Ovarian Cancer Symptoms Awareness Harm or Help?
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Summer 2008
Ovarian Cancer Symptoms Awareness
Harm or Help?
Professor Mike Richards, National Clinical Director for Cancer, chaired the recent
Ovacome / Eve Appeal conference which presented current evidence on ovarian
cancer signs and symptoms. For a full report see pages 4 and 5.
ovacome is a nationwide support group for all those affected by ovarian cancer,
involving sufferers, friends, families, carers and health professionalsFrom the chair From the editor
It was great to see so many of you on Members' Day, an So much has happened since the last newsletter that it
exciting event with so much going on. There were is hard to fit it all in.
interesting speakers in the morning covering different areas
from what is new in ovarian cancer, to cancer genetics and It never ceases to amaze me how much is achieved by
finally managing the side effects of cancer. Following a the staff here. The office move, Members’ Day, the
good lunch with plenty of time for chat and to draw on the Signs and Symptoms Awareness conference – all are
graffiti wall, there was an array of complementary therapies such major events that they would stretch any
in the afternoon. So much to choose from, relaxation, organisation, let alone one run by five part-time staff.
hypnotherapy, nutrition, Look Good, Feel Better, Health and Their dedication and tenacity has resulted in several
Well Being and art therapy. I saw lots of beaming smiles ‘re-thinks’ by NICE in the treatment of ovarian cancer
and various paintings and pottery and the make up looked patients, the latest coup being with Epo, as reported on
great, knew I should have volunteered for that. page 3. We are lucky to have such a great team
working on our behalf. As a cancer patient, I consider
We have moved offices and this was just before Members' myself amongst the beneficiaries of their work.
Day – not great timing, but that's life. I therefore want to
say a special thanks to all the staff for making both events Don’t forget to bag yourselves a bargain with our
happen and run so smoothly. discounted Christmas cards, and look us up on
Facebook, the social networking site (just search for the
I would like to say a big thank you also to Jayne Pyper for Ovacome page) where we have nearly 500 fans so far!
all her hard work as editor of the newsletter and co-
ordinating the marathons, she is taking a well earned rest Susan
and enjoying the summer with her family. Welcome and
thank you to our committee member Susan Dunning for
stepping into the breach and editing this copy. Ovacome Information
The members committee is very important to Ovacome as it
is our way of keeping in touch with what is happening at Manager
ground level. Peter and Ann Butler have been stalwarts of
the committee and have travelled a long way for the bi-
monthly meetings. They have hung up their travelling cases One day per week in the
so it is also a thank you to them both for their support and Ovacome Office,
commitment over the years. Peter currently continues to
support Ovacome as a Trustee. London W1
So we need your help. Do you know anyone who would be Salary £12.93 per hour
interested in becoming a member of staff, committee
member, Trustee or volunteer for Ovacome? Please contact
me via email noelineovacome@btinternet.com or phone the Are you good with words? Can you work well
office for further details on Tel. 020 7299 6654 and ask to independently and in a team?
speak to Louise or Jack.
Ovacome is recruiting an information manager
Have a great summer, to be responsible for all information output from
Noeline the charity: newsletter, factsheet production,
and web content.
Relevant experience desirable, but not
Ovacome Staff essential.
You will have computer skills and an eye for
Louise Bayne, CEO, Three days a week
detail, and be able to work to a deadline.
Jacquelyn Arnold, Office Manager
Monday to Friday. 10.00 a.m. to 3.00 p.m. Whilst mainly office based, some home working
Ruth Payne, Support line/Administrator
a possibility.
Wednesday, Thursday and Friday For further information, please contact
Teresa Cramer, Support line/Administrator Jack on 020 7299 6654
Monday and Tuesday
Ruth Grigg, ROCC Manager
Susan Dunning, Temporary Newsletter Editor
Office Hours: Monday to Friday 9.00 a.m. to 4.00 p.m. This newsletter is produced in
Telephone Support line 0845 371 0554 memory of Sarah Dickinson,
Admin line 020 7299 6654
founder of Ovacome
2Epo gets the OK from NICE
After a long, hard-fought battle, and ruling by NICE, women whose guidance will be fully implemented by
following our final appeal against NICE, haemoglobin levels have dropped can the end of August.
we are delighted to report that they start having treatment with Epo.
Unfortunately ovarian cancer was the
have finally approved the use of
There are three different types of Epo only tumour type to gain NICE approval
Erythropoietin in ovarian cancer.
available on the UK market. They each for using Epo and we feel saddened
The chemotherapies commonly used to have different treatment schedules and that colleagues in other cancer charities
treat ovarian cancer can have a work in slightly different ways. All are such as Myeloma UK and Leukaemia
profound affect on the bone marrow. administered by a small injection, some Care, whom we have worked with over
This is where red and white blood cells weekly, with others at different intervals. the past four years, have not had the
are produced. Low levels of white Women do not need to go to hospital same success.
cells, called neutropenia, leave people for the treatment, but can either do the
We would like to thank colleagues and
vulnerable to infection. A low level of injection themselves or go to their local
members who have supported our
red blood cells causes anaemia and it practice nurse.
representations to NICE, and in
is this that can cause significant fatigue
So who is eligible? particular Hannah Young, Ovacome
and exhaustion.
member, who represented us as an
If you are on chemotherapy for ovarian
Erythropoietin, more commonly known expert witness.
cancer and your haemoglobin level has
as Epo, is a drug that stimulates the
dropped to 8, you will be entitled to For more information on the guidance,
increase of red blood cell production,
start treatment with Epo as soon as please call our helpline on 0845 371
thus relieving the anaemia. Up until
your PCT (Primary Care Trust) has 0554 or see the NICE guide for patients
now women having chemotherapy have
ratified the guidance. Trusts have up to at http://www.nice.org.uk/ guidance/
had to have blood transfusions to
three months to do this, so the index.jsp?action=download&o=40700.
manage their anaemia. Following the
MEMBERS’ DAY APRIL 2008
Very therapeutic and enjoyable
It may have been the idyllic setting of Clinical nurse specialist Tracie Miles, Christine Neillands, Health and
Regent’s Canal, or the informative and from The Royal United Hospital, Bath, Wellbeing with Beverly Hamilton were
stimulating speakers, that made spoke about her role. She explained just some of the options available.
Members Day so memorable. about the support levels available in Others participated in the talks from Liz
Returning to the NCVO enabled us to many hospitals for people with cancer. Butler of the Penny Brohn Cancer
see many old friends and welcome new She expanded in depth on the role of Centre in Bristol and from Chrissy
ones, without the normal hustle and the multi-disciplinary team and the Tilbury from Look Good Feel Better. On
bustle of a hotel or conference centre. flexibility that the service has in the the latter a big thanks you to our two
The room was a buzz of conversation provision of individualised care. volunteer models Mona Tobin and
and anticipation as members got to Valerie Grose. Both looked very
Each speaker generated so many
know each other over coffee before the glamorous.
interesting and pertinent questions and
morning got under way. We were not
it was inevitable that the morning We have to thank all the speakers and
disappointed.
overran. We are forwarding on any workshop leaders who gave up their
After a welcome from Noeline Young unanswered questions to the relevant time on a Saturday and supported us.
(Chair of Ovacome), Professor expert. A massive thank you to the team at
Jonathan Ledermann opened the Ovacome, who work so hard to make
After the break for lunch the group
programme with a presentation Members’ events not only a success,
separated out into different workshops.
outlining current and future clinical but therapeutic and enjoyable.
Relaxation with Julia Dunn, Art therapy
trials. He explained the differing
with Michele Wood, Hypnotherapy with
approaches now being taken in anti
cancer treatments currently under
investigation. Though these theories Ovacome Calendar 2009
are quite complex and technical, Following our appeal, we have had a great response from readers willing to
Professor Ledermann explained them participate, from as far afield as Newcastle and Plymouth.
in an easy to understand way, which
was more enlightening than mystifying. To date we have photographed five people (or groups of people) affected by
ovarian cancer, and we have had offers of advice and valuable ideas on printing
Dr James Mackay followed with a talk and distribution. In addition our patron, Jenny Agutter, has agreed to her picture
on the role of genetics in cancer, often on the cover, which will help sales no end!
a very scary subject. Dr. Mackay
shared information on a new study Although we now have enough models, we still welcome offers from readers who
looking at using genetics to specify are willing to help this calendar raise the profile of Ovacome and provide much-
which treatments to use in the fight needed funds for our work. So if you have any thoughts, advice or practical help,
against cancer. He also spoke about a particularly in print or distribution, please contact me through the office.
new cancer risk assessment called Geraldine
OPERA.
3OVARIAN CANCER SYMPTOMS AWARENESS
Harm or Help?
Following presentations on the
This Conference, organised by The Eve Appeal in
evidence available, speakers from key
partnership with Ovacome, was held on 8th April 2008 and organisations were invited to speak,
brought together a wide range of experts to debate how best to and give their perspectives. Louise
present consistent advice to women on the signs and Bayne spoke on behalf of Ovacome,
symptoms of ovarian cancer with the aim of producing a UK highlighting the great distress caused
Consensus Statement on the issue. by late diagnosis. Using evidence
from our 2006 survey of nearly 400
There is already a consensus UK. Professor Lesley Fallowfield, members, she gave examples:
statement in the USA, which the from University of Sussex, presented
● Of 387 surveys analysed, women
American Cancer Society, the on the psychological impact of
waited an average of 5.6 weeks
Gynaecological Cancer Foundation awareness raising and Mr Sean
till seeking help
and the Society of Gynaecological Kehoe from Oxford Radcliffe
Oncologists signed up to in 2007, concluded with a review of existing ● Results demonstrate a clinical
which sets out agreement on literature on ovarian cancer signs and delay of 11.52 weeks. It took an
symptoms commonly associated with symptoms. average of 3.21 clinical
ovarian cancer. appointments to achieve a correct
In summarising the evidence,
referral.
In the UK, although there is general Professor Richards highlighted key
agreement that women with ovarian aspects: that awareness and ● In 171 cases the GP's referral
cancer may experience a common understanding of risk for ovarian pattern and conversations with
set of symptoms, UK experts – cancer is very low in the UK; that the patient showed a clear index
including charities as well as studies show that symptoms could be of suspicion that an ovarian
researchers and oncologists – have frequent, although were not abnormality was present. In 94
yet to formally agree on signs and experienced by everyone, and that cases the GP did not illustrate
symptoms of the disease and how to there is a broad level of agreement of any suspicion of ovarian cancer.
communicate this to women and what those symptoms are. He also
health professionals. raised the question of how symptoms Whilst acknowledging that women
could be used to identify women at understood that ovarian cancer is
The Consensus conference was rarely seen by GPs (once every five
higher risk of ovarian cancer and
chaired by the National Clinical years) it is none the less frustrating
spoke encouragingly of further
Director for Cancer, Professor Mike when women feel that they could
research in the area of ovarian
Richards, who opened proceedings have been diagnosed sooner.
cancer symptoms.
and introduced four speakers
Louise pointed out that whilst there
are many advantages to raising
awareness of the signs and
symptoms of the disease, there are
pitfalls too. On the plus side, signs
and symptoms awareness would
ensure optimal diagnosis times, raise
the profile of the disease, maintain
good relationships between GPs and
patients, and potentially improve
survival; on the other hand It could
Representatives around the table give their perspectives on the issues cause significant problems, provoking
surrounding ovarian cancer signs and symptoms anxiety and having a negative impact
on NHS resource, leading to delays in
presenting current evidence on The second part of the conference diagnosis for those who actually do
ovarian cancer signs and symptoms. programme saw key groups present have the disease.
their perspective on the issue of Louise concluded by saying that :
USA speaker Dr Robyn Andersen
ovarian cancer symptoms awareness,
presented the results of a case- ● Raising awareness should be
with those representing patients,
control study in the USA, while Dr based on sound clinical evidence
ovarian cancer charities, screening
Usha Menon, from the
trials, gynaecological oncologists, ● Raising awareness activity should
Gynaecological Cancer Research
primary health providers, radiologists
Centre at UCL spoke about research occur within programmes which
and the public health perspective all
projects currently under way in the include NHS infrastructure and
contributing to the discussion.
education of NHS staff
4● Primary care should be the Radiologists, UK)
primary target, symptoms STOP PRESS STOP
● The Public Health Perspective, PRESS STOP PRESS
awareness in particular.
Professor Peter Sasieni (Cancer
● Significant research is needed to Research UK)
plug knowledge gaps (stage shift,
overall survival, impact on worried
The audience of 80, which included
National
Ovacome members, was invited to
well)
debate the evidence and perspectives awareness &
Presentations from other charities raised. Several members raised
and professional bodies followed: questions and shared experiences,
which were well received.
early detection
● The Ovarian Cancer Action
Perspective, Philippa Carr
(Ovarian Cancer Action)
Following well earned refreshments,
the Consensus Group, which included
initiative
speakers and members of other
● The Wellbeing of Women As part of the Department of
bodies such as the National Forum of
Perspective, Gemma Hobson Health Cancer reform strategy,
Gynae Oncology Nurses, reconvened
(Wellbeing of Women) Ovacome has been working with
for a closed meeting to debate the
the Department on National
● The Screening Perspective, issues raised and to formulate draft
awareness initiative. The aim of
Professor Ian Jacobs (University consensus documents. These drafts
the initiative is to identify key
College London and Institute for are now being circulated to health
messages to promote earlier
Women's Health) professionals and bodies for
consultation and agreement. It is detection of cancers. They have
● The British Gynaecological hoped that a final consensus already undertaken work in other
Cancer Society Perspective, statement on signs and symptoms of cancers such as Lung, Breast,
Professor David Luesley (Pan- ovarian cancer will be ready for Prostate and Bowel.
Birmingham Gynaecological launch by autumn 2008.
Cancer Centre) Ovacome, along with other
A copy of the draft will be available charities and key stakeholders,
● The Primary Care Perspective, Dr on the Ovacome website for comment met with the DoH, and was
Sarah Jarvis (Royal College of in the near future. delighted that they plan to adopt
General Practitioners) the key messages agreed at the
recent Eve Appeal/Ovacome
● The Radiology Perspective, Dr Jo
consensus conference. Mike
McHugo (Royal College of
Richards, National Lead for
Cancer, felt that the work we had
undertaken was unmatched in the
UK. This is a fantastic
endorsement of the process, and
the collaboration of all involved.
Whilst the consensus agreement
is still a work in progress, some
key outcomes have already been
agreed. Having identified that
lack of knowledge about some
fundamental issues was a real
barrier to earlier diagnosis,
research in the area is a critically
important next step. We have
been charged with organising a
research interest group which will
continue the work of the
consensus meeting in considering,
prioritising and recommending
As part of the run-up to the consensus meeting, studies which need to be
Louise Bayne, our CEO was invited to be the first undertaken in order to make
author of The Times on line debate. earlier diagnosis of ovarian
cancer a possibility for the future:
You can join the discussion by going to: a challenge the Ovacome team
http://www.timesonline.co.uk/tol/life_and_style/ will grasp with relish.
health/expert_advice/article3745158.ece
5Onward and upward (and just along the road)
Ovacome and the Eve Appeal which would not previously been
(the gynaecological cancer possible. Louise and Alex, in Our new
research charity) share many key particular, are enjoying the
objectives and ideals. During the benefits of an 8-foot commute to contact details
past year we have undertaken meetings. The members Ovacome, PO Box 6294,
several joint projects, such as the committee have already enjoyed London W1A 7WJ
TEA parties, and April's their first meeting in the offices.
Support line 0845 371 0554
consensus conference (see
Thanks in particular to Jack, Ruth Admin line 020 7299 6654
pages 4 and 5). During one of
and Teresa for all the hard work
the planning meetings we were e-mail ovacome@ovacome.org
that went in to planning and
each bemoaning our respective www.ovacome.org
executing a smooth transition, as
lack of space. It was only a few
well as to David Frew for his skills
weeks later that the suggestion of
with a screwdriver.
co-locating to new offices was
first suggested. We thought
carefully about this, and following
some detailed planning decided
to start 'living together'.
Whilst it was a wrench to leave
the Elizabeth Garret Anderson
Hospital behind, we are enjoying
settling into our new space (and
the air conditioning and windows
are a particular favourite of the
team).
Although we are still unpacking
boxes, our new space is fantastic.
We are already seeing the
advantages of co-location too,
and have plans for further shared
Jack and Ruth make the most of extra space in their airy new office
projects with The Eve Appeal
Please welcome a new New merchandise
member of the team Ovacome now has car stickers for sale! They
measure 25mm by 70mm and have the Ovacome
We are delighted to announce that on the 7th July a logo and contact details printed in teal on a white
new member of the office team will be joining us. background. They are made of self-cling vinyl so can
Ruth Grigg will be taking the post of Regional be used again and again and won't leave a sticky
Ovarian Cancer Coordinator (ROCC) manager. residue on your window or windscreen. Perfect for
showing that you support the work of Ovacome,
Our local volunteers are a valuable and important spreading the word about us or for fundraising.
part of the charity, ensuring that members can
support our work at a local level. ROCCS are The stickers cost £1 each or for fundraising bulk
people who have experienced ovarian cancer, either orders please contact the Ovacome office on 020
themselves or in a loved one and who spend a few 7299 6654.
hours a month on local Ovacome activities. Coming soon ... enamel ribbon pin badges and
We are delighted that following collaboration with notelets in a variety of designs!
The Eve appeal and funding from Boots, Ruth will
be able to provide dedicated support, training and
advice to our volunteers. She can be contacted by
ringing our admin line on 020 7299 6654. If you are
interested in learning more about the ROCCS 0845 371 0554 www.
ovacome.org.uk
programme, please do get in touch.
6EUROPEAN CANCER PATIENT COALITION CANCER PATIENT SUMMIT, BRUSSELS, APRIL 2008
Making Cancer a Priority
I had not long been on the Ovacome choice. Delegates could
committee when the ECPC was activate a microphone
launched and committee members which also showed the
were asked to read the aims of the delegate on all screens. As
coalition and decide if Ovacome usual the hospitality was
should become a member. The first class and a reception
committee voted unanimously to on the first evening of the
support the ECPC. I have frequently conference gave an
visited their website since that time opportunity to meet an
and kept in touch with their activities. impressive array of
delegates from many EU
I went to ECPC conferences in Europe
countries. Members from
as a member of the Hereford Cancer
the new states were there in
User Group, first in Milan and I later,
force and exhibited great Sandra pictured with Lynn Foulds Wood,
with an ECPC bursary, in Ljublijana. I
enthusiasm for establishing Chair of ECPC
have always been committed to
best practice in their own (photo courtesy of Phillipe Veldman)
equality of access to cancer treatment
countries.
and clinical trials across the European As well as listening to the inspiring
Union and the entry of many Eastern The chair of the ECPC Lynn Faulds presentations given by speakers from
European states has presented Wood was present with her usual many European Union, states there
significant challenges. Many have no enthusiasm and astonishing ability to was plenty of opportunity to network
cancer plans and not all even register remember everyone's name and and meet with patients from many
cancer incidence. affiliations. There was an impressive states and tumour groups. As usual
array of speakers and one of the there were no representatives from
It was good to have the opportunity to
highlights was an address by other gynaecological cancer groups
attend the Brussels conference
Androulah Vassiliou, EU Health but strong representation from breast,
wearing the Ovacome badge, thanks
Commissioner. She was a very lung and prostate bodies.
to an ECPC bursary which would
passionate speaker on the subject of
cover my expenses up to £500. I always find ECPC conferences both
cancer and impressed all with her
I flew to Brussels from Birmingham commitment to the continued struggle informative, inspiring and supportive. I
on April 6th and stayed at the Sofitel to obtain equity of access to cancer take away from the meetings new
Hotel which was situated in a lively services across all member states. ideas for raising the profile of patient
square with a visiting fair and just a Other speakers concentrated on involvement and many memories of
short walk across a park to the improving outcomes for cancer meeting with patients who each have
conference centre. The conference patients, cancer research and entry their own story to tell. I fully endorse
centre itself boasted state of the art to clinical trials. There was a very the ECPC mantra that cancer
communications and technology. practical session for patients on patients should be there in the middle
Each delegate had an individual campaigning for improved patient of all decision making.
console through which one could involvement in cancer services in Sandra Woodward
access the translation language of their respective countries.
Ovacome with style
Together with accompanist Chris Wiltshire,
professional soprano Jayne May-Sysum
(pictured) recently gave a concert in aid of
Ovacome to a capacity audience at The
Royal Pump Rooms, Royal Leamington
Spa. The concert was dedicated to the
memory of Margaret Halfacree, Jayne's
aunty. The family lost Margaret to cancer a
couple of years ago.
The beautifully elegant Assembly Room in
The Royal Pump Rooms was full and the performance and the genuine warmth she
audience enjoyed a varied programme of shows towards her audiences is
musical show numbers, opera and song. There was unmistakable. As a consequence, people feel
something for everyone, as the standing ovation at the she is singing just to and for them.
end of the evening proved. Jayne's delight in The concert raised £1,105 for Ovacome.
7Teresa's day at the marathon
At Ovacome we do our best to support all our members and our later Angie discovered she'd lost her
fundraisers, by trying to attend as many events as possible. Sadly we tickets (her boyfriend's season ticket),
were very thin on the ground for the London Marathon, but Teresa her bank card and £10, all in a flimsy
Cramer, who normally works on our Support Line, saved the day and Oyster wallet. Two very nice young
gave up her Sunday to cheer on the many brave runners fundraising on men overheard our conversation and
our behalf. Here is her rather eventful account. said they'd seen the ticket wallet on
ground at Canary Wharf. We
annoying members of the public went returned, searched platform and flat
I went with my lovely friend, Angie,
on the road in front of us – there was surfaces in the hope that someone
who should really be thanking me as
only a red and white ribbon next to may have picked it up and left it there.
she’s decided that she'd like to join a
our barrier, where the samba band Alas, nothing. I said "Let's ask that
samba band and run the next
originally were. In less than 10 station man yonder" and Angie did.
marathon simultaneously. Her parents
minutes they completely obliterated He asked her name, produced said
are fantastic athletes by all accounts,
us. I merrily yelled enthusiastically to lost item, all intact, from his back
so come on Angie! (Her dad ran a
the runners (any and all), even more pocket! Angie was overjoyed, and
100k marathon in 26 hours!)
so, when some man was on his her faith in London/UK is
We started on Blackheath, queuing mobile, pushing against me to try and overwhelming, as she said how
for coffee 20 minutes before the elite get past. I stoically held my place. honest people are here and that that
ladies' start, basking in the sunshine. Angie had crept to would not have
We got lost trying to find the start the kerb happened in South
point, found the blue zeppelin cautiously and Africa. Hence she
balloon, but not the exact start, by spotted the South knows the flag.
which time the race had started. African flag and
She left me at
We then went to Canary Wharf as Gordon Ramsey. I
London Bridge and I
arranged and set up beside the band have to say, she
carried on to
like Jayne had done in previous years. wasn't too focused
Westminster. The
Thanks to Angie for blowing up so on spotting the
rain was again
many Ovacome balloons: with lungs Ovacome runners
threatening. I saw
like that she should really join a brass as her heart was
many runners going
band. I secured the balloons to two set upon spotting
past and asked a
plastic fly swats, tied them to a barrier Jonathan Ross.
police lady the way
and bravely stood behind them hoping We didn't see him
to the park, got there
to be noticed. Angie swayed to the either. She was
and thought instead
very loud London School of Samba very good at
of going to the
band who were fantastic. They had a spotting the
grandstand I'd hang
very beautiful and exceptionally unusual. I
around the Meet &
energetic dancer showing her midriff. It cheered on the
Greet tree just in
was pretty cold and I expect she’s Pink Panther, and
case. As it was then
curled up in bed with a kidney infection the chap clothed
nearly two o clock, I
by now. Angie sportingly wore the in ivy and the
reckoned a few
Ovacome tee-shirt over her jacket (she nearly naked man.
Ovarunners might have
is very petite and beautiful – a bit like Watching on TV later we found that
finished and perhaps had decided to
Bo Derek from 10, if anyone can the former two were celebs and the
meet/greet with their families and
remember that far back). Mine was my latter just rather nice. So, after
friends elsewhere. The heavens
sole source of upper clothing under my feeling thoroughly wet I had bought a
opened and at 2.35 I strolled to
jacket, but I also wore the cap. cheap £1.99 turquoise and white
Victoria station, managing to get
brolly as I don't have an Ovacome
So we were set up (without the some good shots from the temporary
brolly or golf brolly, which would have
banner – it's somewhere in one of pedestrian bridge to get there. There
been brilliant for the Ovacome
our two premises) (sounds rather may be an Ovacome runner in there.
runners to see us, we left at 12.50 to
grand that two premises, but we were The joys of supporting!
move on.
in the middle of a move). Then it Despite our various mini adventures,
rained and rained and rained. The It was then that Angie's day could
and the big disappointment of not
band stopped playing for about 20 have gone wrong, but it was
seeing our Ovarunners, we did have
minutes and moved themselves (very remarkably salvaged -sadly nothing
a good time. I was very pleased with
sensibly) under cover. My ears were to do with Jonathan Woss. We had
myself as my pedometer said I'd
overjoyed, sadly Angie was decided to use our Grandstand
walked 11.3 km.
disappointed. Passes and go to St James Park and
hopefully see an Ovacome runner or Huge thank-you to Angie for joining
All was going great, apart from the two. We boarded the tube about 1pm me and to all the marathon runners,
weather, until about 12.30 and at Canary Wharf and two stations running for Ovacome.
8The effects of writing Ten things I’d like to
about significant events tell my oncologist
on well-being 1 However bleak things are, please give me
some hope, otherwise I will find it difficult to
Between May 2006 and September 2007, cope with the treatment I am having.
Ovacome members were enrolled into a trial 2 I am an individual – despite all the research,
assessing the effectiveness of writing about
there may be very specific reasons why I
significant events on improving well-being. The trial
decide to go down a particular treatment
was run by Yori Gidron and Emily Arden-Close at
the University of Southampton. The results are route.
reported below. 3 I am frightened – a lot hangs on this
appointment. I may be one of a hundred
One hundred and two members of Ovacome and their patients you see today, but the thought of
partners participated in the trial. There were two this appointment has kept me awake for
conditions. In the intervention, participants wrote about nights on end.
the woman's diagnosis and treatment of ovarian cancer
according to given instructions. In the control (placebo) 4 It's nothing personal but sometimes I find it
condition, participants wrote about what the woman did difficult trusting the medical profession. It
the previous day. Participants did the writing for 15 took six visits to my GP before I was found
minutes a day over three days. to have advanced ovarian cancer.
Questionnaires were completed before, three months after 5 I know there may not be any proof that
and six months after writing. There was no overall effect certain diets or complementary treatments
of writing about the patient's diagnosis and treatment of
work but I want to try and help myself in any
ovarian cancer. However, it was beneficial for some of the
participants. way possible. It might not cure the cancer
but it does make me feel better and give me
• Quality of life improved for members who said they back a bit of control.
would recommend the intervention (approximately 70%
of the participants). 6 Please take notice if I feel something isn't
quite right, I've got to know my body very
• Quality of life improved for members who reported an
improvement in communication with their partners well and am quite in tune with any changes
about the illness. that might be happening.
• Distressing thoughts about the illness were no longer 7 I'm not the only one affected by my illness so
associated with emotional distress in general (although please don't feel threatened if I want
they were before people wrote). someone to sit with me at my appointments
• Distressing thoughts that partners had about the and ask questions. I need their support and
illness were no longer related to members' quality of sometimes they are able to remember things
life (although they were before people wrote). about my health that I don't and they are
another pair of ears to hear what you tell
People also improved depending on how they wrote.
Members who used more positive emotion words such as me.
fortunate, thankful, etc. when writing about how they feel 8 It is difficult for me to make a split-second
now experienced less distress three months later and also decision about what treatment option I
reported improvements in their communication with their decide to have. I might need to go away,
partners about their illness. As expected, all participants
think about it and ask others before deciding
used some negative emotion words, such as angry,
shocked, but those who used more positive emotion words
what to do when so much depends on it.
as well as the negative emotion words improved more. 9 If I ask for a second opinion or see
The intervention did not seem to be helpful for partners. something on the internet, don't feel insulted
I need to know I have explored all the
Overall, it appears that writing about the diagnosis and
possibilities as I may only have one chance
treatment of ovarian cancer has a positive effect on well-
being in some individuals. However, further research is at dealing with this disease.
needed to understand who may benefit, and the most 10 Thank you for looking after me. I really
effective instructions to provide. appreciate all that you have done for me.
The team at the University of Southampton would like to ANON
thank everyone who participated in this study. If you have
any questions we are happy to answer them.
9Gynae Patient Support in Dudley
The Gynae Cancer Patient The second event
Support Group based at organised on March 26th
The White House in by Ailine Madders Support
Dudley held two events to Group Coordinator at
mark Ovarian Cancer Cancer Support, The
Awareness Month in White House Dudley,
March. The first event on attracted about forty
March 18th was an patients, relatives and
information stall in the health care staff. It was a
foyer of Russells Hall meeting to hear about
Hospital, Dudley. It Advances in Ovarian
displayed posters and Cancer Treatment and for
balloons and we gave patients to share their
information away about experiences. It was an
the signs and symptoms enjoyable and informative
of ovarian cancer. We also afternoon. A raffle was
sold pin badges and raised held to raise fund for The
£90 for Ovacome. White House which is building used entirely to provide
facilities for cancer patients and their carers. It offers
This display was manned by members of the group and
support, practical help and information. The Dudley
Sara Hiam Macmillan Gynae Oncology Clinical Nurse
Gynae Cancer Patient Support Group meets there on the
Specialist based at the hospital. It was a well attended
fourth Wednesday of each month at 2 pm. New members
event with a constant flow of visitors including patients
are welcome, further details about the group are available
and staff as well as the general public.
via the Ovacome office.
Oh, knickers! Odyssey
Odyssey is a charity which enhances the
quality of life for people with cancer
through imaginative programmes of
challenging and dramatic activities using
the outdoors.
The charity was started in 1984 by an
oncologist, runs outdoor challenges for
people of all ages from 18-84 to help
them deal with the emotional and
psychological challenges that can be
caused by the disease. The purpose of
the courses is to enable cancer patients
rebuild their confidence, regain a zest for
life and a sense of control over the next
stage of their lives. It is available for
anyone over 18.
The courses last for five days and runs
Picture courtesy of the Hereford Times
eight times a year at various locations
around the UK including Scotland, Kent
Members from the Herefordshire Gynae Cancer Support Group did their and the West Midlands. The courses are
bit towards raising publicity for ovarian cancer awareness month by free and get booked up quite quickly but
decorating and personalising panties and inviting the Hereford Times there are often standby places available.
photographer to come along tomake a permanent record of their art work. In general you need to be able to climb
stairs and walk about a mile.
The speaker at the meeting, Dr. Ray Owen, who was addressing the group
on ‘Being positive in the face of uncertainty’, claimed to find the line of Their website covers almost every
displayed panties a distraction while he was giving his talk! question you could have about the
challenge and whether it is right for you. It
If any Ovacome members would like to go to the group's meetings on the is well worth a look. If you go on a course
first Thursday in each month at Belmont Golf Club, Hereford, please please tell us about your experience.
contact the Ovacome office for details.
www.odyssey.org.uk
10ADIDAS WOMEN'S CHALLENGE
Susan and Ellie run with the stars
The 2008 Adidas Women's 5K Challenge (formerly the Hydroactive centre London to have her
5k) is a fun run for women of all ages taking place in London, chemotherapy and during the
Birmingham and Liverpool on 7th September. It’s a fun, informal event, holidays I would go into town and visit
and you can run or walk, or just cheer people along in the late summer her and then go to the zoo or
sunshine. Every year Ovacome supporters and office staff run the event Hamleys with my dad and grandma.
to raise money and spread the word about Ovacome and this year we're We would go to the chemo suite and
absolutely thrilled to have our patron, Jenny Agutter, running for Team pick mummy up and all go home. I
Ovacome in London! Susan Dunning, our newsletter editor, and her got sad again when she had to have
daughter Ellie are also taking part. You an sponsor them at the next operation. We visited her
www.justgiving.com/elliedunning or www.justgiving.com/susandunning. every morning so we could watch
And to find out how to join them see page 14. Tweenies together, she would do my
hair and then I would get the tube
My name is Ellie, I am 11 years old too. The next day we went to see her with daddy and go to nursery. That
and I’m going to take part in the and she looked so much better. She was in 2000 and I am happy to say
Adidas Women's 5k Challenge. I don't told me that they had taken out what mum is much better now. I feel sad
know if I can run that far, but I had made her so ill. It was the size of that she is always in so much pain
promise everyone who sponsors me a melon and she weighed 12 lb and glad she has new medication to
that I’ll walk as fast as I can. lighter. She couldn't move but was a help. All the surgery and chemo left
lot happier. Then I got sad again her with fibromyalgia (I had to look up
I know I’m not a woman yet, but want the spelling). With her new tablets
when I realised mummy wasn't
to do this to support my mum and she is much more like the old mum I
coming home that night, or the one
raise money for Ovacome, so they remember. I am happy she survived.
after that or the one after that too. I
can help other families, whose mums My mum's doctor ignored all her
remember walking back to the car
have cancer of the ovaries. My mum signs and symptoms, Ovacome works
and she waved at us through the
found out she had cancer when I was hard to make sure GPs are aware of
window. It's etched on my memory, I
three and I remember it so well. the signs and symptoms and, as
would have given anything to have
Everyone thinks three-year-olds don't mum keeps telling me, we have to
been able to stay with her, and I
understand: well, they are wrong, I help Ovacome help other families. I
remember thinking if I was very good
did! I can remember going to the hope you sponsor me.
and quiet I could just stay and sleep
hospital with mum because she was
on a corner of her bed.
so ill and having to leave her in Susan adds:
accident and emergency, because we After about three days my grandma
had to go home and eat. came and stayed with us which made I was diagnosed with ovarian cancer
me happier. Mummy came out of in 2000 and happy to be here to tell
I go to hospital a lot because my the tale. Being Ellie’s mum means I
hospital and I was glad. A few days
body reacts funny to food and I go can't get out of this one! I hope we
later mummy found out she had
into anaphylactic shock, so it is will raise lots of money for Ovacome.
cancer. She told me that she had
difficult to find food safe for me to eat. Like many ovarian cancer patients,
some wonky cells in her and she was
I remember later that night, the phone despite obvious symptoms, I was
going to have some medicine that
rang and it was my mum. I was misdiagnosed for many years by my
would make her hair fall out, but I
asleep on my dad's knee with my hat GP, until I was taken into hospital for
wasn't to worry because it would
and coat on waiting for her to call us an emergency appendectomy. I want
make her feel better and her hair
to pick her up. It was after 11pm and to support Ovacome’s work in re-
would grow again. My mum has
she told us that she was going to educating GPs to the signs and
lovely hair. She would travel into the
have an operation that night. I symptoms of ovarian cancer. Co-
cried and I think my dad did hosting the Consensus Conference
Ovacome and funding research
makes the goal of early detection
that much closer. As a committee
member I know just how hard
everyone works on our behalf and
how important their work is. I am
also hoping to rope Steve my
husband in and try to get some
match funding from the company he
works for, so watch this space and
website. If you can't sponsor me
make sure you sponsor Ellie!
Left, Ellie with Ovacome’s patron Jenny Agutter. Right, Team Ovacome
2007 raised over £2000 in the Adidas 5k Challenge
11from our postbag
Pam's not-so-merry decided that I should have some tests
to try to find out what was going on. I
throughout the treatment and my hair
thinned out a bit; fortunately these
Christmas, but very had many tests over a period of three
months, but continued to feel totally
were the only side effects.
Towards the end of the treatment my
happy new year exhausted and lost a great deal of
consultant said my CA125 blood test
Two weeks before Christmas in 1988 weight as I hadn't eaten properly for
was showing a dramatic drop in the
I had stomach pains that the GP three months. On one of my many
number of bad cells; he thought I was
thought were cramp associated with visits to my GP he decided to send
doing really well and responding to
periods as it was near my monthly me for an ultrasound scan.
treatment. I was elated. It was
cycle. When the pills he gave me It was the scan which revealed that I fantastic. The CT scan in October
didn't work I was taken into the local had a big problem in my pelvic area. showed there had been a
NHS hospital for tests. After a week Things started to move very fast and considerable improvement on my last
of living on nil by mouth, the pain at this point I was asked to have a CT scan and very little disease to be
subsided and I was allowed home for scan followed by a visit to see a seen.
Christmas to be with my family (two consultant gynaecologist, who told
At an appointment to see the
teenagers and husband to look after). me I had a tumour on my ovary that
consultant four months later, I found
In early January 1989 I had a CT could be cancerous. I was then told
out that my CA125 had risen
scan that showed up something that that his team would call a meeting,
dramatically. I had a scan, which
really should not be there and by the discuss my case and decide whether
revealed the cancer had spread
end of January I was taken back into I should have an operation or start
around quite a bit. I was devastated.
hospital for a hysterectomy and chemotherapy. As the tumour was
removal of both ovaries. I was then too close to other organs, it would be I have finished my last round of
sent to another NHS hospital for five too much of a risk to operate and I chemotherapy, six cycles of
weeks of radiotherapy. Unfortunately, was put on chemotherapy mitroxantrone and taxol which was
as I was only 42, I was thrust straight immediately. It was such a scary given over two days every three
into an early menopause and time. weeks. Despite having lost my hair, I
because of the type of cyst involved feel well and hopeful for the future
HRT was out of the question. and busy preparing for my holiday.
However, I was very fortunate to be
spared a lot of the horrific symptoms Cancer and migraine
that some women get with the First the bad news, July 06, aged 61,
menopause. I was diagnosed with advanced
That was a good few years ago and I ovarian cancer. Since then, I have
consider myself very lucky to have had two complete courses of
been given such brilliant care in both chemotherapy and a hysterectomy.
Norfolk hospitals. After five years of So what is the good news? Well the
checkups I was discharged from good news is that the migraine
hospital. Now, I have annual blood attacks that have plagued my life for
checks, am aged 61 and have seven over 40 years (the same headaches
grandchildren and enjoy every minute that have recently been labelled as
of them. Chronic Daily Headaches) have
Pam Cooper virtually stopped. In the six months
before diagnosis, I needed to take 55
Thank you, Pam, for your story as it doses of Imigran (a considerable
is great to report on 20 years reduction on 10 years prior), but in
survival. Since your diagnosis, The plan was for me to have three the last six months I have only
treatment of ovarian cancer has chemotherapy sessions (carboplatin) needed 13 in total. Ironically since
changed. Nowadays women tend to and then have another scan to see if diagnoses and treatment I have felt
have chemotherapy after surgery, the tumour (or 'alien', as my mother much better, albeit it living with an
rather than radiotherapy. calls it) had shrunk enough for me to unknown future.
have the operation. After the second
Pauline's story scan it was decided that it had not Andrea Tench
I first became ill in December 2006 shrunk enough to operate, so I began
with what seemed to be a bad tummy another three chemotherapy
bug. My symptoms were diarrhoea, sessions. I have to say the
lack of appetite and tiredness. My chemotherapy was not as scary as I
GP became concerned after I had first thought it would be. The staff at
returned to see him with the same the hospital were very supportive and
symptoms a number of times and he kind. I continued to be very tired
12A pre-Christmas bargain! Marathon runners
We still have some stock of our 2006 and 2007 Christmas cards shine through the rain
which you can snap up at the bargain price of just £1.50 per pack
(plus P&P). Our cards can be purchased using your credit or debit Congratulations to all our London Marathon
card by calling 020 7299 6654. If you prefer, please complete the runners who had an amazingly successful
form below and send it together with a cheque made payable to day. In total they raised an astonishing
Ovacome, to the office. £14,500, and money is still coming in.
Particular mention to Andrew Bresler who
managed to haul a (rather soggy) ostrich
A B with him, and together they completed the
course in 4 hours 47 minutes, raising over
£3000.
A huge thank you to all our runners, their
families and supporters who have
contributed to this fantastic total.
Although applications via the London
Marathon website ffor next year are now
closed, Ovacome does have a number of
gold bond places for Ovacome runners, and
Snow White 160 x 160mm Luxurious Touch 140 x 140mm
will hold a draw in October. Priority will go to
Message: ‘With Best Wishes for Message: ‘With Best Wishes for those who have already applied for a place
Christmas and the New Year’ Christmas and the New Year’ in the regular ballot and/or to those with a
personal reason for running for Ovacome.
Please phone the office for more details.
D
Unbelievable Rona
Rona Murray, a tireless fundraiser,
sent us this note about her next
C exploit. We hope to bring you more
about her in a future issue.
Say sNOw .. to ovarian cancer
98 x 130 mm You can sponsor Rona by going to her
Peace and Joy (Dove) 140 x
fundraising page at
Message: ‘With Best Wishes for
140mm http://www.justgiving.com/rona_murray
Christmas and the New Year
Message: ‘Season's Greetings’
On 18 April, I will be leaving for the
Christmas card order form Canadian Arctic to trek 110 miles across the
Penny Ice Cap on Baffin Island. This may
Please return this form, with a cheque or postal order payable to seem a little unusual, but perhaps ‘unusual’
Ovacome, to Ovacome (Cards), PO Box 6294, London W1A 7JW should be my middle name. The trek will
_____ packs of Design A _____ packs of Design B involve ‘man’-hauling my own sled,
_____ packs of Design C _____ packs of Design D containing all the equipment and provisions
all at £1.50 necessary for a two-week trek, in
temperatures that could reach -40oC! And I
Please add the relevant postage and packaging cost: For 1–5 packs
am very excited (some would say mad)!
add £2.50; for 6–10 packs add £4.50; and for 11+ packs add £6.50
Fewer people have completed this
I enclose a cheque/postal order for £ _______ payable to Ovacome expedition than have scaled Everest!!
PLEASE PRINT CAREFULLY After several other challenges, this will be
NAME . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . my ‘swan-song’ in terms of fund-raising (I
am, after all, an OAP!) and I am hoping you
ADDRESS . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . will help me make it my most successful
..................................................... effort! I particularly want to help Ovacome
as a way of supporting my dear friend,
..................................................... Lizzie, who is battling this dreadful disease –
. . . . . . . . . . . . . . . . . . . . . . POSTCODE . . . . . . . . . . . . . . . . . . . . keep battling, Lizzie!
Contact Telephone Number . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . .
(in case of order query)
13Fundraising Ideas justgiving.co.uk
Charity Flowers adidas Women's Challenge justgiving.co.uk/ovacome
If you are sending flowers to a loved
The 2008 adidas Women's 5K puts “the fun back into
one or friend look no further than
Challenge (formerly the Hydroactive 5k) fundraising’ and changes the
Charity Flowers Direct: as well as
is a fun run for women of all ages taking way people give to charity.
beautiful flowers you help Ovacome as
place in London, Birmingham and Donors can give quickly, tax-
15% of the cost is sent to us. Please
Liverpool on Sunday 7th September. efficiently and easily. You
use the code OVA when ordering. Visit
www.charityflowers.co.uk or contact The Women's Challenge is a fun, can raise money for your
the office for a brochure. informal event that you can run, walk or favourite cause with
just cheer people along in the late minimum hassle. Friends
Recycle... for Ovacome summer sunshine. Every year Ovacome and family can donate on-
supporters and office staff run the event line with a credit or debit
Boost your green credentials and raise to raise money and spread the word
money for us by recycling old mobile card – so no more running
about Ovacome and this year we're
phones or used printer cartridges. All around with sponsorship
absolutely thrilled to have our patron,
makes and models of phone are forms or chasing money
Jenny Agutter, running for Team
accepted and any cartridges except after events!
Ovacome in London!
Epson. We receive around 50p for each
cartridge and around £5 for each mobile If you'd like to join us you can enter The website is user-friendly
phone. Why not try to arrange a online at (www.womenschallenge.co.uk/ and Ovacome is a receiving
collection at your place of work? onlinentry) or contact the Ovacome charity. Justgiving enables
office and we will send you an entry Ovacome to receive credit
Just put your mobile or cartridges in a form. £5 of your entry fee goes straight card donations and opens
padded envelope and send free of to your chosen charity. fundraising to friends and
charge to: Recycling Appeal, Freepost And don't forget to contact the office so family abroad who’d like to
nat 22768, Falkirk, Scotland FK2 9BR. we can send you one of our fundraising donate.
Don’t forget to quote the Ovacome packs!
reference number - 726235. To donate: Justgiving can
accept one-off or regular
donations. Please e-mail the
office if you donate to
Fundraising Materials Ovacome this way, otherwise
If you are organising or taking part in a fundraising event etc., please we are not able to thank you
consider the following materials. personally.
Quantity Required
To sponsor someone
Ovacome Details. A credit sized card containing involved in a fundraising
Ovacome's contact details. Free event: Individual fundraisers
Ovacome Aims Poster. A4 or A5, containing information have their own pages and
about Ovacome. Free you can sponsor them
Ovacome Blank Poster. A4 size, blank for your directly.
own message. Free If you are planning a
Ovacome Balloons. Pack of 30. Free fundraising event: You can
Ovacome T-shirts/running vests. (£6. Free to those set up your own fundraising
raising over £25). Please indicate size(s) S M L XL page.
Baseball caps (£4 each) Why not sponsor one of our
current fundraisers on our
Collecting tins
justgiving.co.uk web page?
‘Penny’ boxes for loose change
Ovacome’s justgiving contact
Fundraising pack
details are as follows:
Ovacome car stickers to be sold at £1 each. Free
to make a donation:
Name . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . www.justgiving.co.uk/ovacom
Address . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . e/donate
.................................................................
................................................................ . to create a fundraising
. . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . Postcode . . . . . . . . . . . . . . . . . . . . . . . .
page: www.justgiving.co.uk/
ovacome/raisemoney
Tel (Home) . . . . . . . . . . . . . . . . . . . . . . . . . (Work) . . . . . . . . . . . . . . . . . . . . . . . . .
Please indicate the amount you need and send your list to the office, with the
details form on the back page and a cheque payable to Ovacome if necessary.
14sources of information
This page lists various resources of information available treatments can change and new treatments become
from Ovacome. These are free to women with ovarian available. This enables Ovacome to keep our members
cancer and their families and friends. If you would like as up to date as possible. Other cancerbackup fact
any, please indicate your requirements below and sheets listed cover subject areas common to all cancers.
complete the form on the back page with your contact
details. Then simply send the whole of this page to us at Ovacome on Facebook
the office. If you would like more than one of any item We now have over 500 fans sharing their personal stories,
please contact the office. swapping information and discussing medical issues on
our own Facebook page. It’s a great place to view
Ovacome Fact Sheets pictures from events and fundraising activities, as well as
We have our own fact sheets on subject areas particular to get the latest information from Ovacome.
to ovarian cancer. If you are a Facebook member, why not join us? Just
search for Ovacome.
cancerbackup Fact Sheets
The fact sheets that concentrate on the different Ovacome fundraising materials
chemotherapy and other treatments are from See page 14 for a list of fundraising materials and an
cancerbackup. Ovacome have decided to have this order form.
arrangement with cancerbackup given the speed at which
Ovacome Fact Sheets
Tick if req’d
Tick if req’d
Treosulphan
12 Ovarian cancer and your sexuality
13 The role of radiotherapy in ovarian Combination Chemotherapies
cancer Paclitaxel and Carboplatin
14 The staging of ovarian cancer Hormonal Therapies
15 Is there a link between ovarian Tamoxifen (as used in breast cancer)
cancer and talcum powder? Other Treatments
18 Screening for ovarian cancer Erythropoieten (Eprex)
19 Fertility issues for women with G-CSF (Neupogen, Granocyte,
ovarian cancer Neulasta)
Steroids
20 Nutritional advice
Other Useful Factsheets
23 Fibre restriction for bowel obstruction
Germ cell tumours of the ovary
25 An overview of ovarian cancer (ovarian teratoma)
26 Treatment-induced menopause Primary peritoneal cancer
PICC lines (peripherally inserted
cancerbackup Fact Sheets central catheters)
Tick if req’d Implantable ports
Single Chemotherapies Avoiding infection when you have
Carboplatin reduced immunity
Cisplatin Controlling nausea and vomiting
Cyclophosphamide Mouth care during chemotherapy
Docetaxel (Taxotere) Scalp cooling
Epirubicin Ascites
Etoposide Pleural effusion
Gemcitabine (Gemzar) Peripheral neuropathy
Liposomal doxorubicin (Caelyx)
Financial issues
Paclitaxel (Taxol)
Topotecan (Hycamtin) Care of your pets when you have cancer
Leaflet: are you worried about ovarian
cancer in the family?
15You can also read
