Shouldn't I be Somewhere???

I haven't been to hospital for two weeks and it feels very odd indeed.

For most of the past eight months I have had at least one appointment most weeks and sometimes several in a two week period.  At times I felt I was living there!

I'm quite grateful to be there less frequently but I can understand why some people feel bereft at the end of active treatment.  You have a whole team of people lavishing care and attention on you; working to give you a good outcome. Then, as suddenly as it all started, they are gone and for a while you are on your own.  I'm quite enjoying it, but it still strange not to be dashing off there.

I wrote previously that cancer treatment can feel rather like a full time job and certainly it takes up rather a lot of time.  I am fortunate in that I have a job which is mainly (though by no means exclusively) office based and that my employer and colleagues have been supportive.  I have been able to work throughout, save for two weeks after surgery and the time to attend hospital appointments.  I have answered emails and done paperwork from odd corners around the hospital, worked from home and used one of our offices that is more local to my home than my own office.

As a result I feel that I simply transition between working on treatment and working at the everyday job.  Now that is helping me move out of treatment and into everyday life while finding yet another New Normal.

Having said all that, it still feels somewhat peculiar not to be leaving the office mid to late afternoon to get to radiotherapy!

A New Fixture?

Monday 15th to Tuesday 16th January saw the 1st UK Interdisciplinary Breast Cancer Symposium take place in Manchester, hosted by Breast Cancer Now.  It was a packed few days, consisting of a mixture of plenaries, keynotes and parallel sessions plus exhibition and posters.  The major problem was deciding which sessions to attend and finding time to see the posters!

It isn't easy to pick out highlights, but here are some of mine ...

Dr. Laura Esserman, in the first keynote, made a good case for the neo-adjuvant approach, seeing it as precision medicine at its best. Not only can this approach obtain valuable information for the individual patient in terms of what is or is not working, but it can shorten the time needed for trials to yield results. She raised the question of whether knowing the response might enable a de-escalation of therapy for a high response and/or low risk and escalate for low response/high risk.  And with the possibility of a shorter time to drug approval, could we make the case for lower pricing?

In the Metastatic Disease session, Professor Stephen Johnstone outlined situations in which there is a compelling reason for combination therapies, reviewing a number of recent trials.

Perhaps not surprisingly, given recent events (!), I found the Triple Negative Breast Cancer session particularly interesting.  Professor Andrew Tutt delivered a packed talk on the biology of new targets and Dr Chuck Perou followed on with precision medicine using a systems biology approach, teasing out the different types of TNBC. Jelmar Quist then drilled down to the specifics of HORMAD 1 expression.

Monday's final keynote on understanding risk was delivered by David Spiegelhalter. As always, he spoke powerfully and entertainingly.  Media coverage, exaggerated claims and negative framing - not to mention the drive for certainty - all cause problems as we attempt to understand and communicate risk.  So what should we do? We need to justify what we claim, use absolutes rather than relatives and put things in perspective.  Engage, take responsibility and present properly!

After which it was off to mingle, aided by wine and posters!

Tuesday opened with an excellent keynote from Professor Jack Cuzick on breast cancer prevention in the population at large, both the simple and the more complex options.  Avoiding tobacco, controlling weight and being physically active were, of course, all at the top of the list. While low dose aspirin has  smaller preventative effect for Brest cancer the some other cancers, it might still be important (hence the current trial). And while alcohol is less of an issue than many people think, it is still an issue.  For the high risk population there are chemo-prevention options.

That lead neatly to the session on Managing and Measuring Breast Cancer Risk. Professor Fiona Gilbert spoke about the need to consider different screening methods and re-think screening strategy. Professor Gareth Evans then picked up on stratified screening, taking us through the PROCAS 1 study. The issue continues to be finding and treating the ER -ve, Grade 3 and Triple Negative cancers...  Professor Anthony Swerdlow presented some findings from the Generations Study and Zoe Kemp concluded the session by discussing genetic risk and testing. Interestingly she said that when testing criteria were broaden in a study, 50% of those found to have  mutation did not meet the testing threshold of either Manchester or BOADICEA. Definitely food for thought there.

In the afternoon I attended the session by David Spiegelhalter and Lesley Fallowfield on communicating risk. They pointed out that there is often a lay assumption that more treatment is better and that the harms and risks are less likely to be considered. This is not helped by low levels of numeracy and high levels of statistical illiteracy - and not just in the lay population!

I concluded with the Challenges of Local Management, which included the situation of an occult primary and positive lymph nodes. The final paper was delivered by Dr Charlotte Coles on current and future indications for partial breast radiation. With all the trials to consider, this looks to be an important step. As someone who has just experienced the advances in radiotherapy over the last nine years, I look forward to this as an option for some women in the not too distant future.  Which brings us back to the realisation that more treatment is not always the better option.

Overall an encouraging Symposium which pointed to the fact that we have much still to do.


At a personal level, while it was tiring for me, I was delighted not only to have the energy and opportunity to attend this Symposium but to do so with both the patient advocates and the cancer professionals who have supported me over the past months.

Fugit inreparabile tempus

... as Virgil said in his Georgics, which I re-read when I stayed with my sister in November.

I haven't posted anything to the blog for some time. With treatment and everyday life and work, time just disappeared.

I finished chemotherapy and had my surgery in mid November.  Happily my sense of taste returned in time for Christmas! I am now having radiotherapy and have just a week now before that too is done.  Time both stands still and rushes past while in active treatment; it is an odd sensation. Both chemo and surgery went well and I'm making a good recovery from both.

Radiotherapy has come a long way in the last nine years. Although the basic principles are still the same, the equipment and delivery (and imaging) are more advanced. Planning was a much faster process.

Somehow it feels more comfortable this time around. In part this is, no doubt, because I know what to  expect but it is also true that in spite of much more extensive surgery to the axilla  (not to mention lymphoedema), it is a more physically comfortable set up than it was before.

This time around I am being treated in rooms with a mazed entry rather than a heavy shielded door and that is more pleasant. The space feels more open and airy and there isn't the clunk and slightly forbidding feeling of the door rolling into place and locking you in.

It is is, as always of course, helped by having a kind, thoughtful and informative treatment team; prepared to indulge my requests to take photos and answer my incessant questions.  In this I have been fortunate throughout my treatment.

Goodbye to Pink

As we leave October behind I am very thankful to see the back of the awful pinkness of people treating breast cancer as a big joke and an excuse for a giggle. Above is the real colour of October!

It amazes me that anyone could think that a campaign called 'tickled pink' could be anything other than misconceived and insulting at best. After all, what does the phrase mean? Would you say that you were ticked pink to be involved in a road traffic accident, or to have been made redundant? And if not, why on earth would you use the phrase in relation to cancer? 

Wear it pink might be fine if people were being encouraged to wear a pink ribbon or blouse, shirt, tie, wristband etc. for the day. Encouraging pink feather boas, wigs and huge cardboard spectacles while grinning inanely is rather a different matter.  Moreover, while breast cancer affects a large number of people and still kills far too many, there are so many other cancers also in need of research and awareness. 

I suspect that the reason for both the focus and the silliness is because we are back to the school boy behind the bike shed mentality of making anything to do with breasts a bit of a giggle.

And while I'm having a rant about insulting behaviour - I see from the news that Macmillan have appointed to a post designed to counteract some of the cancer myths and misinformation that circulate so freely. This, in theory at least, is an excellent idea. Indeed, many of the specialist cancer charities do issue press releases designed to refute some of the more widely circulating myths. However, if the report I read is accurate, the project seems to have got off to rather a bad start with the post holder making some sweeping and highly patronising remarks about the people she is supposed to be supporting.  

She is reported to have said “Once the doctor says 'cancer', people automatically then shut down and they don’t take in the information they are given ... and then they'll sit online that night and get themselves into a frenzy with what they're reading”. 

While this may well be true of some people, it certainly was not so for me on either diagnosis. Neither was it true for many (indeed most) of the cancer patients I know. Such a general statement about 'people' diagnosed with cancer is at best misguided and patronising and indeed is itself misinformation! It certainly does not engender confidence in the post holder. Moreover, the remarks were totally unnecessary in order to justify her project. All that was needed was a comment that in the digital age misinformation can spread rapidly and extensively until it can appear common knowledge until you look more closely.

Her words do fit the pattern of this charity's disempowering attitude to cancer patients. As someone who has worked in advocacy and empowerment for over 20 years I find this attitude both offensive and unacceptable. If a member of my team was making remarks like this about our clients, we would be having some very serious conversations. In practice, I am pleased to say that I have every confidence that no member of my team would make such remarks. 

Poetry on Prescription

Today is National Poetry Day in the U.K., and fortuitously it was also my regular 3 weekly chemo clinic appointment. The information display screen in the clinic included details of the hospital’s NPD activities so after my appointment I decided to take a look.

Postcards with poems printed on them were being given out at the main hospital entrance and inpatients were being given one of the cards with their lunch trays. There was a display of the poems, selected by what I assume was the event’s organising group, up on the wall outside the main entrance and arcs of excerpts from poems written on the pavement. Although I missed it, there was a poetry reading session over part of the lunch period.

Perhaps the biggest draw for those who had the time was the Emergency Poet, who would prescribe you a few poems. Totally irresistible as far as I was concerned! She was based in an old ambulance, which was interesting in its own right and still retained some of its historic fittings but also had poetry-related additions. Her ‘patients’ (a mix of the hospital’s staff, students, patients and visitors) sat on one of the stretchers with their feet up, while she sat on the opposite one. She then asked questions about your lifestyle, likes and dislikes, how you relaxed, your favourite books, and indeed, whether you usually read poetry. Nothing particularly intrusive and quite cleverly crafted questions so that you could say as much or as little as you chose. 

Based on your answers she selected some poems for you from her file of poems and wrote you a ‘prescription’ of how and where to read them. There was something rather special about coming away with a selection of poems chosen specifically for you.

As I walked to the bus stop with my prescribed anti-emetics for Monday and my prescribed poems sitting side by side in my bag, I was reminded that for many people, of whom I am one, there is an important role for the arts (poetry, visual art, music, dance …) as you go through treatment.

October looms

We’re not half way into September yet and already social media is filling with images of people with silly pink outfits and accessories grinning inanely and reducing to a joke a disease that still kills far too many women and men. 

The argument is that this somehow raises awareness. However, in reality the people who see these images are already well aware. Those in the hard to reach groups, where awareness is still needed, are rather unlikely to see them or to relate them to cancer awareness.

I’m sure that it does support opportunistic fundraising. But at what cost? If we trivialize what is a serious disease we do ourselves and the public at large no favours in the long run. The message becomes lost in the process. Some would argue that the end (fundraising) justifies the means, but that is not a position with which I am comfortable. I have no argument with the calmer statements; the fountain that runs pink during October with signage explaining why, a coffee morning/evening/fundraising event with information. It is the semi-hysterical pinked shrieking that I find so offensive.

You can still have fun while fundraising without turning things into an offensive circus. While I am no fan of Macmillan as an organisation, their World’s Biggest Coffee Morning events are usually enjoyable without trivialising cancer. The HIV community have, from the outset of their awareness and fundraising campaigns, managed to hold events that are both highly successful and thoroughly enjoyable.

Is it because we find breasts a bit embarrassing but not as unmentionable as bowels? A bit of a schoolboy giggle? The Page 3 mentality?

It is 25 years this year since Estée Lauder started their Campaign and co-founded the pink ribbon to raise awareness and funding for research. Time for the rest of us to grow up and leave the embarrassed schoolboy attitude behind the bike sheds.

Treatment as Orienteering

Navigating the way through treatment follows a similar course to taking part in an orienteering event. You may have registered in advance by way of diagnostic imaging and pathology, but then the day comes when you receive the official diagnosis and, with your hospital number as good as pinned to your front, you’re headed towards the start line and into the forest.

The first consultation is where you receive your map in the form of the proposed treatment plan, showing the various checkpoints. In my case: joining trial and study, port operation, Neo-adjuvant chemo part 1, mid way imaging and tissue samples, chemo part 2, surgery, radiotherapy, and the ‘finishing point’ of a post treatment appointment. These have to be visited in the correct order and the straight line between each is unlikely to be the actual route taken. You work out the likely routes but know it has to remain a bit flexible. You’ve got your compass and if all else fails and you have an emergency you have your whistle in the form of the 24 hour emergency phone line number.

The various members of the team provide the control descriptions by way of discussions on what to expect. These checkpoints are manned (usually womaned) by oncologists, surgeon, breast care nurse, chemo nurses, clinic staff, etc. All sorts of obstacles are apparent from the map, so deviations from a straight line route will have to be made. 

While you do keep your eye on the whole map and the ‘finish’ (not that there is a real finish here, just an appointment at the end of this acute treatment phase), what really matters is the constant checking of the route you’re currently on to the next checkpoint. Which path will be the easiest? What are the possible obstacles and how will you get around them? There will be small waypoints on the routes between checkpoints (medications to take, blood tests, clinic appointments and questionnaires). What are the actual obstacles and how do you tackle them? What techniques will you use?

You see other runners, some on the same course, others on different ones. Some are on the professionals’ course, as they run trials and studies and they develop new services and ways of doing things. You may meet them at shared checkpoints. As this is a friendly event rather than a major international competition, most runners will make time to exchange words and smiles but all are intent on getting round the course. 

You follow and cross paths, fences, streams as you move along the course. Sometimes you become over-ambitious; that gate vault really wasn't wise!

Gradually, you mark off your arrival at each checkpoint with your electronic dibber. Eventually you will arrive at the finish point of the post treatment appointment, after which you make your weary way home. Hopefully there will have been friends, family, fellow runners and professionals there to cheer your arrival in the finish pen.

Of course, it can also be looked upon in terms of a board game - miss 2 turns as you wait for blood to be taken. Right at the moment I prefer the active imagery (while avoiding the fighting/battle stuff) but I have devised and used a board game in the past when trying to get across the patient ‘experience’ to a variety of professionals. It allows hard hitting points to blend with humour.

So here I am, moving through forest and across open ground, splashing through streams and     sliding under fences, performing the occasional unwise gate vault . Stopping occasionally to check the map, take a breath or admire the view. Dealing with obstacles and route changes but moving steadily round the course.

Targeted!

Back in December 2014, I had a bit of a rant against Macmillan’s attitude to people attending appointments on their own. I found it unacceptably patronising then and I still do. Unfortunately, they have built on this with advertising and fundraising campaigns and in their presence in hospitals. I can't help but feel that they now have a vested interest in portraying people with cancer as weak and unable to manage without the help of their charity.

The practical outworking of this is that I have now been targeted three times by pushy but needy volunteers who have noticed that I am in the clinic on my own. On one of these occasions I was actually quite deeply engrossed in reading and was still interrupted. They say they would like to speak to me, are quite persistent and seem incapable of taking even quite heavy hints that I don't want to speak to them. And they go on about ‘not facing cancer alone’. I assume they then toddle back to their admin area and record another person they have ‘helped’ in order to justify their funding.

Now, if these were paid employees I would have taken a very strong line at the outset. The difficulty is that not only are they volunteers, but they clearly have their own issues and at least one that I know of is volunteering following their own cancer treatment. They mean well and I suspect some of them are quite vulnerable. It would be easier if they could just take a hint but as they don't seem prepared to do that, I have decided that I now need to be blunt.

I have done my Good Deeds by letting these needy people speak to me but enough is enough. Next time I will be polite but will state outright that I don't wish to speak with them and I will let them know (also politely) why.

Hair today, gone tomorrow ...

While by no means all chemotherapy drugs cause hair loss, chemo for primary breast cancer usually includes those that do. It is something that many people find difficult and it is perhaps the most obvious outward sign that you are having treatment.

I’m not entirely sure how I feel about it. Having my long-for-30-years hair cut short was quite a shock to the system, but the very positive reaction I received to the new, if highly temporary, look was a pleasant surprise. Especially as it seemed absolutely genuine rather than because people were trying to be encouraging. Indeed, many people who commented didn't know the reason why I had had it cut. So for a week or so I enjoyed my new look, until the look started changing on a daily basis as more and more hair falls out.

Apart from the nuisance value, I began to consider how other people might perceive me if it was obvious that I was having chemotherapy. At that point I began to get concerned that the promised wig appointment had not materialized, in spite of following up. Chatter in the chemo unit showed similar concerns were common. For almost all of us, it wasn't the regular contact with family, close friends and colleagues that was the issue. Almost everyone was okay with scarves, hats or nothing for that. What was a common cause for concern was attending big social events or business meetings at which ones status as a chemo patient became obvious. I realised that, at least for me, it was about not wanting to be defined by what is happening to me. Not wanting to have people make assumptions about what I can and can't do professionally based on appearance.

So not a moment too soon, I finally had my wig fitting appointment. Some looked awful and some looked very odd indeed but eventually, with a helpful second opinion from a friend who took quick photos of me in the eventual shortlist of two, I found something I think I can live with. 

How much I wear it will remain to be seen and, following conversations with a couple of friends, I am considering getting another one in a different style as an alternative. However, simply having it to hand has made me feel more comfortable with the fact of hair loss.

... but I've already got a job!

As many people with serious illnesses or long term conditions know, they can all too easily turn into a full time occupation. This is particularly so in the immediate aftermath of a cancer (or indeed any other) diagnosis and then at key points during treatment. You feel that you might as well be living at the hospital and in spite of how grateful you feel that things are moving fast to give you a good outcome, it is all too easy to resent the intrusion into what had been your everyday life. 

In my case, this is now somewhat mitigated by my hospital’s excellent computer system that allows anyone working with me to see my appointments at a glance, and indeed track me through the hospital. The recent upshot of this was that after having made an appointment to see me, my breast care nurse then saw that I was due to be at the hospital for a half day procedure with several lengthy waits between appointments. So she called me and arranged that we would meet while I was in the waiting periods. The combination of good staff and supportive tech can make a tremendous difference to patient care and it is good to feel that my time is viewed as valuable.

I’m hoping to sign up to MyChart, which works with the system to enable you to see test results, appointments, etc. 

Of course, it doesn't always fit together so well (the set up admin for MyChart is a bit of an issue), so it still feels like a second full time job at the moment…

Here We Go Again

Here We Go Again

One aspect of life in the land of New Normal is that every now and then, however good your prognosis, the mind turns to the possibility of a recurrence. It is also a fact that having been diagnosed with one cancer increases the probability of being diagnosed with another. 

In the case of breast cancer that includes a contralateral breast cancer with the possibility of completely different pathology - an entirely new cancer. That is just what has happened to me.  The whole process has been very rapid and I now find myself having started chemotherapy; in one clinical trial with sub studies for a drug not routinely given in the early breast cancer setting, and in another very new genomics study.

I’m not being treated at my local hospital this time. This is a less straightforward cancer so I thought I might do better to travel just a bit further to a hospital known for participating in, and indeed the initiation of, cancer research including breast cancer research. It is also a hospital I know well through my patient advocacy work and they are early adopters when new findings are published. It is a very personal decision for which I have weighed up feeling comfortable at this particular breast unit with the additional travel.

Again this time around I have turned to journaling as one of my coping strategies. Blogging is a form of journaling and I hope to maintain this blog throughout my treatment and beyond, also working in my continuing work to bring the patient voice into cancer research. However, I do have to be honest and say that much of my innermost thoughts will not make it into the public domain in the interests of myself and others. While I fully embrace the digital age and thoroughly enjoy using this medium, I still value my privacy enough to take on board the basic rules I learnt when starting to use email and social media 

1. Never put in an email/message something you wouldn't be happy to send on a postcard.
2. Never put on social media something you wouldn't be happy to put on the village notice board.
3. Never fool yourself into thinking you can keep anything you do put out there private.
4. There is a lot more to confidentiality than just not using someone’s name.

Reflective Monday

Monday at the NCRI Conference got off to a good start when I attended the plenary lecture by Cheng-Har Yip from Malaysia on the subject 'Challenges in the management of breast cancer in low and middle income countries'.  So much of the conference is about high tech solutions which are not always available in low and middle income countries so it was good to have this reminder.  We heard about challenges at all stages from late presentation because of fatalism and a preference for trying alternative therapies first, though lack of access to reliable pathology and onto low access to radiotherapy.  Some countries have a multitude of languages so patients may face a language barrier on top of problems such as distance and the cost of treatment.  The importance of a multidisciplinary approach was stressed along with collaboration between the high income countries and the LMICs.  It was very encouraging to hear the stress the speaker put on listening to what women say that they want.

This last point also came up in another excellent Monday plenary, namely Stan Kaye giving his Lifetime Achievement Award lecture on drug development and ovarian cancer.  He spoke about BRCA testing now becoming routine, the use of the PARP inhibitors and the management of recurrent disease. He also spoke about new targets, heterogeneity and the importance of listening to the patient.  One of his last points was 'never forget who you are treating.'

The Molecular Diagnostics workshop was a great opportunity to reflect on lessons learnt from several initiatives.  Louise Jones of Barts Cancer Institute reflected that the transformation of the NHS is a significant legacy of the 100,000 Genome project.

Monday evening saw the traditional Independent Cancer Patients' Voice lively meal in the local Pizza Express to which we invite a number of our friends an colleagues in the research and clinical practice community.

#NCRI2016

Back in Liverpool

It has been a very long time since I last posted here; it has been a busy year on many other fronts and blogging rather slipped.  But November is NCRI Conference month and I was there again this year for 3 days of cancer conference, exhibition, posters and networking.  As usual, I will split this into bite-sized pieces as this makes it easier to write up!

For the last few years the conference has had a smart phone/tablet app.  It has been a bit of a novelty in the past but this year I found it extremely useful.  There is still room for improvement, but this year's new feature of being able to write notes of sessions straight into the session details was invaluable. It also supported online voting in the sessions where this was relevant and the ability to send questions to the session chair while the presentations were ongoing.  You could message other delegates - provided they were using the app, of course - and see floor plans and maps of the session room locations.

My journey up to Liverpool was not smooth.  I had to travel via London and my first train was delayed, the one before had been cancelled, it was half the stated length and Arsenal were playing at home.  On top of which, work on the track meant the train had to take the long route round and in spite of having 45 mins between trains I began to think I was going to miss my connection. Happily, I didn't and after that the journey improved no end.

The first and last days are half days, with two full ones between.

Sunday's highlight was the debate "New Tricks for Old Drugs", hosted by the charity Breast Cancer Now and chaired by Judith Bliss.  The motion was "This house believes research into repurposing existing medications and optimising use of current breast cancer treatments should be prioritised above research into developing novel agents".  Speaking for the motion were Robert Coleman and David Dodwell, while Paul Workman and Susan Galbraith spoke against.  A poll (with online voting!) at the start showed a large number of people declaring themselves as undecided, so the speakers had all to play for!

Rob Coleman started out with the bold statement that drug discovery was broke and not delivering for patients. He pointed out that while there had been a decline in mortality since 1990, this had now plateaued.  There have been no new adjuvant therapy drug approvals in the early setting for 10 years and new drugs for metastatic disease are not getting NICE approval. He could see no likely change in this position so money was being spent with little patient benefit and this was becoming unsustainably expensive.  He made the point that breast cancer is in practice a large family of rare diseases. Therefore drug repurposing deserves investigation and he cited the position in regard to bisphosphonates in this respect.

Paul Workman then spoke to make the point that while drug discovery is difficult, timescales are shortening and even with repurposing, discovery is still essential. He gave examples of rapid repurposing coming hot on the heels of discovery. There is still a mass of targets for investigation and drug discovery is vital in the field of overcoming drug resistance.

David Dodwell said that we need to do better with what we already have. He spoke about extended endocrine therapy, compliance issues and variations in practice.

Susan Galbraith started out by reminding us that while improvements start in the metastatic setting, the greatest effect is seen later when drugs move to early stage. This means that RCTs can underestimate benefit. She pointed out that UK spending on healthcare, and within that on cancer drugs, is lower than in much of the rest of Europe and that we could choose to spend more.

The questions from the floor pointed out that we need both repurposing and discovery. It also drew out that there are issues other than efficacy to consider, such as tolerability and that there are fewer unknowns with existing drugs.

I was a bit surprised that the proposers of the motion didn't make the point that they weren't suggesting repurposing instead of discovery but that, at least for a while, repurposing should take priority.  All in all it was serious but fun and conducted with great good humour.

In the final vote the motion was narrowly defeated but could claim the victory of having converted a greater proportion of the undecideds to their view. After which it was time to go down to the exhibition area for a glass of wine and chat with some of the exhibitors.

#NCRI2016  #ncribcdeb

European Commission Initiative on Breast Cancer

Back in early December I attended the plenary of the European Commission Initiative on Breast Cancer held in the beautiful setting of Baveno on the shores of Lake Maggiore.  Throughout the meeting there was plenty of opportunity at the breaks for networking.

Following the welcome, a series of speakers set out the project's current position in relation to developing a Europe-wide quality assurance scheme, guidelines for screening and diagnosis and a platform for further guidelines to cover care from screening to end of life.  The initiative has wider implications as it will be able to be used as a template for similar projects in relation to other cancers and diseases.

Pathology issues played a strong part on the first day, stressing that pathology is about so much more than testing (important though that is).

After watching a beautiful sunrise over the lake from the balcony of my room and fortified by an excellent Italian breakfast, I approached Day 2 in eager anticipation.  For me the highlight of the morning was the series of country profiles in which speakers from Hungary, Malta and Norway gave a fascinating insight into three very different sets of issues, challenges and solutions.  Long travel distances are a problem in some parts of Hungary.  That is not a problem in Malta, with its small landmass, but low numbers make clinical trials difficult there.  Norway appears to have high rates of interval cancers because all are captured, and informed consent in data collection has been a problem there.

The afternoon consisted of a choice of parallel workshops followed by a guided poster tour.  I could quite happily have attended any one of the 4 workshops, but eventually chose Communication in Person-centred Services.  This workshop involved presentations from 3 speakers and a good deal of participant participation.  It came up with some catchy images, parallels and metaphors, to which I will return later.

The conference dinner was excellent and provided a good opportunity for more informal networking.

The last day started with a keynote looking at evidence from qualitative research in guideline development.  This included asking 3 questions of proposals:
          Is it effective and safe?
          Is it acceptable to patients and others?
          Is it feasible to implement?

After the keynote each workshop fed back on they sessions, which was an excellent opportunity to catch up on the other options I'd rather have liked to attend.  I was particularly interested in the 'Volumes' workshop.  There is some evidence for a volume effect, but not as much as in complex surgery.  And should it be the surgeon or the hospital/unit volume?  In their feedback, the group posed the question - what do patients feel about volume?  My answer to that was - for anything complex, I really don't want to be operated on by the chap who was once known to do the procedure with the textbook propped open before him.  I want it done by the woman who can do it in her sleep, regardless of how far I have to travel for that - provided that she isn't actually asleep at the time, of course!  For something more straightforward, generic experience is probably fine.

The closing presentations included one on equity of access to screening; one of methodological standards for guidelines; and my own presentation on involving patients and the public in the difficult decisions using the over diagnosis/over treatment issue for illustration.

An interesting question was posed in relation to personalised screening, taking personalised medicine to the pre-diagnosis stage.

The issue of palliative care and the need for this to be included was raised several times; years to live, not years to suffer.  Another point that came up several times was the need for whatever is agreed to be attainable by all and not just the richer European countries.

I said before that the Workshop came up with some good images and metaphors.  Several of these resonated with me, including the following:

Luzia Travado presented on psychosocial support and used the analogy that diagnosis takes you to a new country for which you don't have the map and don't know the language.  I can relate to that and was fortunate enough to find both map and phrase book, but not everyone does manage to find those vital tools.

Kathi in her presentation suggested that patients practice telling their narrative in 75 words to support quick, easy and efficient communication of the vital issues.  She also spoke about the internet as being the blockbuster drug in patient engagement in their healthcare.  This, of course, does raise the question of how engagement can be achieved for those without (for whatever reason) good internet access.  Kathi also referred to the e-patient - Empowered, Engaged, Equipped and Enabled.

It was an excellent meeting; realistic but optimistic.  The patient voice was welcomed throughout the plenary; Susan Knox of Europa Donna spoke in the welcoming session on patient expectations, the Communication workshop included the presentation from Kathi Apostolidis of the European Cancer Patient Coalition, and I presented in the last presentations.

It isn't an easy project, especially given the economic climate, but it is one that could deliver a good standard of care wherever you live in Europe.

Another Milestone

I'm afraid that posters and Baveno are a bit delayed; this is a personal post following a much longer than usual appointments season.

This week, exactly seven years after I first met my oncologist to discuss radiotherapy and endocrine medication, I have been discharged from follow up and will re-join the National Screening Programme.

It has been a slightly strained appointments season this year.  Following my annual mammogram in mid November I was due to receive the results at my follow up appointment three weeks later.  However, this appointment was cancelled by the hospital due to planned strike action by junior doctors.  The re-scheduled appointment was for five weeks after the mammogram and while happy to wait for the appointment I viewed it as an unacceptably long time to wait for the results.  It was further complicated by the fact that I couldn't make the new date as I had a meeting I really did not want to miss and had spent the last eleven months working my diary around keeping the original date free.  Eventually I got another appointment, which was for eight weeks after the mammogram.

After something of a struggle I managed to get the results by phone from one of the unit's breast care nurses, who clearly did appreciate my point about the length of the wait.  However, I do find it worrying that she appeared to be in the minority and the unit as a whole didn't appear to acknowledge that leaving me waiting eight weeks for the results was not acceptable.

That aside, it was a good appointment and after I made my points I reviewed with my consultant my diagnosis, treatment and notes in addition to the usual examination.  All was fine and I'm now discharged, with thanks from me to him for his neat surgical work, his good wishes to me and a friendly handshake.

It feels a bit odd but strangely liberating.  For the last seven and a quarter years I have never been longer than a few weeks without being in possession of a hospital appointment letter or two and with the second Tuesday in December booked.

Obviously I'm not fool enough to think that this actually changes anything.  I'm fully aware that for ER+ breast cancer the risk of recurrence remains at 10, 15, 20, 25 etc. years after treatment and the "all clear" beloved by the tabloid press is a myth.  Side effects can linger and lymphoedema lurks, but follow up won't actually prevent any of that.  It is time for me to take over the responsibility for monitoring my own health.

I walked out of the hospital with a smile on my face, a feeling of satisfaction and the memory of the words spoken to me by an excellent oncology registrar when I finished radiotherapy, "You have done well."

At Christmas my brother gave me the CD 'The Race for Space' by Public Service Broadcasting.  One track is entitled "Go" and addresses the Apollo 11 lunar landing from the mission control side, featuring the Go/No Go calls of those responsible for various areas.  As I drove home from the hospital I listened to this, with the line "Surgeon - 'Go'" taking on a very personal meaning.

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.

#UKCTOCS

Ovarian Cancer Screening Trial results

A few weeks ago when blogging about the last day of #NCRI2015 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:  http://www.instituteforwomenshealth.ucl.ac.uk/womens-cancer/gcrc/ukctocs

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.

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.

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 ...

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?!