6 monthly scan results

A couple of weeks ago I visited the Royal Marsden for my Summer 6 month scans – chest x-ray, ultrasound and boob squish.  Stupidly (and I should know better) I neglected to take some ibuprofen before my boob squish.  I was once again in extreme pain and so super envious of ladies who don’t have pain.  (How do some ladies go jogging without a secure bra?)  I suspected the mammographer had spotted something as she insisted on doing a couple of extra scans to ‘get in the sides’.

Next up was my ultrasound.  Whilst I was changing into my ‘everso sexy’ dressing gown, I heard the radiographer being called in to see my mammogram results.  Long story short she said she could see a small dot but suspected it is a cyst.

Today was my appointment with my consultant.  He has vast experience with phyllodes tumours as well as a wonderful disposition and honest, caring approach to me, the patient.  I’m so very grateful for such a fabulous consultant.

We talked about ‘the dot’.  We’re not sure it’s a cyst.  I’ve had no other cysts before now.  BUT rather than poke around and upset my breast tissue, we decided to leave it ‘just so’.  My consultant has asked that in six months we have a full set of scans and tests again (usually I have a mammogram once a year in the Summer).  He did, however say that if I had any concerns or worries at all, I was to contact him directly and an appointment would be found.  I’m happy with this.  I appreciate his experience and the open discussion.  I feel assured I’m in the best hands and care.

He also made sure we spoke about my auto-immune disease.  The drugs I had taken and the side affects I’m still left with (as well as the residual disease).

We spoke about my friend who’s currently undergoing surgeries following the discovery of new phyllodes tumours in her heart, liver and lung.  He wants me to forward details of the hospital and surgeon so he can learn more about the case and educate himself and his team.

We also spoke about a clinical trial that I’m trying to get set up in the UK for Phyllodes.  I’ll write more about it soon… hopefully with good news.  Once again, he wants me to keep him in the picture so that he can ensure he/the Royal Marsden are able to recruit for the trial.  Such positive news, we hope.

Finally we spoke about life.  His and mine.  He asked me how I was doing.  Was there anything else I was worried about.  Any other aches, pains or points of concern.

I feel totally looked after… and hopefully the dot will remain just that, a dot.

Sarcoma Support

Sarcoma UK‘s Annual report arrived in this post this morning with a little note “.. you may recognise a certain person inside :-)…”

Well there I am!   Taken at the Sarcoma UK’s Big Conversation Day last year.Sarcoma UKMy quote “Being diagnosed with a sarcoma can be isolating due to the rarity of this type of cancer. …” remains absolutely true for many today.

Sarcoma is rare.  Divide ‘Sarcoma’ into types – soft tissue and bone.  Then divide further into the different sub-types.  Each sub-type is different with it’s own surgical regimen and treatment plan.

Now try and find others who understand what you’ve been diagnosed with!

(This doesn’t just apply to cancer or sarcoma.  There are some very special/rare/unique diseases of other kinds that also must fear the unknown and isolation when diagnosed).

Fortunately with people having more access to the internet and feeling more confident to use it for support, this has meant a far further reach for support.  Certainly I’m not sure how I would have coped had it not been for our wonderful Facebook Phyllodes Support Group members.  For all the criticism about social media and all that is wrong with it, there is an enormous amount that’s right.

For those fortunate enough to be able to travel or live near a physical support group – Sarcoma UK run a number of support groups up and down the country as well as online forums.  More information can be found here

My Health Update

Well there’s good news and bad news…

The good news is that I had my 6 monthly ultrasound and chest x-ray and no sign of any lumps of mets from Phyllodes.  That’s the good news.

I also met my new consultant at the Royal Marsden.  Lovely chap who’s just returned from working in the US.  He understood the frustrations with a rare cancer diagnosis and I was delighted that he’d taken the time to read my notes and know about ME.

He kindly spent time with me chatting about how I’d been and asking if there was anything I was concerned about.  I told him that my boobs were still very painful (they always have been, but so much worse since Phyllodes, however probably nothing to be overly concerned about as I have such a good follow-up regimen).

I also showed him a rash I have had – I only showed him the rash on my wrists.  (The poor radiographer who had done my ultrasound a few weeks earlier had been utterly surprised by the rash on my boobs and armpits.  She looked genuinely shocked and horrified that I’d been waiting for several months to get a dermatology appointment…. more about that in the ‘bad news’ section.)  My consultant didn’t know what it could be but thought it may be auto-immune.  This then led me to ask him what he knew or suspected about a connection between Phyllodes and auto-immune illnesses.  His response **raised eyebrows** “that’s very interesting, why?”.  I told him that within our Facebook Phyllodes Support Group we had, and are still running, a poll asking members if they (or family members) had been ever been diagnosed with an auto-immune disease.  Although only 150odd people have responded there’s a big percentage that have a link.  Auto-immune disease is a spectrum of disease though and covers psoriasis to multiple sclerosis.

A good explanation of auto-immune disease is:

Autoimmune diseases are a large group of conditions. They include

Rheumatoid arthritis
Multiple sclerosis
Inflammatory bowel diseases
Skin conditions, such as psoriasis

If you have an autoimmune disease, your own immune system attacks your body tissues. Normally, our immune system protects our body against infections caused by bacteria, viruses and other parasites. It recognises when something foreign enters your body and can usually get rid of it before it causes you any harm. But if you have an autoimmune disease, your immune system can make mistakes. Your immune cells start to attack your own normal body cells.

I left the Royal Marsden feeling assured about my Phyllodes health but also that they are assisting me and others diagnosed with Phyllodes in researching and answering questions for our Phyllodes Support Group.  My consultant has subsequently emailed me to let me know he has chased the researcher who has a list of ‘basic’ Phyllodes questions to answer that I sent in a while ago.  The answers to these questions will allay many fears for newly diagnosed Phyllodes patients.  As it is so rare and there is little/no clinical research to rely on, I have suggested that they caveat any answers of concern with ‘in the experience of Royal Marsden’ or ‘to the best of our knowledge’ etc.  It would be good to have some answers on behalf of the UK sarcoma medical profession.  It is then aimed that the same questions will be put to medical professionals in the US, Australia and Asia.  All four sets of responses will then become available to new members of the Phyllodes Support Group.

My consultant also advised in his email that he’s asked the research team to look at any links between Phyllodes and auto-immune diseases.

The bad news…

…back to the rash.

At the end of October the soles of my feet started to really itch.  Initially there was nothing visible but soon there were small spots and dry patches.  I did wonder if I had fleas or bugs in the carpet.  I wish!  Next a sore angry rash appeared on my wrists, the palm of my left hand and both ankles.  I spent an age hoovering and rehoovering carpets, cleaning, dusting and generally convinced that it must be bugs.  Convinced that the spread to my hands and wrists must be because I’m scratching my feet.  I have been, as I’ve previously on my blog, very tired or fatigued for months/years but it had been getting worse. I know most of you see my facebook posts about my playing of tennis and going out… but you don’t get to see the posts that say I’m having an afternoon nap and didn’t wake up until midday and back in bed early or staying in most evenings.

Back to the rash.  By early November I could cope no more.  It sounded ridiculous but I was on the brink of tears trying to get a GP appointment asap for a ‘rash’.  I wasn’t sleeping well as the itching was so much worse at night.  My visual migraines returned and headaches for fun too.

My GP looked at the rash, said she didn’t know what it was and referred me to a dermatologist.  A few days later she called to say that the referral had been rejected and I needed to try a rash cream.  After a week of slathering myself in the cream, the rash had just spread and was as red and raw, if not more, than before the cream.  I booked another GP appointment.  This time she referred me again with a stronger note and saying the rash had now spread to my chest, armpits, groin, crook of my elbows and crook of my knee as well as my bellybutton… so basically anywhere that gets hot!

A few photos taken at the beginning of December:

LP - December

I waited… and waited… and chased up my appointment… and waited… and was told that my referral hadn’t worked in the system… had to chase my GP to do it again… and waited… and waited… and then called my GP again (in tears)… and waited… chased the referral service… who referred me back to my GP… who referred me back to the service… I cried… who then took pity on me and gave me a reference number, my secret NHS booking password and the number of the dermatology practice… I called them and was told the earliest appointment was over two months away… I booked it… put down the phone and cried again.

I know it was ‘just a rash’ but it F’ing hurt and believe it or not I was worried about the rate at which it was spreading.

I missed an ex-colleague’s funeral. Although the GP had said it wasn’t contagious, she didn’t know what it was and I couldn’t risk attending a funeral where other cancer patients may have compromised immune systems.   I’m sure Ally would have understood.

I was wanting friends, who’s daughter had been hit by a car in October and were ‘camping’ out in my local hospital at her bedside, to spend an evening with me so I could cook a homemade meal for them.  Again I was too scared that should this be contagious I’d make their situation worse just because I’d like to cook for them.  In the end I prepared a Friday night Indian takeaway meal of curry, dahl, naan, pilau rice, bhaji, poppadom, wine and beer.  The food prepped and cooked with me in latex gloves.  I also made some homemade soup for them for another night.  I did seem silly asking them to call round on the way home from the hospital to collect it without inviting them to stay.  I didn’t want to take the risk.  I’d never forgive my selfishness.

Apologies to anyone else I’ve not seen, rain-checked or not taken up some fun outing but I hope now you’ll understand why.

Just before Christmas I again called the GP and this time insisted on seeing my old GP at the practice, who’s been my GP since the 1980s.  He understood why I was so upset.  Looked at the spreading rash, he also said he didn’t believe it was contagious but didn’t know what it was.  He then wrote out a prescription that meant I had a drug that not only managed nighttime itching (generally eczema) but also had a sedative in it.  However he didn’t think it would cure the rash.  What a treat on 23rd December to have sleep!

Finally, 10 days ago, my appointment with a very kind dermatology specialist arrived.  I should have taken photos at this stage – definitely the worst time.  Diagnosis took just a few minutes.  Her opening line was “oooh I think I know what it is.  It’s very rare and you seem to have a severe case”.  (Oh joy another rare thing for me then!).  After consulting the computer and getting a second opinion from a colleague she told me that I’ve got an auto-immune disease, Lichen Planus.  So far my Lichen Planus (LP) is only external.

She did think that the LP may be caused by something else wrong in my body which has caused the LP to flare.  Blood tests ASAP.  Possible damaged liver or hepatitis.

I left with a prescription for some uber moisturiser and a really strong steroid cream.  She was concerned about giving me oral steroids as apparently what would be required for LP is super strong, has side affects and may be something that I have to continue to take.  So creams first.

I felt relieved to know what it was and had full confirmation that it’s not contagious.  But scared as to what it may be disguising.

As the itching was still horrendous (but being treated) my original GP also kindly did a new prescription for the sedative pills so I can sleep.

So it’s been a crazy time.  Lots of time slathering moisturiser and steroid creams on my body.  For the most part the rash is less angry, the blisters are rarer and for the most part I’m just scarred.   The worst areas are where it started and first spread ie the feet and wrists.  Some photos from earlier today:

Lichen PlanusI’m worried about some new itches and spots on my scalp and mouth ulcers and spots.  From what I’ve read these areas can only be treated orally and if it spreads on the scalp may lead to permanent alopecia.

I’ve got my next dermatology appointment at the end of this month.  Hopefully the creams will have sorted the external spots and the other itching is only in my mind!  I’ll then get the results of my blood tests too.

I’m also feeling much better than I did when first I heard the name Lichen Planus, as I’ve found a fabulous support group on Facebook.  It’s been reassuring to ‘chat’ with others who’ve been diagnosed.  For the most part they talk about it taking months/years to clear and then returning some years later.  I’ve also read about it being incurable but manageable.  It was also been reassuring to hear that there are others who have loss of balance, visual migraines and fatigue – seems this may be something to do with what I’ve been experiencing.

I have been truly fed up though.  I’m fed up of being ‘rare’.  I’m fed up of having stupid and many symptoms.  I’m fed up of worrying about going to see my GP.  I’m fed up with trying to pick my ‘worst’ symptoms to tell the GP about rather than bother them with them all in the limited appointment time.  Nothing seems to be specific or fit into the box.  I hate being a GP botherer however I’m wondering if maybe I should have been earlier ie before LP showed up as a rash.

Anyway enough for now… thought you should know.

BTW I did email my Phyllodes consultant to tell him I’ve been diagnosed with an auto-immune disease.  He’ll be adding LP to his research.

So there you go… the good, the bad and the ugly (well that’s evident from my photos!)

And also… it was results day!

This afternoon I met with my new consultant at the Royal Marsden to receive the results of my 6 monthly scans.

ALL CLEAR!  Bring it on… another 6 months under my belt.

I had a lovely chat with my new consultant.  What a wonderful Dr.  We were able to discuss a whole host of things that have been raised via the Phyllodes Support Group.  He’s assisting with putting some ‘advice sheets’ together for the Group and also investigating some links to other research I flagged today.  Interesting also as he has been working in the US for many years and understands the differences between the US and UK for Phyllodes.  Very useful insights.

He shook my hand and congratulated me when I told him I managed to get Phyllodes mentioned on TV today!

Genetic Testing

In August 2011 one of my co-administrators in the Phyllodes Support Group posted in the group a request for 1,000 people who had been diagnosed with sarcoma to be part of a sarcoma research project on 23andMe.  The project was sponsored by 5 charities, Beat Sarcoma, Sarcoma UK, Association of Cancer Online Resources, Sarcoma Foundation of America and Sarcoma Alliance.  The aim was to genetically test 1,000 people who’d already been diagnosed with a sarcoma and see if this testing would find a link between us all.

A spit sample with the aim of producing a valuable research outcome that may help thousands of others in the future.  Of course, I registered immediately.

As part of the testing process each participant received their genetic test results free of charge.  I’d never considered having genetic testing so for me the test results were an added bonus.

Between my spit sample being collected by a DHL courier (who looked horrified when I had to declare the content of the package being sent to the US), and my receiving the results I found myself wondering what I would find out, whether I should even read the results, what I would do IF it told me something I’d not like to know.

At the time in the UK the process for genetic testing was to be referred by your Dr and to have counselling as part of the test.  The counselling is carried out before, during and after your test results to ensure you’re able to cope with the results and what you would do should they not be what you expected.

However as I was participating in a project run via the US, counselling was not offered and I’d not thought it would be of concern when I signed up.

Me being me, decided that I should do my own ‘counselling’ and, as far as I’m able, ensure that I’m in the best mental state to manage any results – good or bad.  I made myself consider what it would be like if I opened the email to discover that I was high risk of an illness, what I would do, who I should tell etc.  I made myself not only consider it but imagine that was the result.  I needed to know how I’d cope and what I would do in those circumstances.

So when I received an email “Your 23andMe Results are Ready!‏”, I felt prepared.  Although I confess to not opening the email for an hour or so whilst I paced and reconsidered what I’d do.

I was fascinated when I opened up the results.  How could a little bit of spit identify that I had blonde straighter hair on average, blue eyes and if a smoker, likely to smoke more!  All correct although I’ve now not smoked for years.

Within Disease risk, I discovered that I’m slightly higher at risk of coronary heart disease, ulcerative colitis, breast cancer, celiac, Crohn’s and Lupus.  But these are all relative.  On most of them I’m only very slightly higher and still it’s only 0.5% chance where the average population is 0.2%.   I can see however that one might read that as over twice the risk of the average population rather than 99.5% risk of NOT having the disease.

With all statistics and numbers it’s difficult to interpret them without emotion and to understand percentage risks in a way that’s meaningful.

I was however angry when I read my results for multiple sclerosis.  Mum had MS and my Aunt was diagnosed after Mum in the early 90s.  I remember Mum telling me that as MS is something that generally passes down the female line, according to her Dr I had now a 50:50 risk of being diagnosed with MS.  I’ll admit that this has weighed heavily on my mind since then and has infuenced decisions I’ve made in my life.  One of my school friends, Belinda, was diagnosed in her 20s with MS and passed away a few years after diagnosis.  And I’ve watched Mum become less able and eventually pass away from MS.  So when the results of my 23andMe genetic testing indicated that my risk of being diagnosed with MS was less than the average population, I was livid.  I was furious that I’d spent 25 years worrying about it.  Every time I had numbness or tingling in my fingers and toes, when my eyesight was playing up and many other ‘symptoms’, I’d wondered if it was the start of MS.  Ironically over the years I’ve never thought that they could have been wrong… 25 years ago they knew far less than they now know!

So what else did my results show me?  Actually I’m quite healthy!  For the most part I’ve a typical result or one that isn’t far off the average population.  I also know I have an increased sensitivity to Warfarin… so should I ever be prescribed this, I will know to tell the Dr that I need a decreased dose!  Nothing of note within my Carrier Status.  Only disease risks that are more than double the average population are melanoma (3.6%), celiac (0.7%) and lupus (0.5%)… but they’re still only very small percentages so I’m not going to worrry about them.

Since my first registration I’ve received regular updates from 23andMe when new research comes to light and my results are re-assessed.  I’ve been fascinated to read them.

Within 23andMe you are able to link your results to others and many of us from our Phyllodes Support Group who took part in the trial have done this.  We thought it may be interesting to see if there were traits/risks that we could identify between our small cohort group.  Sadly we couldn’t see anything that stood out with the exception that many of us had higher than average auto-immune disease risks.

So why this post now?

23andMe have just launched in the UK.  This means that anyone is able, for a price, to obtain their own genetic testing via 23andMe and without genetic counselling.  It’s a service accessible via the internet.

Germany are considering 23andMe being available there.  This week I was asked my views on it and asked to record a piece for their TV channel ZDF.  You can see it here from about 4.10.

Inevitably there’s been lots of discussion about whether it’s a good thing.  Whether genetic testing should be allowed without counselling?  Whether the results provided by 23andMe are accurate enough and using up to date data?  My view, is ‘Yes’ but with caution.  Anyone undertaking genetic testing needs to consider why they’re doing it.  What they want to know/understand from the test results.  How they’d deal with the results being good or bad.  Who they’d tell.

I wouldn’t have had my genetic testing carried out were it not for the Sarcoma Community Project.  However I’m pleased I did.  I feel I know more about myself, my health and my risks than before.

 

Mammogram time

You’ll remember I recently went for my six monthly scans which are all part of the follow up regimen following my diagnosis with malignant phyllodes and DCIS.  You may also remember that they had ‘forgotten’ to book my annual mammogram.  I’ve had some truly frustrating phone calls and several tears whilst trying to ‘remind’ the team what was agreed as a good regimen to monitor my health.

My appointment letter was received a few days ago and today I went into the RMH for my mammogram.  Unlike when I was there a few weeks ago, the clinic was virtually empty and I was seen immediately.  It’s crazy when I think about me having to chase and WANT a mammogram.  They’re usually painful and as my breasts get more lumpy with age and scar tissue they are becoming even more painful.  The mammographer was kind and tried to be as quick as possible but needed to take quite a few scans covering lots of tissue and angles.  Part of me wishes I didn’t need to do them at all as the pain is so bad (today was truly dreadful) but I also know that these are the best way to identify changes and see any Phyllodes appear.

Next stop is my appointment with the sarcoma team (and I presume a new consultant) for the results of the ultrasound, chest x-ray and now mammogram.  Only a few more sleepless nights…

Regular scans

You listen to me every 6 months talk about the follow up scans, the scanxiety and the results.

Well it’s that time again.  It explains why I’m more than a little antsy too.  No matter whether I’m thinking about it or not, somewhere in the depths of my brain is a little voice saying ‘maybe this time’.  With every twinge or pain that I get in my boobs (and believe me I get a lot) or my back, I wonder if it’s related.  I still get shooting pains which apparently is from the surgery and when I’ve previously discussed the pain with the consultants, I’m told that perhaps this is ‘normal’ for me.  But what IS normal?  How can I differentiate what would have been there anyway and what is because of the surgeries or phyllodes?

I digress but perhaps you might understand why I get anxious.  So last Friday I trotted along to the Royal Marsden.  Appointment card, request for a chest x-ray and letters making and changing my ultrasound appointment firmly in my hand.  I hadn’t received a mammogram appointment letter but presumed that this would be booked in when I got there and that the letter hadn’t yet arrived – previous experience of my receiving the appointment letter after the appointment had taken place fresh in mind!

The waiting room for ultrasound is full but we’re seen quickly.  I’m greeted by my usual lovely sonographer and introduced to a trainee sonographer who is due to qualify into the Marsden in a few months.  I mention that I’ve not received a mammogram appointment.  The trainee does the first exam.  It’s painful as she goes over lumps and bumps (I presume scar tissue) and on occasion stops to have a closer examination of areas.  It’s a little off-putting watching her face as she thinks she see something and hasn’t quite mastered the poker face yet – I guess that’s part of her training.  Then my usual sonographer takes over and they discuss their findings – “usual ‘oddness’, scar tissue and lobular neoplasia” but nothing unusual for me and apparently nothing to worry about.  I’m reminded that I should follow up for a mammogram appointment today.

Next stop chest x-ray.  This is such a quick procedure.  Stand in front of a black panel and breathe.  All done.  I was keen to get this x-ray today.  I’ve had a weird ‘catch’ in my breath and occasional wheezing of late… I’m hoping it relates to the virus I had a few months ago and nothing more sinister.

Now to head to the Outpatients Reception to see if I can find out about the missing mammogram.  I’m given a telephone number for a sarcoma CNS.  I call internally to discover the team are all in an MDT meeting.  Disappointed I head off and leave the Marsden.

I’ll get my results from my consultant at the next appointment which is in 5 weeks time.  It’s ridiculous that the results appointment is so long after the scans – more scanxiety!

Yesterday however I managed to speak to the sarcoma CNS.  She wasn’t sure why I hadn’t had a mammogram appointment and went away to check.  My consultant has now left the Marsden and apparently I’m now under a different consultant but my mammograms are under the breast cancer team.  WHY???

According to whomever she spoke with, I don’t need mammograms in my followup and that an ultrasound and chest x-ray is enough.  Aggggggh the agreed followup was for annual mammogram and six monthly ultrasounds and chest x-rays because Phyllodes doesn’t always show up on ultrasound until it’s grown bigger.  I explained this as calmly as I could… and then promptly burst into tears when I hung up the phone.

The Marsden are great.  They’re a centre for excellence for sarcoma.  BUT I’m waiting for an appointment that actually goes according to plan.  A time when I don’t have to run around the hospital chasing up something or booking in to a different location or calling up to find out what’s going on.  Truly I’m not sure but assume that within the hospital they have a multitude of non-communicating IT systems.  If only the realised the anxiety that these inefficiencies caused to their patients and carers.  I know I’m not the only this happens to as am often having my ear bashed in the waiting room listening to someone else’s anxiety.

So I guess I’ll have to wait for the sarcoma CNS to call me back.  And then wait for the mammogram appointment.  Or perhaps wait until my consultant appointment in July for the results of the ultrasound and chest x-ray.  Discuss with the consultant in July about my having a mammogram, get that booked in, turn up for another appointment and then have to have a further consultant appointment for the result.  Just as well I’m not in full-time employment with all these days off.

I wonder who my new consultant is?

NCIN Conference 2014 (Day 1)

The NCIN (National Cancer Intelligence Network) is a UK-wide initiative, working to drive improvements in standards of cancer care and clinical outcomes by improving and using the information collected about cancer patients for analysis, publication and research.

When I was first aware of the NCIN, their goal was “To develop the best cancer information service of any large country in the world – by 2012”.

Because of the work they continue to do, UK clinicians, medics, researchers, NHS purse holders, pharma, charities and, of course, patients are now able to draw on an incredible amount of useful data-sets.  This data enables measures to improve outcomes, drug development, research projects, awareness and own patient care.

This year I was honoured to be invited again to attend the NCIN Conference with a bursary place and below is a summary from my notes at the Conference.  Wherever available I have added links to presentations.

Cancer Outcomes Conference 2014 – the power of information
Sponsored by Cancer Research UK and Macmillan

Chris Carrigan
Director of NCIN Public Health England (PHE) 

Chris opened the conference and welcomed those attending.  This year’s conference attendance is larger than ever before with over 570 people attending.  With national and international spread from primary to end of life, charities and patients.

Chris (@C_Carrigan) wrote a blog at the start of the conference on twitter on how bringing people together can improve cancer outcomes – read here


Harnessing the power of information to deliver quality and innovation in cancer surveillance, services and outcomes

Chair: Prof Brian Ferguson
Knowledge Transfer and Innovation Director at PHE
“Innovation at the heart of Public Health England.

Kris Hallenga
Coppafeel! @krispop @coppafeelpeople
Ensuring everyone stands the best chance of surviving breast cancer

Kris#NCIN2014, Let’s talk boobs

Kris ‘story’ is well documented not least on an incredible documentary that has just been shown on TV “Dying to Live“.

Kris was 22 when she noticed lump.  She ignored for a long time. Eventually went to GP and told more likely to be hormonal.  Went travelling and noticed the lump was getting bigger. Returned to GP. Told nothing. Mum got involved. Returned to GP. 8 months after first going to GP was referred and told breast cancer and spread to spine.

1 in 15,000 chance of getting breast cancer under 25.

“You beat the odds in getting the disease and can beat the odds to get rid of cancer.”

2 months into treatment Kris researched why she didn’t know more about cancer at a younger age and what to expect.

She knew she couldn’t change her diagnosis but she could make it better.  Or as Kris said “You can’t polish a turd… but you can roll it in glitter…”

She kept hearing “Early detection is the best form of defence.”  Why wasn’t there breast cancer awareness in schools, universities, 6th form colleges?  Surely that’d lead to earlier detection.

So Kris thought about where she could reach these young people.   Armed with CoppaFeel! stickers set off to a festival.  Whilst facepainting with her twin sister people started approaching and talking about boobs.  Talking about breast cancer.  Talking about checking yourself.

CoppaFeel! are now a regular set up at music festivals, university campus and many other locations filled with younger people.

As well as Kris and her sister talking about boobs, there are now the Boobettes – young women who’ve been diagnosed with Breast Cancer.  They go into and talk at schools and events about their experiences and awareness and early diagnosis.

Kris has asked “What does BC mean to young people?” and got these answers (amongst others) – life-stopping, turmoil, depressing, threatening, damaging… not good and words that put you off from checking your boobs.
It is a very treatable disease if diagnosed early.

1 in 3 are diagnosed with cancer.  Early diagnosis is key.  #rethinkcancer is a campaign to bring cancer education into schools, colleges and universities.  “I know it will help and I know they want to know it… I’ve spent the last 5 years speaking with them.”

Put an end to late diagnosis of cancer.

Kris Rethink Cancer

The stats of tomorrow are the young people of today… it can happen to young people. It should go through the mind or every GP and medical professional out there.

“If you have influence please use it. If you have colleagues please pass the message on. If you have boobs, please check them.

Think boobs.”

~~~~~~~~~~~~~~~~~~

Prof John Newton
Chief Knowledge Officer, PHE
Cancer – A public health perspective

Presentation

So many things to learn from what Kris was saying. Behind every statistic and data is a real person like Kris. This should be a reminder.

4 things we need to do:

  • Prevention
  • Diagnosing cancer early
  • Make sure very patient gets the best treatment
  • Care of people who are living with cancer, whatever the outcome

Struck by Cancer Research UK stats that 40% of cancers are preventable. There is a huge challenge but we as a population need to address it.

Good news is that we have the best treatment services and charities in the UK. We have some of the best intelligence systems in the world. The best Cancer Registry.

No doubt that cancer intelligence NCIN has played it’s part in improvements. More that we could do with the data to improve outcomes and prevent cancers.

How do we build NCIN in Public Health England to get even better outcomes?

Mission – “To protect and improve the nations health and to address inequalities working with national and local government, the NHS, industry, academia, the public and the voluntary and community sector”

Broken down into manageable chunks – outcome focused.

  • Helping people to live longer and more healthy lives by reducing preventable deaths and the burden of ill health associated with smoking, obesity etc
  • Reducing the burden of disease and disability in life by focusing on preventing and recovery.
  • Protecting the country from infectious diseases and environmental hazards
  • Supporting families
  • Health in the workplace
  • Promoting development of place based public health systems
  • Developing our own capacity and capability to provide professional scientific and delivery expertise

PHE’s jewels in the crown:

  • National Screening Programme
  • National Cancer Registration Service
  • National Cancer Intelligence Network.

PHE inherited some strong partnerships with many including:
National Cancer Peer Review and National Cancer Research Institute.

PHE have a significant local presence:

  • 4 regions, 15 centres
  • 8 cancer registration teams
  • Central coordination and analytical team
  • 8 knowledge and intelligence teams around the country

Track record of delivery is increasing….

  • National Cancer Registration Service
  • Completed the national migration
  • Data going out trusts
  • Published staging data
  • Cancer analysis system implemented
  • Prostate cancer data network

Our public health perspective:
NCIN

  • Be clear on cancer campaign evaluations have been carried out for lung, blood in pee, breast cancer in over 70s, ovarian, oesophago-gastric, lung reminder and local skin cancer pilot.
  • Analytical work by the central and knowledge and intelligence teams
    • 16 data briefings, 23 in depth reports, 9 press releases
      17 journal articles, profiles, toolkits, routes to diagnosis, workshops for clinicans…
  • New office for data release is established and now operational
  • Reports analytics from the page impressions on our websites show an increase both nationally and internationally.

Collaborative work:

  • Deprivation report with CRUK
  • Routes from Diagnosis with Macmillan
  • Less common cancers – Cancer 52

The patient portal:

  • NCRS and NCIN
  • Brians Trust
  • Cancer Research UK

Summary/Future Look

  • Cancer remains as a significant public health issue
  • Many national cancer bodies inside PHE brings definite synergies, some of which we are now seeing, but there is much more to do… we want your help with it.
  • Growing demands for our intelligence capacity
  • NCIN will grow and flourish as a partnership and as part of PHE’s integrated cancer programme.

Increasing value to assets whilst data, partnerships and resources continue to flourish and grow.  We need to work together to ensure that this data and these collaborations continue to demonstrate improvement for cancer outcomes.

~~~~~~~~~~~~~~~~~~

Sean Duffy
National Clinical Director for Cancer – NHS England
Progress on the delivery of optimal care for cancer patients in the new NHS

Presentation

Optimal cancer care in the new NHS – an absolute commitment to deliver services for better outcomes.

The survival challenge

  • Mortality improvements v survival gap
    • Although we’ve made gains in the survival in the UK. Other countries have also had improvements.  We need not to equal the other countries improvements but to ensure our improvements are greater.
    • Eurocare 5 (2013 analysis of 2007 data)
  • Stage at presentation and earlier diagnosis.
    • We need a cultural and system shift to lead a stage shift.
    • Primary care interface – % flows
      • GP direct access to tests. Does it make a difference. On average access to test should make a difference for 6% cases. BUT hides 15-20% for cases such as stomach, ovarian, pancreas, renal, brain.
    • Route to diagnoss, England 2006-2008
      • All cancers emergency presentations 24%

Ownership of treatment decision
We should ask every MDT in every hospital to look at least once a year at the decisions it has made (treatments) and what it has meant for its patients (outcomes).  By revisiting these decisions they may be able to see improvements or identify changes that need to be made.

National datasets for cancer should enable the work – chemo, radiotherapy and outcomes data
National audits need to be used more.
Transparency is essential

12 senate geographies for the cancer map. If they took a grip of their own survival curves then we could be in a better position.
Plea – Own your 1 year survival and work collaboratively together.

Selection bias

  • Age and outcomes
    • 34% of 80-84 and 43% of 85+ are diagnosed via emergency route compared to 25% of 70-79 year olds.
  • Age and treatment
    • Access to treatment of the older population is variable. There is an age bias that exists and the data sets demonstrate this. Not just for surgery but also chemo, radio and access to a cancer nurse specialist.
    • Perhaps there could be a co-morbitity and late stage diagnosis but not completely responsible for decline in survival in older patients.
    • Older patients get less chemotherapy delivery for colorectal patients.

Structure

  • Key factors that influence greatest impact is access
  • The question of volume and outcomes
  • Community of care, not individual or isolated providers
  • Redefine the model – ideal structure within given senate geographers based on IOG principles and evidence.

What is best and where?

Summary

  • Gap in survival to tackle together.
  • Effective plan for early diagnosis to ensure the front end of our health care system delivers what you need it to.
  • Local MDT and senate geography focus on outcomes as a result of treatment decisions is vital to improve survival.
  • There is an inherent age bias that if tackled could yield significant survival benefits.
  • The evidence for volume linked to survival outcome cannot be ignored.

Q&A

Q (Kathy – London Cancer Alliance) – What has happened with the key recommendation in 1995 re early diagnosis?  Ambition was to go much further than they did at the time. The data at that time wasn’t as robust as at the moment. We have to be driven by the evidence. Any change moving forward has to be with improvements.
A (Michael CR_UK) – Are you talking to your colleagues in Scotland Wales and N Ireland about how to tackle the problems as a UK wide problem?
We are an English organisation but we are doing as much as we can with the UK. Spoke last week with the Welsh Health Minister (who are producing a white paper which is very interesting). Certainly on research we are very keen to work across the UK. Every reason and possibility of working across the UK not just England.
Julia Vern NCIN public health lead – UK and Ireland Association of Cancer Registries – absolutely a priority for all of us.

Q (Bob – Former NHS professional and lay rep) – Where is recent data?
A – Pointing you to the right person for the data question.

Q (Ian – Patient) – Emphasis is always on the clinicians rather than the patients. If there was more of a focus on the patient not the clinicians then I think you would see more survival times. Supporting stop smoking, diet etc particularly those of the poorer socioeconomic groups.
A – I think you’re right. Workstreams should be looking at exercise and other actions as a joint initiative between NHS England and Public Health England.
Approach moves away from a health service that provides testament for someone who is ill, rather than helping patients help themselves before they become a patient… it needs collaboration with charities, education and health care systems.

Q (Ms Clifton – Clic Sergeant) – Early/late diagnosis. GP dismissal of patients. Is any research done on looking at the reasons for late diagnosis or sending for tests in primary care?
A – How long have we got? There is a lot of research and simple things that primary care have developed to be more proactive. Got plenty to base a plan and are working on it. Key for me is that this is about public and primary care behaviour. The new changes should enable us to have more conversations and changes in this area.
Kris – We ran a focus group with some GPs. Reduction of the younger patients and also looked at the flip side of empowering patients about what you expect from a GP visit. Makes a huge difference.

Q – (Sara Hyams CR_UK) – Pick up on the age issue. How do we get more on the agenda for early diagnosis of the younger patients? i.e. under 30. How can we also improve things at the other end of the scale too?

Q – CCG – when would staging data be available to CCG levels?
A – Staging data has already been published. By CCG I understand it’s going to be June. NCIN is publishing it later this month.

Q – Health intelligence officer – I’ve got a 23 year old daughter. All this activity around data and intelligence isn’t worth anything unless it is used for the benefit of the patients.

~~~~~~~~~~~~~~~~~~

Plenary 1 – Outcomes for young people with cancer: matching commissioning guidance with the evidence

Martin McCabe
Chair of NCIN Young Patient Oncologist

NICE guidance on improving outcomes for young people and children with cancer.  (“CYP” children & young people)

  • Care co-ordinated as close to home as possible
  • Networks should meet the needs of CYP with cancer
  • MDT should provide cancer acre
  • Each CYP with cancer should have a key worker
  • Care appropriate to CYPs age and type of cancer
  • CYP with cancer should be offered the chance to take part in research trials
  • Treatment should be based on agreed protocols
  • Sufficient specialist staff
  • A register of all cancers in people aged 15-24

National Registry of Childhood Tumours
Established in England, Soctland and Wales in 1962

Childhood cancer isn’t well fit with ICCD coding so they have their own code. Birch coding.

TYA cancer
Teenage and Adult with Cancer TYAC founded in 2004.

In children cancer is always rare. Rare because it’s found in a child or because it is rare anyway.

Looking at survival AND important is quality of survival for children and young people.

Treated at a Principle Treatment Centre… but what happens when they’re referred out of the PTC?

One of the main advancements in childhood cancers is the enrollment of children into clinical trials. New paper from NCRI to be published very shortly which demonstrates this.

~~~~~~~~~~~~~~~~~~

Kathy Pritchard-Jones
UCL London Cancer
Paediatric clinical outcomes research – UK policy and the role of the European Network of Cancer Research in Children and Adolescents – early diagnosis

Talking about the European agenda for paediatric cancer clinical outcomes research.
ENCCA European network for cancer research in children and adolescents 2011-15
SIOP European standard of care for children with cancer
ExPO-r-NET European Expert Paed Oncology Research Network for Diagnostics and Treatment

Outcomes research

  • Outcomes seeks to provide evidence bout which intervention work best
  • Study of the end results of health services to take account opatients experience and costs to society
  • Provide scientific evidence

NHS Outcomes of framework

  • What can we really measure that is important to patients?

ENCCA – in 4th year of operation

  • Building a strategy to enable biology driven clinical and pre-clinical research. Tissue sampling, biobanking and sharing tissue across boundaries, training for clinicians, researchers and scientist. Long term sustainability of encca is bringing together national paed and cross cutting research groups to take it forward.

Why has overall mortality for children with neuroblastoma in the UK worsened?  Is it because there’s no trial currently open?

Infants with cancer have the highest rate of early mortality. Can we improve their model of care?

Equal access across Europe. Appointed by DG-SANCO to pilot how cross-border research can be done correctly?

Collaboration, defining entities, regulatory, embedding teaching and research.

~~~~~~~~~~~~~~~~~~
Tony Moran
Public Health England
Survival trends for young patients in the UK – the good and the bad diagnosis

Background
Lower survival in UK than several other countries
Rate of improvement slower in TYA than other age groups?

[Once the presentation is available, I’ll upload it here]

~~~~~~~~~~~~~~~~~~
Kathryn O’Hara
The Christie NHS Foundation Trust
Referral to and from specialist Centres- how widespread is the practice?

Presentation

Normal for 0-14 year olds to be under the principle treatment centres classified by extent of shared care. It’s not consistent in all areas.

~~~~~~~~~~~~~~~~~~

Plenary 2 – Living with and beyond cancer
Heather Monteverde
GM of Northern Ireland with Macmillan Cancer

Presentation

Considering living with and beyond cancer is a newly adopted consideration… relatively. So many changes within cancer with chemo, radiotherapy, surgery etc.

Consequences of treatment or late affects have a huge impact on the quality of life of people living with and beyond a cancer diagnosis. This also needs to be addressed. The physical as well as the emotional and psychosocial issues.

~~~~~~~~~~~~~~~~~~
Raoul Reulen
Uni of Birmingham
Teenage and Young Adult Cancer Survival study

Approx 225,000 5-yr survivors
Population based cohort
Diagnosed 1971-2006
Age 15-39
Covers England and Wales

Study link

~~~~~~~~~~~~~~~~~~

Matthew Francis
Public Health England, Knowledge and Intelligence Team, West Midlands
Method of identifying stage IV cancer

Presentation – please refer for charts and graphs.

Matthew spoke about the differences in staging sarcoma compared to other cancers.  The usual methods of staging include tumour size, nodal involvement and if there are any distant metastases identified.

With reference to sarcoma patients only 2% of those diagnosed with stage IV actually comply with these staging rules.  This makes it increasingly difficult to make comparisons and potentially contribute to a less favourable outcome.

In addition the rarity of sarcoma:
450 bone sarcomas new diagnosis
2,800 soft tissue sarcoma new diagnosis
less than 1% of malignancy
occur in different anatomical locations.

Detailed staging data is not available for patients with sarcoma.

Metastases site recording in HES can be the only identifier but this information isn’t always recorded.

4,602 new cases of bone sarcoma
20% of had metastases at diagnosis
27,913 soft tissue sarcoma between 2000-2010
3,602 13% had metastases

Soft tissue sarcoma – some sites have space for growth i.e. abdominal or breast where the tumours have space to grow and therefore not diagnosed as quickly i.e. may be identified at diagnosis with metastases.

Conclusions
Staging data for sarcoma is incomplete.
Those with metastases have significantly poorer outcomes.
The methodology used to identify stage IV sarcoma patients could be applied to other cancer data sites and assist the National Cancer Registration Service.

~~~~~~~~~~~~~~~~~~
Chris Brown
National Cancer Registry Ireland
Using routine prescribing data to identify comorbidities in ovarian cancer patients

Presentation

Please refer to the slides and data of the presentation.

~~~~~~~~~~~~~~~~~~

Plenary 2 – “Show me the data!” – information and intelligence for your ovarian cancer service

Chair: Annwen Jones
Target Ovarian Cancer

Presentation

Ovarian cancer outcomes could be improved. NCIN has provided hard evidence that outcomes can improve and also provided data and insights to shape policy and practice.
7,000 cases diagnosed each year
3/4 of cases aged 55 years and over
4th most common cause of death from cancer in women
4,300 women die each year
Late diagnosis is a major issue

Before 2007 (i.e. before NCIN) we had very little and incomplete data that was also unreliable.

32% of women diagnosed with ovarian cancer via admission to A&E v 24% of all cancers
15% of women die within two months of diagnosis.

Pathfinder Study – Target Ovarian Cancer – 2009, 2012, 2015… ongoing study.
Looks at patient delay, GP delay and system delay.

[Key findings published to date click here]

International benchmarking partnership (ICBP):
1 yr survival for ovarian cancer in England lags behind comparable countries
5 year survival difference results from 1 year difference. In England we do quite well at this point.

Data shows that there are wide regional differences in survival.

What is the underlying cause of variation and what more can we do to improve survival for all women with ovarian cancer? What does the data intelligence that we currently have tell us? What further data do we need?

Put patients at the heart… policymakers, patient organisations, commissioners and clinicians around patients.  The patient must be central.

Screen Shot 2014-08-18 at 13.14.34

The value of data to patient organisations:
Policy – impossible to influence policy without robust data.
Charity – we have to make sure that we’re spending the donations wisely. Data helps make decisions and priorities as a charity.
Patient choice – patients with a voice.  Personal note – it was wonderful to see the faces of patients on Annwen’s slide particularly that of my gorgeous smiling friend, Tish, who I miss so very much.  Tish was such a wonderful patient advocate for Target and others diagnosed with ovarian cancer.

~~~~~~~~~~~~~~~~~~
Dr Andy Nordin
Chair NCIN Gynaecological Cancer site specific clinical reference group
Ovarian caner in the UK: the emerging picture

ICBP – opportunity to compare outcomes with other high quality data countries such as Australia, Cancer, Denmark, Norway, Sweden 1996-2007

Gynae cancer hub with NCIN run through of projects carried out.

Results are improving in younger women but data identified that it hasn’t improved in the older patients. NCIN were then able to look at this area too.

Routes to Diagnosis in November 2010 we all know was that a great many people present as emergency presentation… ovarian is one that indicates this highly.

Short term ovarian case mortality:

  • why the elderly
  • late presentation
  • reluctance for referral
  • performance status
  • patient preference
  • access to specialist surgery
  • access to chemo
  • national variation

There needs to be more specialisation at a surgical level.  To look at the number of consultants by caseload and acknowledge that they should be doing more than 15 cases per year.  This surgery should NOT be undertaken by general surgeons but by specialist surgeons in specialist centres.

More use should be made of the cancer e-atlas

~~~~~~~~~~~~~~~~~~
Jason Poole
Associate Director, Public Health England
Short term ovarian cancer mortality in and across England

ICBP
Early results 2006-2009:
5288 women 31% died in the first year
2,592 died in first 2 months

3 contributory factors:
emergency presentation
advanced age
non-specific tumour morphology

case-mix analyses

  • women 2008-2010 resident in England, ages 15-99
  • data from national cancer data repository
  • HES inpatent and outpaitient
  • Ovarian cancer including fallopian tube and primary peritoneal cancers
  • Excl borderline tumours, sarcoma, germ cell tumours
  • 15,000 women in analysis

Patient outcome – excess mortality ie over and above ‘normal’ population mortality
3 periods of analysis – diagnosis to 1m, 1mto 6m; 6-12m

case mix factors

  • age groups
  • deprivation quintile
  • comorbidity
  • route to diagnosis
  • stage
  • morphology
  • treatment
  • basis of diagnosis

~~~~~~~~~~~~~~~~~~
Dr Rob Gornall
Clinical Director Cancer Services
The challenge of improving cancer services by commissioning pathways – the increasing value of data

Presentation

Rob’s presentation reiterated a great many of the points earlier regarding early diagnosis, variation in primary and secondary care services, complex commissioning pathways, patient behaviour and perception of risk.

Please refer to the presentation for more data on the above but please note there are graphic photographs.

~~~~~~~~~~~~~~~~~~
Louise Bayne
CEO Ovacome
Robust data – the value to patients and patient organisations of the NCIN

Why is the NCIN data required and quality of it so important?:

  • demographically representative
  • statistically significant sample size
  • non biased enquiry motive
  • highly skilled practitioners
  • published in full

Without NCIN data, charities need to look inwards for data sources and information. That has intrinsic problems about it.  Attract a sub-set of the cancer community who are not representative. Might be questionable motives as to why a charity has come up with a news story or report.

Why does this matter?

Data is used for:

  • NICE decisions on access of treatments.
  • shaping research proposals
  • commissioning
  • advocacy programs
  • patient information
  • individual treatment choice

Without excellent data patient organisation activities risk being characterised as:

  • opinion drive
  • biased
  • questionable motives

Leading to:

  • wasted resources
  • lobby fatigue
  • harm to misrepresented clinical sectors
  • poorer outcomes for community

Making the data count

  • Quality profiles – annual report using NCIN/DH data to provide a local picture of service/standards
  • Available on the Ovacome website
  • Parliamentary outreach day with Ovacome members lobbying their MPs
  • Circumvents clinical gagging clauses
  • Puts clinicians in the driving seat – we don’t say what’s to happen – clinical empowered to suggest improvements
  • Last year resulted in Secretary of State intervention, improvements to the data collection, the recruitment of clinical staff and improvements in clinical service (in one centre the development of a GP helpline)

The drive to improve diagnosis:

  • the majority of women have advanced stage disease at diagnosis
  • received wisdom – ovarian cancer is a silent killler – only symptomatic at advanced stage

But the studies said differently….

Using data for improving diagnosis:
BEAT campaign Bloating Eating Abdominal Talking.

Survivors teaching students

Commissioning – why NCIN is now essential
Commissioning challenges us to consider business as usual or optimal practice
To drive improvement trustworthy data is essential
However gaps in data remain a challenge

 

PPI Group – Imperial/Cancer Research – Meeting

A fascinating meeting this evening of the Patient and Public Involvement Group from Imperial College and Cancer Research.

We meet regularly however often we discuss aspects that I’m unable to share with you so I don’t post a blog entry about every meeting.  However some of the tweets/facebook posts about upcoming events or opinion may be posted from Living Beyond Diagnosis accounts.

Tonight’s meeting was slightly different to our usual discussions.  In that many of the agenda items related to artistic and creative projects that it is hoped will support, aid and influence both patients and the public.

I am unable to go into the finer detail but wanted to share a little about the items and ask for your feedback.

Artwork in hospitals and cancer clinics.  An artist has been commissioned to produce some artwork for display in a very busy hospital cancer clinic.  Tonight he was able to share with us a few of his ideas of what he would like to produce and also to hear our feedback and comments on the proposed work.  His medium is ceramics and his aim is for the artwork to be uplifting for patients, intriguing and engaging for those who may visit the clinic often and perhaps to also be further dimensional to include some more medical references and in particular research and cells.

No mean feat ahead of this chap.

What a wonderful project… for him to create and of course for others to enjoy.

The discussions this evening were varied.  Some were very much for it being engaging and uplifting.  Some felt that if it had medical references to research and cells it may be too much in this clinic but others thought it may bring about discussion and hope.  We discussed where it should be placed.. or perhaps could it transcend both the reception desk and surrounding walls?  Perhaps to include some clever lighting?  There are many considerations and much planning to also ensure that no matter where you sit or walk within the clinic you can enjoy the artwork.

What would be your considerations?

Video Project.  We were presented with a video project that has been taking place over the past 6 months.  Video cameras were given to 9 women who had been diagnosed with breast cancer (some with secondary breast cancer).  Each women was asked simply to record whatever they liked.  Some did a ‘talking heads’ approach of short interviews to camera; others were determined to show their families and life living WITH cancer; most of them showed bad times as well as the good; living with side effects; what the treatment and drug regime was like; and so much more.

The videos have been sensitively edited (with each of the women involved) and the task of how best to use the honest and open footage to educate the public and also support and inform others diagnosed.

The aim is that it will become part of an art installation where each video is played continuously on 9 walls of a gallery.  Thereby giving the ‘viewer’ the opportunity to watch all or part of each journey.

It is also hoped to edit the footage (approximately 2hrs for each lady) down to a documentary length and to be able to get it onto the TV.

We also discussed the possibility of some of it being used for the training of people working with cancer patients.  Medical professionals but also HR/employers.  Perhaps in a similar way to the GP Training film that I was involved in that is now part of the London Deanery GP training.

Where else do you think this could be used?

I suggested that in addition to the current footage perhaps another video project might be looking at the 360* surrounding the diagnosed.  For example taking a point in time of the diagnosis (perhaps being told of cancer, the start of treatment, surgery dates etc) and asking the diagnosed to tell what that moment was like as well as their colleague, husband/wife, child, parent, neighbour, friend etc etc.  To demonstrate that cancer affects much more than the individual and allowing others to understand.

Portrait Project.  A fascinating project created and considered by a lady herself diagnosed with secondary breast cancer and recently told that she is now in palliative stages.  Her background is in visual media and she would like to share her journey through photographs.  HOWEVER not of herself but highlighting the wonderful team of medical professionals that have been part of her journey, have been keeping her alive and indeed for whom she is truly grateful.  She would like to say thank you and for others to know that a cancer patient’s journey is filled with teams of professionals who work together for the best outcome.

She has put together a team of photographers, videographers, editors and other talented people who will be responsible for capturing each and everyone who’s been involved in ‘keeping her alive’.  From the nurses, breast consultant, sarcoma consultant, oncologist, heart specialist, plastic surgeon, wig fitter, receptionist, cleaner, anesthetist etc etc.  They are asked (and with her guidance) that each portrait will show the person behind the white coat as well as acknowledge the work they have done.

It is aimed that this portrait project will be finished and on display in SW London in September of this year.

Tissue Collection.  At this point, I can’t tell you everything about this agenda item.  However I would like your opinion please.

A great deal of cancer research is carried out on tissue samples taken from patients via a biopsy or surgical excision.  Sadly not everyone knows how to donate tissue to research projects and, historically, consultants are concerned about having discussions about research with patients so this may be overlooked.

My question to you is at what point and with whom do you think you should have a discussion about tissue collection for research purposes?  Was it discussed with you?  How did you feel about it?

Are you aware that cancer cells change during a cancer ‘journey’ and particularly if it spreads to other parts of the body.  There is therefore huge value in tissue samples being examined from each part of the body affected and indeed researchers feel that this information will help guide to the best outcome for individual treatment.

Another taboo that needs to also be overcome (in my opinion) is that of tissue donation after death.  Researchers again have huge value in looking at the tissue of a deceased patient.  If they are able to compare the tissue with that taken from a primary tumour and again any secondary tumours, they believe this may also aid them in understanding cancer development and further treatments.

Would you give your specific consent to tissue sample being taken after you death?  When and how do you think it should be discussed?

Breast Cancer Lecture Series.  There next in the series – “The Secondary Breast Clinical Nurse Specialist: her role in breast cancer patient care.  6-7pm 15th July at Maggie’s Centre, Charing Cross Hospital.

These lectures are in an informal setting and after the talk you are invited, and encouraged, to ask questions of the speaker.  Please do pass on the invitation to others.  If you’re interested in attending please email Kelly Gleason k.gleason@imperial.ac.uk as places are limited to approximately 20 people.

I’d love to hear from you about any of the points above.