Monday, 27 January 2014

Why blog?

The recent controversy generated by the criticism by the Kellers of Lisa Adams and her use of social media has led me to pose myself the question "Why blog?".

Now this is a question to which there are a myriad of answers and those answers will vary from one person to another.  I can only answer for myself but I suspect that for many of us the answers fall into two streams; why we ourselves blog and why we are pleased that others do. Fo myself, both strands are part of an over-arching answer that includes belonging to a diverse online community.

As I have previously written, I have always used journalling when I have been facing challenges and changes in my life.  It is a process that helps me to clarify my thoughts, consider my options and choose my way forward.  Blogging is an offshoot of this process. I still journal, so why do I blog?

In part, this (somewhat sporadic!) blog is a place to share my thoughts and see what, if anything, this sparks off in other people.  That sits nicely with the clarifying and considering aspect of my journal.  Then there is that online community I mentioned above, sharing ideas, ideals and information.  And while my motivation is not altruistic, if anyone finds something I have written useful, then that is an added bonus.  Certainly I find that I learn from what other people have written.  Sometimes I find that in someone else's posts and comments a new light is thrown onto an issue I've been considering, at other times it is good to know others feel the same way I do.

What this blog is not, is a place for me to share my innermost thoughts.  That remains the function of my journal and I can't see that changing in the immediate future. It isn't in my nature to be public with things I consider to be highly personal and if I've important news to share (be that positive or negative) I am unlikely to share it here before I've told my nearest and dearest.

That doesn't mean that I don't think others should use blogging, or any other form of social media, in that way.  It is simply that it isn't for me.  Which brings me back to this diverse and generally supportive community to which we all belong. After all, if any of us don't like reading something, we can always stop reading ...

Saturday, 4 January 2014

New Year Thoughts

Happy New Year!

I have been meaning to post since before Christmas but all the busyness of the season ran away with me and the days slipped past.

On top of which, I had my annual check-up just before Christmas.  While I'm pleased to say that I am still in the happy position of there being No Evidence of Disease, I am feeling a bit ambivalent about the way it went.

It started really well, with the registrar who gave me the results of the mammograms the moment that the consulting room door was shut, saying that she didn't want me to worry a moment longer than necessary. This was Year 5 so I was expecting, provided that all was well, to be discharged back into the National Screening Programme and told 'goodbye, good luck, we hope not to see you again but you know where we are if you need us'; and I was excited and really looking forward to that moment. Partly this was because I could view it as a significant step and partly because I could do without the stress of imaging appointments, then a two week wait and the rest of the check-up just before Christmas. But no; I was told that hospital based follow-up would continue with annual mammograms and clinic appointments for 10 years. I'd even checked during the 'grope and poke' that I knew how to do an effective self-examination as I thought this would be a good chance to get my technique checked by someone who really knew what they were doing!

Now, I know full well that in real terms of recurrence the 5 year mark is not particularly significant, but then, especially with ER positive breast cancer, the risk of recurrence continues indefinitely. However I know too that studies show that follow up is actually not a particularly good way of detecting recurrence and gives no survival advantage, while the 5 year period usual in the UK (provided that there are no additional risk factors or ongoing complications) is a compromise as it is thought that women find clinic visits reassuring and this balances out the stresses it can cause. Based on that evidence, many breast units are now moving away from hospital based follow up (but with ongoing open access to the unit) after much less than 5 years for those people with no additional complicating factors, while continuing with the annual mammograms for 5 years or until the woman joins the Screening Programme.

I did raise the issue of continued endocrine therapy for another 2 to 5 years.  I had two years of tamoxifen and then switched to exemestane. Following the recent trials results the standard for tamoxifen is now 10 years and while there are no 10 year trials for the aromatase inhibitors, a discussion seemed in order. However, my oncologist wasn't in the clinic and it was clear that they were not expecting anyone to raise this (which I found slightly troubling!). They agreed to write him a Letter so that we could discuss this.

I found myself leaving the clinic unsettled and bitterly disappointed in spite of the initial elation of being told that the mammograms showed no changes from last year's ones.  The bitter disappointment has abated somewhat but I'm still unsettled about the fact that they are thinking that I should have a further 5 years of something that has been shown not to be efficacious, while not even discussing 2 to 5 years of something that could well be so.

Hence the ambivalence...


Sunday, 10 November 2013

More Conference Highlights

It was certainly a very full few days but not surprisingly, some sessions grabbed me more than others. So here is a little bit more about sessions that were, for me at least, the highlights. I'm sure other attendees would have a different list, but that is all part of a wide ranging programme.

With a subject matter as wide as cancer research it is inevitable that such a conference will have many strands. One such strand working its way through the conference was that of tumour heterogeneity. Nowhere was this complex subject more powerfully yet accessibly expressed than in the plenary lecture given by Charles Swanton.  Most solid tumours display considerable diversity and natural selection throughout their history. The lecture drew on the work of Richard Goldschmidt and Stephen Jay Gould to illustrate the complexities of chromosomal instability and genome doubling as macromutational events giving rise to large evolutionary leaps.

Heterogeneity, both inter and intra tumour, underlines the importance of researchers having access to good quality tissue samples throughout all stages of disease.

Other sessions that made an impression explored the issue of cancer predisposition genes. Douglas Easton spoke about this in relation to breast cancer, building on a session of his I attended at a previous conference. Around 100 common genetic variants have been found to be associated with breast cancer risk and they can combine multiplicatively. Some convey an increased risk (though nowhere near that of the BRCA mutations), while others are associated with lower than population risk.

Nazneen Rahman's lecture (which closed the conference) started from the point that cancer predisposition genes have now been found for over 40 different cancers. She spoke about the move from the linkage research, which led to the BRCA 1 & 2 success, to the candidate gene approach now bearing fruit.  She also pointed out the need for clinical guidelines covering the issue of incidental findings as gene testing becomes more widely available.

Away from these strands I attended an excellent session hosted by Alistair Thompson on developments in breast cancer radiotherapy. This looked at such topics as fractionation, access to intensity modulated radiotherapy and reducing cardiac risk using various techniques.

I went to a proffered paper session on clinical trials, in which 8 presenters each had a 10 minute slot in which to present their findings or ongoing work. These included the Pomi-T Study that found polyphenol rich foods to have a favourable effect on the rise of PSA in prostate cancer (so - meals of broccoli in turmeric sauce, followed by pomegranates and washed down with green tea!). Another trial, presented by Dan Rea, was the now well publicised aTTom trial which has concluded that 10 years of tamoxifen produces further benefit over the (previously) standard 5 years, with the increased benefits being seen after 7 years for recurrence and 10 years for mortality. The differences are regardless of nodal status.

Dan Rea was back for the Dragons' Den session in which researchers presented to members of the Consumer Liaison Group and other patient advocates. This time he was presenting the LORIS trial, which is due to open shortly. This trial will investigate whether women with low risk DCIS can safely avoid surgery. Trial participants will be randomised to standard treatment or active monitoring. For the QoL aspect there will be questionnaires for the first 5 years.

In addition to these sessions there was an exhibition and two sessions of poster presentation - but more of that next time...

Wednesday, 6 November 2013

The Issues with Tissues

Following on from the previous post, I have now returned from this year's excellent NCRI Conference. There are always difficult decisions about which sessions to attend and invariably I want to be in several places at once but there was one session that really was an absolute 'must' for me. That was the session hosted by Mairead MacKenzie of Independent Cancer Patients' Voice (ICPV) concerning tissue donation and titled 'The Issues with Tissues'. This session explored issues surrounding donation, collection and use of human tissue in cancer research.

The session opened with Mairead setting out the objectives and outlining how we would achieve that. Then it was over to Mariam Jamal-Hanjani who made a brilliant presentation of the rationale for the collection of tissue, picking up on the issues of heterogeneity and disease evolution that had featured in an earlier plenary lecture. The sparkle continued as she passed the baton over to Matthew Krebs, who took us into the collection of blood samples and analysis of circulating tumour cells.

The next section of the session looked at the issue of consent, with Helen Bulbeck outlining the work of Brainstrust and Hilary Stobart's powerful presentation on the role, rewards and challenges of the volunteers at Nottingham Health Science Biobank. The NHSB volunteers are part of an innovative consent pathway that clearly is bearing fruit in this important area of consent. (Hilary also featured in NHSB's poster on the use of volunteers.)

In the third section Jacqueline Hall took us through the challenges and complexities arising in the pan-Eupropean environment. I was particularly struck by her neat summing up of what was required to move forward as "simple and clear rules, rigorously applied".

The session then moved into a good question & answer and discussion session chaired by Bridget Wilkins.

ICPV are working, in collaboration with other groups, individuals and organisations, on the production of a public guide to tissue donation and, as a preliminary step, at the end of the session there were questionnaires distributed covering aspects of tissue donation.  These questionnaires have been devised by a small group of young pathologists.

I will write about other conference sessions over the coming days, but - once again - this was an excellent conference. Yesterday (5th November) was the anniversary of my own diagnosis of breast cancer. I can think of no more fitting way to spend the day than in attending this conference, nor of spending the evening than at the conference dinner and dance celebrating life and the ongoing work into cancer research.

Saturday, 2 November 2013

Surviving October

It will surprise no-one to read that I'm pleased to see the back of the traditional over-hypered Pink October. Happily I managed to avoid most of the grossness this year and so my personal award for the Most Tacky Pink Product is given courtesy of my sister blogger The Accidental Amazon and a product she featured in her recent post Bye-Bye Pinktober http://accidentalamazon.com/blog/2013/10/30/bye-bye-pinktober-a-futuristic-send-off/

And the award goes to ---- the Crawl for the Cure pink-clothed baby doll!   See Kathi's blog above for a photo including this.

There were, however, a couple of events that had I been in the right country at the right time I would have liked to have attended. One of these was Europa Donna Malta's Silhouette Walk from Sliema to Valletta. The walkers carried silhouettes; pink to represent a woman living with and beyond breast cancer, blue for a man with breast cancer and white for those we've lost to this disease. The photos show that this event was fun while raising awareness and honouring those who've gone before us.

The other event took place in Yangon, where a group gathered to share experiences, knowledge and personal accounts. http://feistybluegeckofightsback.wordpress.com/2013/10/27/tropical-cancer/

The October cancer highlight for me was the London Cancer Strategy Summit, held at the beginning of the month.  It was an encouraging and inspiring event, with participation from international and national guests as well as those from the immediate area. We considered our goals and aspirations, reviewed what we're achieved so far and looked to the future. I think that most of us came away with a renewed enthusiasm for the various work streams, as well as a sense of pride in some of the more groundbreaking aspects of this Integrated Cancer System.

Now, as November gathers pace and I move into my personal season of anniversaries and appointments, I can look forward to the coming conference of the National Cancer Research Institute. It is a packed programme and I know that there will be both exciting and disappointing news (that after all is the whole point of research) along side an opportunity for informal chats. To follow some of the highlights, check the hashtag #NCRI2013


Tuesday, 15 October 2013

Who Needs a Pink Wig ...

Well, we're half way through October and once again I'm trying to avoid the pictures of people wearing lurid pink wigs and inane grins. Pictures that all too frequently are put out by organisations who really ought to know better.  Also, once again, I'm trying to focus instead on the more appealing cancer research agenda - and this year I have a very positive experience on which to reflect.

About a month ago I was fortunate to be able to participate in the first running of a new week long residential course of science for patient advocates. Called VOICE (Vision On Information Confidence & Engagement), this course was developed by a collaboration between the charity Independent Cancer Patients' Voice and Barts Cancer Institute of Queen Mary College, University of London.

The mornings were spent in a series of lectures covering cell and cancer cell biology, different types of cancer, biomarkers, genetics, and clinical trials. The afternoons were spent in the laboratory, cementing and putting into practice what we were learning, understanding the techniques that underpin research, and seeing tissue being processed. Throughout the course, in addition to our lecturers, we were supported by a group of mentors drawn from the Institute's young researchers (and who made us cakes and biscuits!) Evenings were divided between guest lectures and social time mixing with our lecturers and mentors, plus the odd bit of homework and revision.



It was an ambitious, challenging and highly satisfying week and I think we all came away having learnt much and ready to put our learning into effect as we sit on trials management groups and steering committees, comment on drafts and proposals, and provide a patient perspective at a host of events and for a host of organisations.

The course is now being evaluated and the practical lessons learnt will help shape the next course.

The generosity of the staff and researchers was quite humbling and, in addition to the new knowledge (and yes, the Confidence of the course title), I have taken away the infectious and encouraging enthusiasm of our mentors. Not only did they answer our questions, but the work they are doing is our hope for the future -

who needs a pink wig when you have a Gilson pipette????

http://www.youtube.com/watch?v=fDF7s4PYQbg

Thanks to J. Garth for the photographs of the event

Wednesday, 12 June 2013

What is Survival?

Quite a lot has happened since my last post.  This has included the death of my brother-in-law from a combination of bladder cancer and a heart condition, and another work re-organisation and redundancy consultation (which I survived). But what is really occupying my mind today is the meaning, in Cancer-World, of the term "survival".

Three pieces of news have struck me this last week, and they are:

1. The prediction form Macmillan that in 2020 almost half the population of the UK will have a cancer diagnosis in their lifetime, but that 40% will "survive".

2. The death of Henry Cecil, race trainer.

3. The death of BBC broadcaster Rory Morrison.

Cecil was aged 70 and died of stomach cancer diagnosed in 2006, while Morrison was aged 48 and died of a lymphoma originally diagnosed in 2004.

So both of these men survived the five years that is all too often used as a bench mark for survival. Yet who could doubt that these men, and remember that Morrison was aged 48, died of cancer. Can we really say that they "survived" this disease?

As more modern treatments push back the boundaries of disease-free survival, we could be in danger of a public perception based on 5 year survival statistics that the battle, at least in some cancers, is almost won. It is true that more effective treatments combined, in some cases, with the possibility of earlier diagnoses, do mean that there are more "cures" (not a word I really like because the reality tends to be less simplistic) or at least, the staving off of the evil day to a time beyond that when other issues intervene. It is true that some people really are cured and won't see a return of the disease, and this is a wonderful advance. But for many more it is simply an extension of the evil day when disease "returns". I'm sure that if we were to ask someone what they would consider as survival it would not include dying of the disease nine years later, especially if that meant dying at age 48.

So while I am grateful for those advances that can put off that evil day, I know that there is still much work to be done before we can really say in any meaningful way that 40% of people diagnosed with cancer will survive it.

After all, I don't think I will say that being alive at age 56 means I've survived...