
has been some variation in overall
leiomyosarcoma incidence rates
in the 25-year period 1985-2009.
Between 1992 and 2004 the overall
age standardised incidence rate rose
significantly above the incidence rate
observed in 1985. Prior to obtaining
their own ICD-O3 morphology code
in 2003, gastro-intestinal stromal
tumours (GISTs) were registered
Figure 1: Variation in age standardised
leiomyosarcoma incidence rates with sex
(England: 1985–2009. All sites)
as leiomyosarcomas. This partly
explains why incidence rates of
leiomyosarcoma have decreased from
the year 2000 onwards.
Leiomyosarcoma incidence rates are
significantly higher in females than
males, with age standardised rates
of approximately 6.6 per million in
males and 9.8 per million in females
between 2007 and 2009 (Figure 1).
Leiomyosarcomas are most
commonly diagnosed in females
aged 45 years and over, and the
number of cases diagnosed in females
Figure 2: Variation in number of
leiomyosarcoma cases with sex and age group
(England 1985-2009)
1000
16
Males
Females
12
10
8
6
700
600
500
300
200
100
2
0
0-4
5-9
10-14
15-19
20-24
25-29
30-34
35-39
40-44
45-49
50-54
55-59
60-64
65-69
70-74
75-79
80-84
85+
4
85 87 89 91 93 95 97 99 01 03 05 07 09
Year of diagnosis
Figure 3: Leiomyosarcoma age specific rates in
males and females (England: 1985 – 2009)
Age group
Figure 4: Proportion of leiomyosarcomas
diagnosed at each anatomical site in each age
group for males and females
100
90
50
Males
Percentage (%)
45
80
Females
40
35
30
25
20
70
60
50
40
30
20
15
10
10
www.sarcoma.org.uk
80+
80+
70-79
70-79
60-69
50-59
60-69
50-59
40-49
30-39
40-49
30-39
0-29
0-4
5-9
10-14
15-19
20-24
25-29
30-34
35-39
40-44
45-49
50-54
55-59
60-64
65-69
70-74
75-79
80-84
85+
Age group
0-29
0
5
0
is higher than in males for all age
groups (Figure 2). Leiomyosarcoma
age specific rates are also higher in
females than in males under the age
of 65 years, while this trend reverses
in more elderly patients (Figure
3). This is primarily due to females
having a higher life expectancy, and
the comparatively smaller number
of males inflating the male age
specific rate in the older age groups.
Leiomyosarcoma diagnoses are
exceptionally rare in patients younger
than twenty years of age.
400
0
Age specific rate
(per million)
Females
800
Number of cases
Age standardised rate
(per 1,000,000 persons)
Males
900
14
limbs, retroperitoneum,
gastro-intestinal tract, female
genital tract
• 12,199 leiomyosarcomas
diagnosed in England 1985-2009
• Age standardised incidence rate:
9 per million persons
• Number diagnosed in 2008 and
2009; 554 and 470
• Sub-types:
– Leiomyosarcoma NOS (M8890,
11,764 diagnosed 1985-2009)
– Epithelioid leiomyosarcoma
(M8891, 279 diagnosed 19852009)
– Myxoid leiomyosarcoma
(M8896, 128 diagnosed 19852009)
– Smooth muscle tumour
(M8897, 28 diagnosed 19852009)
Leiomyosarcomas most commonly
arise in the female genital organs
(40% of female diagnoses) and
in the limbs (16%). However,
leiomyosarcomas can be diagnosed
anywhere in the body, including
in the connective tissues of the
trunk (13%), the GI tract (14%)
and the retroperitoneum (6%).
Incidence rates in each anatomical
site of diagnosis vary according
to age; leiomyosarcomas of the
gynaecological organs are most
common in females aged 40
to 59 years, and limb and trunk
leiomyosarcomas are most common
in patients aged less than 30 years
(Figure 4).
F M F M F M F M F M F M F M
Age group: male and female
Other sites
Male genetalia
Gynaecological organs
Skin
Organs within trunk
GI tract
Connective tissue of trunk
Retroperitoneum
Head, face and neck
Limbs
Five year survival rates for under 60s
have improved by 18% in the last 25
years but there is still much work to
be done.
Connect
• Sarcoma UK • Summer 1 2
15
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