Thursday, 17 December 2015

Uncertain, but encouraging

The UKTOCS ovarian cancer screening trial presented its impact of screening on cancer mortality results this morning at the Royal College of Obstetricians and Gynaecologists in London. They live streamed the event, so I was able to dip in and out as the meeting took place.

While not definitive, the results certainly suggest that screening may well reduce mortality.  Another three years will be required to confirm the presence of a late effect of reduced mortality.  In the words of Professor Ian Jacobs, who chaired the meeting, there is "encouraging evidence of mortality reduction".

Diagnosis at an earlier stage was shown and may be encouraging, but it is really only a breakthrough if in practice that leads to a reduction in the number of women who die from the disease.  Otherwise the harms of screening (which include complications from what turns out to be unnecessary surgery) will not outweigh the benefits.

The meeting heard from, amongst others, patient Sarah Smith, Professor Usha Menon on the background, design and implementation of the trial, Professor Lesley Fallowfield on the psychological outcomes and Professor Max Parmar and Dr Steve Skates on the mortality results.

The background information to this trial includes types of screening, ultrasound only or multi-modal and the personal CA125 algorithm for each woman rather than using an all purpose cut-off point.

Professor Fallowfield presented data on anxiety, the effects on the lives of the participants (especially those recalled for additional testing) and those who left the trial.  This presentation was particularly interesting for me as I could relate it to my own feelings while in the 'sister study' UKFOCSS (which has yet to report on the second phase in which I took part).

The mortality results were presented in several ways, with the multi-modal arm showing a reduction in mortality of 15% overall.  There were clear differences in results for 0 to 7 years and 7 to 14 years of screening, which chimed with pervious studies showing that any benefits were seen in the long rather than short term.  One presentation of results excluded prevalent cases by looking at the point at which levels of CA125 rose in order to exclude those where ovarian cancer developed prior to entry into the trial.

While there is no definitive evidence that screening saves lives, there is evidence of a late effect and this reflects what was found in the earlier PSA marker trial for prostate cancer.  It is consistent with a finding in UKCTOCS that there was an 8-9 year period for ovarian cancer deaths to show up in the control arm and the finding that the curves are still diverging.  We need another three years of follow up to observe this late effect and therefore we are still in a period of uncertainty.

In his summing up, Professor Jacobs pointed out that the trial started with some pieces of the jigsaw in place, while we can say that the trial has now been able to add some others such as a high level of compliance, sensitivity and a shift in diagnosed disease stage.  The pieces relating to reduced mortality and cost effectiveness are still to fall into place and complete the picture.

Both Professor Menon and Professor Jacobs paid tribute to the trial participants with Professor Menon making the point that it cost the women in both time and money, as the trial was unable to pay the expenses (travel, parking costs) of attending sometimes late running appointments.  Professor Jacobs closed the meeting by inviting applause for the participants.

So the conclusion is that we are not yet in a place where population screening for ovarian cancer can be recommended, but that day may come.  A bit disappointing not to have a recommendation but, in view of the benefit v risk controversies that have arisen in relation to breast screening, it is better to get things on a firm footing at the outset.  Given that it has taken 30 years to get to this point, it is worth waiting another 3 for a definitive answer.

CRUK's Scienceblog has an excellent graphic indicating where we are with this at the present.


Wednesday, 16 December 2015

Ovarian Cancer Screening Trial results

A few weeks ago when blogging about the last day of  I mentioned that results of the UKCTOCS trial would be live streamed this month.

That will happen tomorrow between 10.00 and 12.30 hrs GMT.  Further information, including the agenda and a link to the live stream can be found on the trial web site at:

This is population screening trial for ovarian cancer with, in some cases, more than 13 years follow up.  There was also a screening study for high risk women - UKFOCSS - but that is not yet ready to report as the last woman was recruited into the trial in only 2010.

Monday, 14 December 2015

Change of Plan

Things got a bit busy and I am sorry that I haven't yet posted on the NCRI conference posters.

Then last week I was in Baveno for the European Commission Initiative on Breast Cancer's Plenary meeting.  There were posters here too, so my aim now is to gather my notes from the Plenary and then to do blog post on posters from both events.

Monday, 23 November 2015

Challenges - of one sort or another

Wednesday at the NCRI Conference was another full and varied day.

Back at the Dragons' Den on the Monday, a challenge was set.  AstraZeneca had 3 teams (1 in-house and 2 external) working on a 50hr challenge to design an app that would be useful for cancer patients.  The teams took away information given to them in conversation with patients before setting to work on their apps - with one team engaging with 3 groups in different global time zones to maximise their 50 hours!  The teams came back on Wednesday morning to present their offerings and give us an opportunity to try them out before we voted at lunchtime for our favourite.

It was a fun project but with serious intent and support from the Christie hospital in Manchester.  Each team had picked up on different emphases but all had taken forward the needs we'd expressed around being in control, keeping and using information, and liaison between providers.

I dipped in and out of the presentation because I was keen to attend part of one of the parallel sessions.  However, I did manage to see each app demonstrated and have an in-depth look at one and a half!  Each app had its strong points and we were asked to give feedback on them all.  I had a clear favourite based on approach, content and a very clean interface.  This must have chimed with other people, as it emerged as the winner.  Many congrats to pebble{code}.  Their app even included tracking of a smart sample jar/tube, which could be tracked in the same way as a parcel.  This sounds great to me although I'm not entirely sure how the health professionals would like it ...

My personal preferences were for an app that would help keep track of appointments and information and which would provide somewhere to record and keep notes.  I was much less interested in using it as a journal or means of connecting with others.  In part, this may be because there are already well established routes for women treated for breast cancer to connect; I might feel differently if I was being treated for one of the rare cancers.

In between I dashed out to the session on early diagnosis, particularly to hear from Usha Menon, who was updating on the UK ovarian cancer screening trials, and from Janet Dunn on the Mammo50 feasibility study.

UKCTOCS, a population screening trial, sent invitations to over 1.2 million women and is one of the largest RCTs, randomising to control, CA125 + ultrasound, and ultrasound alone.  With 13 centres and large numbers it was necessary to ensure a highly streamlined process and this was indeed one of the features of this trial.  Follow up was aided by having the NHS numbers of the participants.  Sensitivity and specificity was encouraging but the key issue will be impact on ovarian cancer mortality.  Results from this trial will be available next month and the event will be live-streamed.  Details will be on the trial web site; a search for UKCTOCS will get you there.

The other screening study was UKFOCSS, which offered the multi-modal screening option at 4 monthly intervals (for the CA125 testing, with annual ultrasound unless CA125 results indicated earlier) to high risk women. The intensity resulted in quite a few recalls with a certain amount of distress for those recalled, but overall this didn't appear to affect anxiety or reassurance.  Once again, high sensitivity and specificity was a feature but the results for this trial are not yet available.

Usha Menon finished her presentation with thanks to those involved and made a point of first thanking the women who had taken part in these trials. She showed a photo of the card made for and sent to the women in UKFOCSS after their last study screening.

The image has been made from 5,737 dots, one dot for each woman in UKFOCSS, and is inspired by the microscopic view of a healthy ovary.  Inside it carries a message of thanks - mine is still on display in my house.

Janet Dunn's paper presented the results of the feasibility study for the Mammo50 trial.  This trial investigates follow up in breast cancer patients aged over 50 at diagnosis.  It looks at annual or 2 yearly mammograms for those who had breast conserving surgery and 3 yearly for those who had a mastectomy from the 3 year post surgery mark.

The feasibility study used focus groups in addition to the QoL and PROMs questionnaires.  The focus groups also looked at perceptions of the trial.  The study concluded that it was an acceptable trial both to patients and clinical teams.  It showed that at the 3 year post surgery mark around 29% of patients were reporting distress, primarily in fatigue, lack of sleep, memory issues and itchy/dry skin.

This is going to be an extremely interesting trial.

The conference finished at lunchtime on Wednesday but I stayed on for a meeting of the Clinical and Translational Radiotherapy Research working group (CTRad).  I'm not actually on this working group but they had several places for interested consumers and I was fortunate enough to get one.

After that it was back to the hotel to pick up luggage and have a drink with a couple of colleagues as we mulled over the conference before heading to the station and the train home.

My final conference post will highlight some of the posters I found particularly interesting, but that is for another day ...

Monday, 16 November 2015

Photons, Protons, Red Wine and Aspirin

No early start for me on the Tuesday of the conference.  My first session was the 09.40hrs Technical Developments in Radiotherapy, a highly accessible plenary lecture by physicist Uwe Oelfke.  A highly skilled speaker, he led us through advances and opportunities in planning radiotherapy and the advantages and drawbacks of, and differences between, the various options for delivering radiotherapy.  He also discussed the possibility of integrating MRI to fine tune delivery and enable real time adapted radiotherapy.

For me, the other outstanding session of the day was Prevention is Better than Cure, hosted by Jack Cuzick.  The opening paper from Andrew Chan reviewed the role of aspirin and pointed out that the reason why it takes 6 - 10 years to see benefit is probably down to the length of time it takes for cancer to develop and aspirin appears to reduce the risk of precursor adenomas.

Sam Behjati then presented the findings of a small study that looked at 4 different types of radiation-associated second malignancies.  In spite of genomic diversity between these, the study found a couple of mutation signatures in common irrespective of tumour type, namely excess numbers of balanced inversions and of deletions.  Looking to the future, he posed the question - can these features be used as biomarkers?

From there we went to a consideration of resveratrol (found in berries and in grape skins, hence the reference to red wine).  However, the studies concerned used it in concentrations much higher than those occurring naturally.  Then it was on to a trial of interventions to improve the take-up of cervical screening in young women.  Something I found interesting (but not particularly surprising) was that the only intervention to show even a slight increase in uptake was a limited offer of online appointment booking.  However, overall the trial showed that no intervention showed a significant increase in uptake and, in general, women went for screening when they got round to it.

The session was concluded by Jack Cuzick speaking about benefits and harms.  Considering aspirin, a straw poll of delegates in the session suggested a significant number were taking aspirin (presumably many self-medicating) in spite of the potential side effects.  Trials which have reported using SERMs and AIs in breast cancer prevention show benefits for both, although both carry side effects.

The issue of side effects makes it useful to stratify the population and offer chemoprevention to those most likely to benefit.  In the case of aspirin, this can be tricky because benefits can be seen for a range of cancers, further complicated by the population wanting to look at all cancers when considering risk/benefit.  For the endocrine therapies, the target group is more easily identified.  One suggestion was that screening appointments could be a window in which to provide people with information on prevention options.

I would have liked to have attended the 18.00hrs clinical trials showcase followed by the 'Rethinking Cancer' plenary, but it had been a very full day, including poster viewing and an important lunchtime workshop on involving patients in the use of their data - more of which in a future post.  Reluctantly I decided that, with an evening event to follow, I'd better go back to my room and put my feet up for a while.

After that, it was some important socialising.  After all, networking is an important element of the conference and what better way to do that than over a good dinner and a bit of a dance?!

Thursday, 12 November 2015

Conference Monday

It has been rather a busy week, but at last I'm getting round to updating on last week's NCRI cancer conference!

My Conference Monday started with a workshop giving an update on the Genomics England 100, 000 genome project and associated work.  One of the important messages was the need for the pathology methods which support tissue collection and Louise Jones presented the pilot work in delivering the necessary protocols.  This is clearly a challenging area but clear progress is being made.  Many of the GeCIP leads were on the workshop panel and spoke of the progress and challenges in their areas.  An interesting question posed was 'what if the pathology goes on to suggest treatment that is not in the guidelines?'  All in all it was an exciting start to the day, with many issues still to be resolved.

It was a busy day, with some interesting plenaries in addition to the symposia and parallel sessions.  I spent quite a bit of it in sessions looking at risk, screening and early diagnosis in various cancers but particularly ovarian. In the morning I was at Molecular Testing for Early Cancer Diagnosis and in the afternoon it was Screening and Epidemiology of Ovarian Cancer.

In the morning Marc Tischkowitz reviewed lessons from the GTEOC (genetic testing in epithelial ovarian cancer) study, which recruited women newly diagnosed with epithelial ovarian cancer for BRCA 1/2 testing.  With cheaper and faster testing now available, there are issues around who should be offered testing and what support and counselling should be given.  Traditionally in the UK, genetic testing for hereditary cancers has been available to a fairly limited pool of people and only with genetic counselling and support (sometimes quite extensive).   If the numbers being testing increase considerably, the genetic counselling services will be overwhelmed.  In the GTEOC study the mean age of the participants at diagnosis was 65, with a 7% mutation yield.  However that 7% was not spread evenly throughout the age range, with those under 70 years (not exactly surprisingly) being much more likely to carry a mutation than those 70 and over.  The  pyschosocial arm of the study suggested that a lack of intensive genetic counselling prior to testing was not detrimental and suggests that wider testing at around the time of diagnosis would be acceptable, especially given that the current family history criteria will always miss people in whom mutations would be found if this whole group of newly diagnosed women was offered testing.

This presentation was followed by Peter Sasieni, looking at molecular biomarkers.  As well as the biomarker considerations, he raised some interesting issues for risk testing at a whole population level, pointing out that identifying those at high risk did not equal early diagnosis.   Moreover, identifying genetic predispositions could label millions of people (with attendant difficulties) while not offering intervention to most of those who will actually develop cancer. In addition, there is always a risk that knowledge of low risk could encourage risky behaviours!  For those of us who see risk and screening through the prism of a cancer diagnosis, this was a timely reminder of the general population situation.

Moving onto the afternoon parallel session I attended, three papers particularly struck me.  The first was  by Ranjit Manchanda looking at population based screening.  The pollution concerned in this study was the Ashkenazi-Jewish population comparing population screening for founder mutations with the traditional family history based method.  Included in this study was the use of a dvd based approach to delivering information about risk and counselling.  This method proved to be both acceptable and non-inferior and was supported by telephone counselling for high risk women.  It was concluded that modern methods mean  population stratification and panel testing is both acceptable and cost-effective.

The next paper was by Kezia Gaitskell and considered the association of child bearing patterns and ovarian cancer, concluding that histological type made a considerable difference.  When there was an association, childbearing conferred an overall 26% lower risk in those women in the study, with each birth lowering risk.  This study used data from the Million Women Study.

Valerie Beral then looked at factors that might raise or reduce risk of ovarian cancer, using data from around 50 studies and 25, 000 cases.  Perhaps the most striking was her conclusion that 15 years of use of the oral contraceptive pill halves the risk of ovarian cancer and that this benefit persists.  Use of HRT raises the risk of ovarian cancer  as well as breast cancer but, at least in the case of ovarian, that risk does not persist at the same level after use has stopped.

After that, it was off to a meeting relating to another study and then the Consumer Forum meeting, before a dinner to celebrate a couple of birthdays.

A Very Full Day!   

Thursday, 5 November 2015

Scene Setting

I am just back from the 2015 NCRI Cancer Conference. It runs from Sunday afternoon until the Wednesday lunchtime, with a number of groups then using the Wednesday afternoon for meetings.

The conference itself is a series of plenary lectures, parallel sessions, workshops and activities plus a trade, academic and charity exhibition and poster display.  A very full few days.  Usually there are discernible themes plus an opportunity to follow your own theme.

This year we were also celebrating the life and work while at the same time mourning the loss of an important figure in UK cancer and health research, namely Professor Jane Wardle, who was a leading health psychologist. She died a couple of weeks ago from complications related to chronic lymphocytic leukaemia.  A tribute to her can be found on the CRUK web site:

Much, but by no means all, of Jane Wardle's research related to the field of early detection of cancer, which was one of the themes of this year's conference.  But perhaps what I most admire her for is her honesty in her approach to what one of my own cancer friends describes as this "cancer malarky".  Jane Wardle has explained that when she showed distress it didn't mean that she needed solutions or to be cheered up; she was wanting sympathy. When she expressed anger about what had happened, she didn't want to be told to be optimistic, she wanted acknowledgement of her feelings and expressions of support.

Many of the sessions were dedicated to her or made reference to her.  Over the next couple of weeks I will post about various sessions and posters of this year's conference, but I too wish to start by acknowledging a huge debt of gratitude to Jane Wardle.

Thursday, 29 October 2015


It was 7 years ago today that I was told that almost certainly I had breast cancer and it was expected that the pathology results would confirm this. Exactly one week later they did. And life hasn't been quite the same since.

I remember reading someone who said that it feel that life breaks into a million pieces and when you put them back together again they don't quite fit together in exactly the same way (I've paraphrased that, I think, but that was the gist of it!).  And that is just it.  Life is back together and life is good, but it is just, well, somehow different.

As I enter my season of anniversaries and appointments I will be glad to put the triteness of Pink October behind me and move into November.  Not that October has been all that pink for me as I've managed to avoid it in "real" life, but I will be glad to get back to a more sensible twitter feed.  I have been a bit saddened that a charity of whom I'd thought better has put out such a constant stream of pink trivia.

It has been a lovely golden autumn where I live with a good many sunny days and today's drive to work through the falling golden leaves and tunnels made from yellow trees was absolutely beautiful.  Add to that an airshow or two, some walking and a freezer full of sloes, and October has been pretty good!

Early November brings the NCRI Cancer Conference and with it the positivity of seeing the cancer research community coming together, presenting their research and seeking opportunities. The real work of looking for prevention of and treatment for cancers.

So as I head towards November, I'll bring October to a close with my product nomination - the Pink Scratch card.

Wednesday, 21 October 2015

Twit, Twit-er, Twit-est

I really should stay away from social media in October …

Generally I love Twitter for the roundup of short snippets it provides ranging across my interests.  Unfortunately once October comes, my Twitter feed is full of pink trivia and photos of people doing ridiculous things, wearing silly costumes and selling rather odd merchandise.  The excuse is "raising awareness" of or fundraising for breast cancer but in reality so much of it trivialises and minimises. Moreover it contributes to division in the cancer community when one group of cancers hogs the limelight.

It isn't helped by the fact that some of the accounts posting or re-posting these can be found posting useful stuff too.

In the last couple of days there have been pink chocolates, alcohol and shoelaces, scratch cards and invitations to text details of pink landmarks; not to mention the photos of people in Very Peculiar Clothing grinning inanely.

Of course, even in October Twitter is a mine of useful information and signposts to interesting events and articles.  Hidden away are things I really wouldn't want to miss from the cancer research and public involvement communities, as well as those completely unconnected with health issues, but I have to work so much harder to find the good stuff.

So here is a photograph of the real colours of October:

Friday, 2 October 2015

October comes round again

It is October; that time of the year when otherwise sensible people seem to think that buying a pink coloured screwdriver promotes breast cancer awareness or somehow will decrease the number of women and men who die from the disease.  It is a time when retailers, some acting in good faith, promote their pink branded merchandise and may even employ slogans that might suggest people are delighted when they, their family and friends receive a breast cancer diagnosis.

As usual I am on the lookout for this year's most tacky or most inappropriate Pink Product, so if you see a contender do post a comment below!

Most readers will know my feelings on the whole Shrieking Pink Silliness, so here I will point towards a few old and new views from other bloggers. My own views can be found in previous October and November posts here in this blog.

Please  -  Think Before You Pink.  If possible, do what you can to be practically supportive to someone you know who is living with or with and beyond cancer - any cancer, not just breast cancer.  Do what you can to support (not necessarily financially) cancer research.

Those of us living here in the Land of New Normal generally love to have fun and to live life to the full but this October, please remember that no cancer is all a pink picnic or a pink wigged giggle and all too many of those diagnosed with breast cancer and other cancers will live or die with or from serious consequences of the disease.

Above all, know the signs, be clear on cancer and have worrying symptoms checked.  Because buying that pink screwdriver will not protect you from breast, or any other, cancer.

Sunday, 15 February 2015

Empowerment and Sustainability: a win/win situation

This last week in the BMJ I read an article by Eaton, Roberts and Turner about delivering person-centred care to people with long term conditions  ( . The article made excellent points, but it is rather an indictment that there is a need for such an article when this approach should be commonplace.  

The article covers both sustainability and engagement issues; pointing out that with so many people living with long term conditions (LTCs), sustainability of services and higher public and patient expectations call for an urgent re-design of services. The authors acknowledged that those living with LTCs spend a small fraction of their time with their clinicians and much of their time managing their conditions themselves. Furthermore, those who are managing effectively generally have better outcomes.

So why doesn't it happen?  The authors of this article refer to an evaluation of a failed attempt to introduce such a change in the UK, suggesting that support for self management was seen as irrelevant due, inter alia, to a failure to implement cultural change and the fact that it was not supported by guidelines or commissioning arrangements.

An extremely good illustration of one of the benefits of a change in approach is given by the authors, referring to National Voices work on support planning.  They point out that most people would not feel comfortable going into an important meeting and being asked to make snap decisions without prior preparation and yet this is generally what happens in the healthcare setting.  Instead, they suggest that greater participation could be achieved by giving people test results in advance and prompting them to list what they'd like to discuss.

This seems eminently sensible to me. Bizarrely, I had to push hard to be sent my genetic testing results in advance of the consultation to discuss them in order to prepare my questions, while (in order to save clinic time) I had been given my confirmed diagnosis hurriedly over the phone with a date for an appointment just over a week later. Knowing the genetic test result in advance meant that I was able to concentrate on what I wanted to know given the actual outcome rather than having to think of questions for all possibilities.

Many hospitals in England (but ironically, not mine!) are in fact moving to a more self-directed follow up model for breast cancer patients and this is also true in many places for diabetics, but generally there is still a long way to go before we have an overall person centred approach to the care of those living with LTCs.  I can't help but feel that it is incumbent on those of us already fully engaged in managing our care and treatment to encourage and support our own clinicians in taking this approach, particularly when this may not be easy for them.  

It was precisely this approach, with both me and my clinician fully engaged, that made my annual appointment such a positive experience a few months ago.