NEWSLETTER AUTUMN 2013
AUDACIOUS APPROACHES HOW OCA TACKLES OVARIAN CANCER
CONTENTS 3
BENCH TO BEDSIDE A roundup of new developments in ovarian cancer research
4
A FIRST FOR THE UK
WELCOME
An update on the exciting project that is BriTROC
6
LASTING MEMORIES How Tribute Funds create a personal and lasting memorial
CELEBRATE CHRISTMAS Cards, jewellery and ideas for Christmas – all supporting OCA
7
PEDAL POWER RideLondon-Surrey 100 raises £25,000 for Ovarian Cancer Action
8
RESEARCH SYMPOSIUM Celebrating the last 5 years by looking ahead
10 AFTER OVARIAN CANCER Sexual wellbeing after treatment for ovarian cancer
Ovarian Cancer Action 8-12 Camden High Street London NW1 0JH
Welcome to our final newsletter for 2013. Ovarian Cancer Action has had a successful year and I'd like to celebrate some of our successes with you. Our results to end March 2013 saw record income and a commitment to research of over £1million. This has been no easy feat in the current climate and thank you all for your support in this achievement. Our 2013 campaign for Ovarian Cancer Awareness Month was a big success, thanks to many of you helping out and spreading the word. Since the last issue of our newsletter we celebrated the 5th Anniversary of the Ovarian Cancer Action Research Centre with a significant symposium, bringing together major international figures in the field for discussion, debate and pooling ideas. Read more about the event, and our new film about the work of the Research Centre, on pages 8 and 9. Please do watch the film and send the link on to your friends and family – it takes a fresh look at the achievements of the Research Centre team and how their unique way of working is leading to scientific advances. It's with great sadness though that I must let you know that two of our passionate Voices, and spirited fundraisers, died from their cancer this summer: Loretta Oliver and Rocky Scott. They were both an inspiration to us all and will be sorely missed by family, friends and all the team at Ovarian Cancer Action. As we approach Christmas, remembering our loved ones takes on an additional importance. Please take a look at our cards and gift ideas in the centre of the newsletter and consider taking part in the Big Give Christmas Challenge to help fund our essential work. My very best wishes to you all.
Charity registered in England & Wales (No. 1109743) & Scotland (No. SC043478) Trustees Daniel Harris John Harris CBE Jenny Knott Martin Paisner CBE Emma Scott Lord Turnberg of Cheadle Professor Sir Nicholas Wright Trustee (Chair) Allyson Kaye
Keep in touch
Gilda Witte Chief Executive
Twitter: @OvarianCancerUK Facebook: ovariancanceraction Call: 020 7380 1730 Email: info@ovarian.org.uk Visit: www.ovarian.org.uk
Editing/Writing/Production www.stargazeymarketing.co.uk Design www.joannewood.co.uk Disclaimer It should be noted that inclusion in the Ovarian Cancer Action newsletter does not imply endorsement of a participating organisation or its products.
2
Receive our newsletter by email
We're keen to keep our costs down and be more environmentally friendly. Please let us know if you'd like to receive our newsletter by email. Call 020 7380 1730 or email info@ovarian.org.uk.
BENCH TO BEDSIDE READING BRCA1/2 MUTATION – ROUNDTABLE Ovarian Cancer Action recently held a roundtable meeting at the Royal Society to discuss the complex challenges of genetic testing for the BRCA1/2 genes. Women with BRCA1 and BRCA2 gene mutations have an increased risk of developing breast and ovarian cancer, yet it is not standard practice for clinicians to talk to patients about BRCA1/2 genes or genetic testing. We believe this has to change and are campaigning to raise awareness of familial cancer and, in particular, BRCA1/2 mutations. 'We know there aren't any easy answers, but the issues need debating and women need to be part of that debate,' says Gilda Witte, Ovarian Cancer Action's Chief Executive. 'Our roundtable considered the broader impacts of genetic testing and has
helped us develop an evidenced policy position.' Our recommendations for change are that: • All women with ovarian
cancer should be BRCA1/2 tested. • Women who have
ovarian cancer should be BRCA1/2 tested at the point of diagnosis. • There should be clearer
pathways to more information from GPs and clinicians about the family implications of BRCA1/2. This should include the provision of advice and counselling, and aid the early diagnosis of breast, ovarian and prostate cancer amongst BRCA1/2 families.
NEW LARP1 STUDY
tumours with a high level of LARP1 are more resistant to chemotherapy, and that the protein 'switches on' the manufacture of harmful proteins in cancer cells. This next stage of research will look at finding ways to 'switch off' the protein to make cancer cells more responsive to treatment. Year 1 funding for the programme has been given by The Laura Mercier Cancer Fund. Launched in 2012 by Laura Mercier, the global cosmetics and skincare company, the fund exists to support research and educational efforts to help diagnose, treat and support women with ovarian cancer.
NEW CLINICAL TRIAL
Dr Sarah Blagden is to lead an exciting new research programme at the Ovarian Cancer Action Research Centre, investigating the LARP1 protein.
The Molecular Therapy Group at the Ovarian Cancer Action Research Centre has begun an investigator-led clinical trial of a new oral AKT inhibitor in partnership with GlaxoSmithKline.
Her team has already shown that ovarian cancer
The new drug will be combined with
chemotherapy drugs Carboplatin and Taxol in ovarian cancer patients who have developed platinum-resistance. The trial, which will be led by Dr Euan Stronach, is part of a three-year international study. So far 15 patients have been recruited – nine in the UK at Hammersmith Hospital, and six in Australia at the Peter MacCallum Cancer Centre in Melbourne, where the trial will be managed by Professor David Bowtell, Professor of Cancer Genomics and Genetics and Visiting Professor of the Ovarian Cancer Action Research Centre. (See page 8.) The laboratory has already begun biopsy analysis. Professor Hani Gabra, Director of the Ovarian Cancer Action Research Centre says: 'This AKT-RES trial will be applicable to other cancers as well as ovarian cancer and is a promising development in the treatment of platinum-resistance.' 3
'WHEN I TELL PEOPLE ABOUT BRITROC MOST OF THEM JUST WHISTLE IN AMAZEMENT, BECAUSE WHAT WE'RE DOING IS INCREDIBLY EXCITING AND AMBITIOUS,' SAYS PROFESSOR IAIN McNEISH
A FIRST FOR THE UK, AND THE WORLD Like many great ideas, BriTROC (the British Translational Research Ovarian Cancer Collaborative) came from a chance discussion, when a group of delegates met during the 12th Helene Harris Memorial Trust International Forum on Ovarian Cancer in 2011. 'It was one of the best meetings I've ever been to,' says Professor McNeish. 'All of us were so excited by what we'd heard during the day. That evening, over a beer, we started to ask "What if…?" and the idea just grew.' Now, two years later and funded by Ovarian Cancer Action, that idea is BriTROC. Nine UK research centres working 4
to create a tissue bank of ovarian cancer tumour samples, with at least two samples from each patient – one from the time she was diagnosed and the other when her cancer returned. Having two separate samples from the same cancer will help researchers identify the genetic changes that occur when the disease becomes resistant to platinumbased chemotherapy – the biggest challenge clinicians face in treating ovarian cancer. While BriTROC's objective sounds straightforward, it is the scale of the collaboration that makes it exciting. There is nothing else like it in the world.
'Realising no-one else has done this before sometimes keeps me awake at night,' says Professor McNeish. 'We're doing something that we all believe is incredibly important, and we'll only achieve our goal by collaborating.' Since BriTROC was launched late last year, Professor McNeish and his colleagues have been setting up the systems and procedures that underpin the project. 'One of our priorities has been to agree the key questions we have to answer,' says Professor McNeish. ‘DNA is remarkably stable stuff but the amount of tissue we get is quite small, so
we have to make sure we answer as many questions as possible with the finite amount we'll have.' For many cancers, taking tumour biopsies when patients relapse is routine. But although women with ovarian cancer may have a biopsy done when they are first diagnosed, it is not usual to take further tissue samples after that. BriTROC marks a fundamental shift and, once collected, samples will be sent to the new Wolfson Wohl Cancer Research Centre in Glasgow to be stored and analysed. Now the BriTROC centres are recruiting patients. Any woman with relapsed ovarian cancer may be
Wolfson Wohl Cancer Research Centre (Glasgow)
THE NINE UK BRITROC CENTRES
1 Wolfson Wohl Cancer Research Centre (Glasgow) 2 Edinburgh Cancer Research UK Centre (Edinburgh) 3 Northern Institute for Cancer Research (Uni. of Newcastle) 4 St. James's Institute of Oncology (Leeds) 5 The Christie (Manchester) 6 Cancer Research UK Cambridge Institute (Cambridge) 7 Barts Cancer Institute (London) 8 Ovarian Cancer Action Research Centre (London) 9 Northern Ireland Cancer Trials Centre (Belfast City Hospital)
eligible to participate, as long as a tissue sample of her original tumour biopsy still exists. And while the new biopsies are unlikely to change her current treatment options, they will provide vital information to help change ovarian cancer treatment in the future. 'We know how much we're asking of our patients,' says Professor McNeish. 'A biopsy is an invasive procedure but we've done everything we can to make sure there will be no horrible side effects, and that we can get good tissue samples safely. The women who have helped us so far have been absolutely wonderful. 'In the future tailored
treatments will be normal for ovarian cancer – but to get to that stage we have to understand more about how platinumresistance develops. With BriTROC, we're attempting something completely new to advance our knowledge. I'm desperately keen for women to participate and help us find answers to these very important questions.' Iain McNeish is Professor of Gynaecological Oncology at the Institute of Cancer Sciences, University of Glasgow, Wolfson Wohl Cancer Research Centre, and Beatson Institute for Cancer Research.
CAN YOU HELP?
The BriTROC centres are now actively recruiting patients, and the success of the project depends on getting 300 women with recurrent ovarian cancer to volunteer. Biopsies involve removing a small piece of tissue from a recurrent ovarian cancer tumour. The procedure is done under local anaesthetic using a biopsy needle, guided by a CT scanner or ultrasound machine. It should take no longer than an hour and patients do not require an overnight stay in hospital. The study will also involve some associated blood tests; and if a volunteer has ascites the BriTROC centres would also like a fluid sample to contribute to the study. Catherine Anderson was an early volunteer. She says: 'I didn't think twice about it. In the past someone has done something that has helped me. Now it's my turn to help improve treatments for someone else. Everyone was so kind when I had the biopsy and there was no discomfort. It took very little time in theatre and afterwards I just dozed in bed because I had to lie on my back for four hours.'
Find out more If you would like to find out more about volunteering for the BriTROC study please contact Project Manager, Liz-Anne Lewsley. Call 0141 301 7193 or email liz-anne.lewsley @glasgow.ac.uk 5
We never forget the people we love, whether they're here with us or not. When we lose a loved relative or friend we hold onto cherished memories: the special times as well as the simplest things from daily life. Ovarian Cancer Action Tribute Funds celebrate these lives and memories. And building a Fund to raise money for research and awareness work creates a very personal and lasting memorial. Bernadette Hammerton's daughter, Natasha, died of ovarian cancer in June 2008, aged just 27. 'We could never forget Tasha, and so we'll carry on raising money for her Tribute Fund. Not just to celebrate her life, but as a way of continuing her fight against the disease,' says Bernadette. It seems that fundraising is in the family's DNA now, because in the five years since Natasha died they've donated more than ÂŁ13,000. 'It was Tasha who started raising money for Ovarian Cancer Action and we don't see any reason to stop,' says Bernadette. 'She always said "Don't forget me, but don't let this ruin your life", so we carry on fundraising. It's her legacy to us and it's such a positive way to remember her.' Every March the family organises a Dash for Tash in Horsham, when family and friends turn out to run, or walk, either a onemile or five-mile circuit. There's food and drink, and fun and laughter, as well as a raffle organised by Natasha's sister, 6
Natasha's sister, Bethany Hammerton-Cooke at this year's Dash for Tash
AN ENDURING GIFT
CREATING A LASTING LEGACY
Bethany, which this year raised more than £700. Whether you choose to raise funds or leave a gift in your will, even small sums of money add up to become something significant. Natasha's family and friends donate money throughout the year – everything from her brother Joe's sponsorship money for running marathons, to Bethany's fundraising at her school. Natasha's other brother, Alex, fits fundraising around his life in the RAF
as far as he can, although serving in Afghanistan has restricted his opportunities this year. 'As a family we love seeing our Tribute Fund grow,' says Bernadette. 'I'm so proud that my other children are still battling for Tasha. A lot of Bethany's friends didn't even know her but they raise money in her name. Our Fund is a very personal place where people still share their thoughts and memories, and we draw strength from the messages
people leave. We all feel so lucky we're not ill. It would be wrong not to raise money to help find a cure for ovarian cancer, and I know this is what Tasha would think too.'
Find out more Celebrate the life of someone you love by starting an Ovarian Cancer Action Tribute Fund or leaving a gift in your will. Visit www.ovarian. org.uk/donate
❄ ❄ ❄C ELE BRA TE CHR IST Donation of 50p per pack. MAS ❄ A sample of our card designs. Please visit
CHRISTMAS CARDS impress
www.ovarian.org.uk for our full collection, including religious, traditional, family and money wallet cards.
impress
p u b l i s h i n g
impress
p u b l i s h i n g
Cracking Christmas Courtesy of Shutterstock
CRACKING CHRISTMAS
Greeting: With Best Wishes for Christmas and the New Year Size: 126 x 126 mm | Qty: 10
p u b l i s h i n g
The Snowman Courtesy of Image Source
Impress Publishing - CT1 3TE
OCQ04
Winter Woolies Courtesy of Ardea
Impress Publishing - CT1 3TE
VILLAGE SKATERS
OCQ05
Impress Publishing - CT1 3TE
THE SNOWMAN
Greeting: With Best Wishes for Christmas and the New Year Size: 126 x 126 mm | Qty: 10
WINTER WOOLIES
Greeting: With Best Wishes for Christmas and the New Year Size: 126 x 126 mm | Qty: 10
Greeting: Season's Bleetings Size: 126 x 126 mm | Qty: 10
OCQ01
OCQ03
impress
p u b l i s h i n g
Village Skaters Courtesy of Advocate-art
Impress Publishing - CT1 3TE
Impress Publishing - CT1 3TE Winter Robin Trio Courtesy of Ardea, NHPA and Alamy p u b l i s h i n g
impress
impress
impress
p u b l i s h i n g
impress
p u b l i s h i n g
Santa Snow Angel Courtesy of Ardea and Getty
p u b l i s h i n g
Peace on Earth Courtesy of Sophie Royles
Impress Publishing - CT1 3TE
OCQ07
SANTA SNOW ANGEL
Greeting: Season's Greetings Size: 126 x 126 mm | Qty: 10
12 Days of Christmas Courtesy of Image Source
Impress Publishing - CT1 3TE
WINTER ROBIN TRIO
Greeting: Season's Greetings Size: 195 x 86 mm | Qty: 10
OCQ08
Impress Publishing - CT1 3TE
PEACE ON EARTH
Greeting: With Best Wishes for Christmas and the New Year Size: 126 x 126 mm | Qty: 10
12 DAYS OF CHRISTMAS
Greeting: With Best Wishes for Christmas and the New Year Size: 126 x 126 mm | Qty: 10
CALL 01227 811 667 TO ORDER OR COMPLETE THE FORM BELOW Please complete this form in BLOCK CAPITALS. Fill in the quantities of items required and total. Calculate the order total and then add Postage & Packaging cost: Order value up to £20.00 = £3.75 P&P; Order from £20.01 to £50.00 = £4.75 P&P; Order from £50.01+ = £6.75 P&P. Add together your Sub-total, P&P and Donation box and complete the Total box. Please cross cheques and make payable to 'Impress Publishing' OR complete the credit card section below, and return to Ovarian Cancer Action Christmas Cards, Appledown House, Barton Business Park, New Dover Road, Canterbury, CT1 3TE. Alternatively call our credit/debit card order line on 01227 811 667 open from 8:30am to 7pm Monday to Friday. For personalised cards please call 01227 811 668 for a separate order form. Orders will be accepted up until 13 December or up until 6 December for personalised cards. Please allow 14 days for delivery or 21 days for personalised cards. Name: Tel: Address: Postcode: Design name:
Cracking Christmas Village Skaters The Snowman Winter Woolies
Sub-total £
Qty: Price:
Total:
£3.95 £ £3.95 £ £3.95 £ £3.95 £
Design name:
Santa Snow Angel Winter Robin Trio Peace on Earth 12 Days of Christmas
P&P £
Donation £
Qty: Price: £3.95 £3.95 £3.95 £3.95
Total: £ £ £ £
Total £
I AUTHORISE YOU TO DEBIT MY ACCOUNT WITH THE PURCHASE ABOVE Card no: Issue number:
Security number:
Signature:
Start date:
Expiry date:
(last 3/4 digits printed on the signature strip of your card)
Date:
Using Gift Aid means that for every £1 you give, we get an extra 25p from HM Revenue and Customs, helping your donation go further. I am a taxpayer. I would like to Gift Aid all donations I have made for the past 4 years to Ovarian Cancer Action and any I make in the future, until I notify you otherwise. Signed: (To qualify for Gift Aid, what you pay in Income and Capital Gains Tax must at least equal the amount we claim in the tax year.) Council Tax and VAT do not count.
LOVE THESE
GIFTS
3
1
4
2
5
Ovarian Cancer Action has recently gone into partnership with online jeweller Make a Difference. M.A.D. offers both classic and contemporary jewellery, watches and accessories, with a dazzling choice to suit all tastes and budgets. The wonderful thing about choosing a gift at M.A.D. is that 100% of the profits from your purchase are given to Ovarian Cancer Action – with no cost to you or to us. Here are just a few examples of M.A.D.'s products – but go on line at www.choosemad.com/ovarian to find the full choice, whether you're shopping for Christmas presents or to treat yourself. 6
7
1
8
9
9ct white gold 0.15ct floating diamond heart pendant £441. 2 J-JAZ Swarovski crystal pearl drop earrings £36. J-JAZ micro pavé sapphire and white CZ drop earrings £75. 4 18ct white gold 0.85ct diamond drop earrings £2,226. 5 Grey stretch 4mm ball bracelet with 10mm sterling silver crystal bead £13.50. 6 Sterling silver circle hoop bracelet with a central rose coloured hoop £14.04. 7 Men's gold money clip £611. 8 9ct white gold diamond & blue topaz pendant £675. 9 J-JAZ micro pavé champagne and white CZ drop earrings £75. 3
A DISTINCTIVE
CELEBRATION All of the Ovarian Cancer Action team are queuing up to get our hands on this super desirable piece of jewellery. We love its contemporary design, quality materials and versatility (it can't decide if it wants to be a bracelet or a necklace – so it's both!) Most appealing though is that this charm is all about celebrating someone we love or something we cherish. The main ring is engraved with the word 'CELEBRATING' and there's a space for adding someone special's name, perhaps someone we have lost to ovarian cancer. Or it could be celebrating something significant for us – celebrating life, celebrating hope or even a special event. The online jeweller Make a Difference (M.A.D.) has created this limited edition charm bespoke for us and is donating an amazing 50% of its sale price to Ovarian Cancer Action. Here's the lowdown: • £50, with £25 donated to Ovarian Cancer Action. • The charm has three entwined sterling silver rings on black corded silk with sterling silver clasps. • The cord is adjustable to necklace or bracelet lengths (full length 43.2cm). • Each charm can be engraved with up to 10 letters for an additional £15 (allow 14 days for delivery). • The piece can even be customised for you with a diamond set into the central ring, or a gold or
diamond bracelet (price on application).
Order now: We're sure these will be a hugely popular Christmas gift so do follow our lead and order your charm at www.choosemad.com/ovarian or call 020 3668 2994. If you place your order before 31st October you will also receive a 40.6cm sterling silver curb chain as a gift, giving you even more options to wear with flair!
❄ ❄ ❄C ELE BRA TE CHR IST MAS ❄
Christmas Challenge 2013 Great news! Ovarian Cancer Action has been accepted as a Big Give Christmas Challenge charity. We’ll be raising money for our BriTROC project (see page 5 of this newsletter). The Big Give is funded by the Reed Foundation and the Christmas Challenge is a chance for us to obtain matched funding on donations made online on the Big Give website during 5th, 6th and 7th December.
How does it work? ❅❅ There are some rules, but it’s worth it to maximise the funds we hope to achieve for the groundbreaking BriTROC project. ❅❅ Every day for three days (5th, 6th and 7th December) giving opens on the website at 10.00am. ❅❅ There’s a limited fund of money available so the earlier donations are made the more likely Ovarian Cancer Action is to qualify for matched funds from the Charity Champion Fund.
What do I need to do? ❅❅ Keep this newsletter with all the Big Give information. ❅❅ Put a date in your diary and a reminder on your phone as the Christmas Challenge doesn’t start until 5th December. ❅❅ Follow us on Facebook and Twitter for Big Give Christmas Challenge reminders (Facebook: ovariancanceraction, Twitter: @OvarianCancerUK).
All the Big Give Christmas Challenge information is at www.TheBigGive.org.uk Thank you for your support – with your help we can make this a Win-Win opportunity.
Diana Malling with her daughter
FUNDRAISING PEDAL POWER! Some of our RideLondon-Surrey 100 team
A FESTIVAL OF CYCLING It's official. Britain is cycling mad! And proving the point is the fact that more than 15,000 amateur cyclists completed a 100-mile race in the first Olympic legacy cycling event: the Prudential RideLondon-Surrey 100. Amongst them were 27 Ovarian Cancer Action supporters who, together, have raised more than £25,000 for the charity. An incredible achievement. RideLondon-Surrey 100 attracted a huge amount of media attention, and is set to become the cycling equivalent of the London Marathon in terms of popularity and profile. 'We secured places because we wanted to give our supporters the chance to be part of this brand new, unique event,' says Nina Gopal, Ovarian Cancer Action's Head of Fundraising.
'It was a fantastic day. And within 24-hours of the ballot opening for next year's race more than 50,000 people had registered, so we're expecting our 2014 places to be hotly contested.' Two of this year's riders were Diana Malling and her daughter, who attracted TV and press attention because there were very few entrants racing in fancy dress. Diana has previously completed the Women V Cancer cycling challenge in Kenya, and she will be tackling Cuba later this year. She says: 'I thank my lucky stars I've never had cancer. But if I did I'd feel so much better knowing so many people were giving their time to help out. If the small things I can do will help in any way they're worthwhile.'
Whether you're a recreational cyclist or a serious road racer, cycling is a great way to raise money for Ovarian Cancer Action. Here's just a taster of some of the cycling events on offer. For more information visit our website at www.ovarian.org.uk/get-involved-fundraise
IN THE UK • Conquer
the breadth of Britain on a bike. Approximately 219km over four days, from Whitehaven toTynemouth, including overnight accommodation and meals.
• Cycletta
New Forest. A women-only bike event starting from Beaulieu Palace, with three distance options: 20km, 42km or 82km.
IN EUROPE • Euro
City Cycle Challenge. Around 483km, in 3 countries to 3 capitals: London, Amsterdam and Brussels. A 5-day trip that includes ferry, Eurostar, accommodation and food.
WOMEN V CANCER
Now in its third year, the remarkable Women V Cancer series offers challenges in the UK and overseas. • Cuba
and/or China. Two 10-day adventures each covering approximately 400km. Everything is included: flights/transfers, food and accommodation, guides, mechanics, medical support and bikes.
• Ride
the Night. The first women-only night cycle challenge launches in May 2014. A 100km route that starts and ends at the Royal Windsor Racecourse and takes in all the sights of London in between. See the back cover of this newsletter for more details. 7
TAKING ACTION INTO PRACTICE
CELEBRATING FIVE YEARS OF ACHIEVEMENTS Ovarian Cancer Action and the Research Centre held a Celebratory Symposium in London in July. Organised jointly with the West London Gynaecological Cancer Centre, it marked the 5th and 10th anniversaries of their establishment at Imperial College, London. Speakers and guests attended from around the world, and although the aim was to celebrate achievements, the focus of the day was not to look back but forward. Presentations assessed where ovarian cancer research stands now, and considered what needs to be done next. And in his keynote lecture, Professor David Huntsman, Canada's leading ovarian cancer pathologist, showed 8
that the future will need to include both disease management and cure. Allyson Kaye, Chair of Ovarian Cancer Action, believes there will soon be breakthroughs. 'Our knowledge has really advanced in the past five years, and every step forward informs the direction of our research programme,' she says. 'Translational research is our absolute priority. We won't do research unless it's relevant for patients, so they can quickly benefit from the scientific discoveries being made.' The esteem in which the Research Centre is held was underlined as speakers recognised the excellence of its research programme
and the role it plays in so many international collaborations.
new drug treatments identified in research from other countries.
They also paid tribute to Professor Hani Gabra, Director of the Ovarian Cancer Action Research Centre, and his team; and recognised the enormous contribution of the patients who agree to donate their tumour tissue for research.
The day was perhaps best summed up by Dan McLean, Ovarian Cancer Action's Head of External Affairs: 'It was notable that every presentation was grounded in patient care. And achieving the best outcomes for women with ovarian cancer was at the heart of everyone's work. I came away with a clear view that the Centre's research, treatment and surgery is pioneering, and internationally recognised as such. The day was inspiring.'
A common thread throughout the day was that it was time to be brave with treatments for ovarian cancer – from taking a more aggressive surgical approach at diagnosis, to trying
Professor Hani Gabra at the Ovarian Cancer Action Research Centre
CAPTURING THE INSPIRATIONAL WORK A short documentary film about the Ovarian Cancer Action Research Centre shows how scientists there are bringing radical treatment from the laboratory directly to patients in the clinic.
these scientists are at the top of their game so I needed to be on my toes all the time,' says David. 'I didn't want to insult their intelligence by dumbing down my questions too much.'
For director David Baksh, making the film was a step into the unknown.
A second day was spent at the Research Centre capturing what David describes as 'lab beauty': close-ups of equipment and cancer cells, as well as filming people as they worked.
'Before we did anything I had to understand how the different teams and disciplines work together, and then link the strands to tell the story in an interesting way,' he says. One day was set aside for filming interviews. 'All
'We've attempted to convey how exciting the work being done at the Research Centre is,' says David. 'And the
NEW COLLABORATION, SHARED GOALS The Ovarian Cancer Action Research Centre has embarked on an exciting collaboration, appointing Professor David Bowtell as Visiting Professor. Professor Bowtell is Head of Cancer Genomics and Genetics at the Peter MacCallum Institute in Melbourne, Australia, and one of the world's foremost experts on ovarian cancer. His new role means he will spend 20% of his time working alongside Professor Hani Gabra and his team in London researching platinum chemotherapy resistance. 'David Bowtell is a pioneer in his field and we're delighted he's going to work with us,' says Professor Gabra. 'This collaboration is a really
significant step forward for our research.' Professor Bowtell and his team in Melbourne have already made significant discoveries about BRCA gene mutations; and in London, Dr Euan Stronach has identified how ovarian cancer cells generate platinumresistance. Combining this better understanding of the biology of drug resistance will offer routes to new treatments.
From the film: Dr Christina Fotopoulou, Surgeon, Ovarian Cancer Action Research Centre
honest remarks from one of Ovarian Cancer Action's Voices, Florence Wilks, at the end of the film are a remarkable testament to the existence and importance of this organisation.'
Watch and share
by mixing travel and telecommuting they will be developing new ways of working for the next generation of scientists.
an anatomical location.
'In the last five years the clouds have parted a bit,' says Professor Bowtell. 'We now know ovarian cancer is not a single disease – it's several different diseases sharing
Visit our website at www.ovarian.org.uk/ what-we-do/ourresearch-centre/ research-centre-film
'While our first-line treatments for the early stages of the disease are fairly good, drug selection for recurrent disease is pretty random. We have to do better than that, and all of us working in this new collaboration believe this is our chance to change things.'
Professor David Bowtell
'Our collaboration makes perfect sense because what we're doing at the Peter Mac fits so nicely with the work Euan is doing in London,' says Professor Bowtell. As an added bonus, both he and Professor Gabra believe that 9
cancer had been left unable to enjoy sex,' says Dr Blagden. 'I wanted to explore the issues to see what could be done.'
Dr Sarah Blagden with a patient
SEXUAL WELLBEING
BBC RADIO 4'S 'WOMAN'S HOUR' FEATURED THE RESULTS OF A NEW SURVEY
The survey had been completed by Dr Sarah Blagden of the Ovarian Cancer Action Research Centre, and followed an earlier study into the
issue of 'survivorship' – the journey back to normal life after cancer. 'Our first survey found that many women who had been treated for ovarian
Angela with her husband
ANGELA PROFIT'S STORY Diagnosed with Stage 4 ovarian cancer in April 2001, Angela Profit was given less than a year to live. Her cancer had spread to her lungs, so radical surgery was required, followed by chemotherapy. Since then she's had four 10
relapses, each followed by chemotherapy and hair loss. 'The subject of sex has never been broached by my cancer doctors, but considering what they've been dealing with perhaps that's not so surprising,' says Angela.
As the Woman's Hour programme pointed out, a man recovering from prostate cancer would routinely be asked about sexual function and offered help. However, for some reason a discussion about sexual wellbeing is rarely, if ever, offered to women. Dr Blagden's latest survey reveals some stark data. Of the 102 respondents 43% now had little or no desire for sex. Physical factors were a significant contribution to sexual problems; of those having sex 77% reported pain or discomfort and 87% had problems with vaginal dryness, with 50% rating this as severe.
'I was divorced and in the early stages of a new relationship when I first discovered I had ovarian cancer. When I started to feel better I wanted my sex life back but it's as if a switch has been pulled and my sex drive has been wiped out. 'I mentioned to my consultant that my sex drive wasn't what it had been but the poor man was too embarrassed to talk about it. So I saw another specialist who gave me testosterone patches to kick-start my libido – really because I didn’t want it to always have to be my partner who took the initiative. 'I remember thinking that even if we didn't have a long future together I wanted to make it the best
'The sad thing is that many women suffering from these problems believe they are alone,' says Dr Blagden. 'And because sex is rarely discussed at their posttreatment appointments they don't realise help is available. I hope this survey will start to lift the taboo on the subject of sexual wellbeing; and I'm so grateful to the Ovarian Cancer Action supporters who responded so frankly to our survey questionnaire.'
Listen and share You can listen to the Woman's Hour programme on the BBC's website at www.bbc.co.uk/ programmes/b036knvs future I could; and I felt I owed him a proper sex life, even if it wasn't the sex life we'd had before.' Angela's partner is now her husband, and he's been a tower of strength during her different courses of treatment. 'When there have been problems we've laughed our way through them,' says Angela. 'The worst aspect of all this is that everything that makes you a woman is taken away so suddenly, and it's taken time, patience and determination to regain this. But many of my friends who've had cancer find sex very painful. I've never had to use vaginal moisturisers and sex is still extremely pleasurable, so I know I'm one of the lucky ones.'
Angela Walker
Florence Wilks, who was also interviewed on Woman's Hour
MORE INFORMATION
If you have difficulties with sex after your treatment for ovarian cancer, consider the following: • You're
ANGELA WALKER'S STORY 'Until I was interviewed for Woman's Hour I thought my problems were my own,' says Angela Walker. 'Now, after all these years, at least I'm in touch with Sarah Blagden and hope I can get some help.' Angela was diagnosed with ovarian cancer in 2003, and again two years later when her cancer returned. 'The treatment leaves you without any sort of sex drive as well as physical side effects,' she says. 'I didn't think there was anything I could do about the pain I experience during and after sex. And sometimes it seems wrong to be concerned because, after all, I'm still alive. 'I did raise the subject of sex with my oncologist about seven or eight years ago, but it was obviously a discussion she didn't want to have,' says Angela. 'She just told me to try K-Y Jelly and since then I haven’t spoken to anyone else. 'It's been incredibly
difficult for me and for Hugh, my husband, who's always concerned about hurting me. He's been wonderful but he feels it's partly his fault, and I feel guilty at losing my sex drive. Of course it's put pressure on our relationship. We don't argue but it's just so difficult to talk about.' As an Ovarian Cancer Action Voice, Angela is used to being interviewed. But it was still a big decision to agree to speak on Woman's Hour. 'One of our friends asked Hugh if he'd known I was going to be on the programme. But I felt the decision wasn't about Hugh, or even about me. I wanted to speak so other women realise they're not alone. It's almost the worst thing – this feeling that your problems are only yours, and that there's no-one you can talk to. All of us have to be braver about talking to our doctors and getting the help we need. We shouldn't have to suffer in silence.'
not alone. Our survey showed the majority of women suffer with sexual difficulties after ovarian cancer treatment.
• Use
vaginal moisturisers, which can be bought over the counter. Brand names include Replens and Sensilube. Use regularly, every 3 days, to help burning, itching or discomfort caused by dryness.
• In
addition to starting a course of vaginal moisturiser, use a lubricant during sex e.g. a water-based preparation such as K-Y Jelly or a silicon-based one like Pjur.
• Don't
suffer in silence. Tell your doctor or oncologist that you're having problems. They can: >> Provide
vaginal dilators to overcome painful intercourse
>> Prescribe
topical oestrogens to reduce vaginal dryness and sensitivity
>> Refer
you to a psychosexual counsellor if you have an emotional block about sex or your body image
>> Refer
you to a menopause clinic.
• Menopause
clinics provide advice about all aspects of menopause complications, from when to use HRT to how to prevent osteoporosis. A list of the menopause clinics around the UK can be found at www. menopausematters.co.uk/clinicfinder.php
• Talk
to other women. The Daisy Network supports those affected by premature menopause. As well as their online forum there are volunteer networkers who can offer support. Visit www.daisynetwork. org.uk 11
ction for charity lifechangingevents