Finally I can breathe a sigh of relief, I’ve got the results of this six-monthly ‘active monitoring’ scans.
Nothing suspicious! Yipppeeee!
Next ultrasound and chest x-ray booked for January. (Mammogram is my annual summer treat!).
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…
Eeek the Agenda has been published for the annual Clinfield Conference for Clinical Research Staff.
Guess who’s speaking and part of the panel debate? Meeee….
“11:45-13:00 The Great Debate: Should we use social media to recruit patients in clinical research?
Chair: Gordon Hill Debaters: Teresa Chinn- We Nurses, Anna Wallace- patient representative, Les Gelling- Ethics Chair”
As always it will give me the ability to mention ‘Phyllodes’ and this occasion to a room full of people at the coalface of clinical research.
As you will all know from this website social media has played a huge part in my finding other people diagnosed with Phyllodes; sharing experiences and supporting one another; researching medical/scientific papers and sharing them with the group; discovering clinical trials around the world and again sharing them with the group; and so much more.
I know that when we’ve discussed clinical trials and research within social media, the thirst for knowledge, how to sign up and get involved and interest in any results and findings from group members is enormous.
Using social media as a way to recruit patients into clinical research is a no-brainer. It should also be used to educate and inform patients on what research is; what and how you could be involved; why it’s important for medical advancement for you and others; etc.
My ‘journey’ would have been a very different one had social media not played a part.
I’d love to hear your comments.
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?
Today in the sunnier climate of San Diego, California the amazing Trisha will marry her best friend and soul mate, Rissa.
I’ve loved watching excerpts their relationship together being played out on social media. Rarely are they ‘sensible’ posts but insights into lives filled with love and laughter. Hula hooping sessions in supermarkets; photos of them both wearing crazy outfits; ‘secret’ videos made of one of them singing or talking to themselves; and also bonkers videos and photos of their beautiful dogs. There’s a simple beauty and lessons to be learnt from loving life so very much and sharing it with someone who just ‘gets it’. Trish’s posts never fail to amuse me (and I’m sure the many other friends she has on Facebook, Twitter and Instagram).
I discovered Trish via the new fangled internet and at a time when I had no information about the cancer I was diagnosed with. I knew no-one, there was no support group I could attend and my calls to ‘cancer support lines’ at Macmillan and other organisations led to responses such as ‘we’ve never heard of Phyllodes‘, ‘we have no information‘, ‘have you tried ??‘ etc. But always with a warning NOT to turn to the internet as I might find things that are untrue.
Ha, I laughed in the face of this warning… and it turned out to be the best thing I’d ever done! I found Trish… who then scooped me up and introduced me to her friends and the Facebook support groups.
“Trish posted a message on her Facebook wall which just goes to prove that there are angels alive and amongst us:
…ATTN: My fellow phyllodes friends – request Anna Wallace on my friends list,she’s brand new and recently diagnosed with a malignant phyllodes tumor and needs our support! Let’s show her how beating breast cancer is done! WONDER TWIN POWERS ACTIVATE!”
It was literally moments before Andi messaged me and minutes before many others did too. I can’t express how pivotal this contact was for me in my journey and how despite only knowing these ladies for a few years, they are some of my closest friends. I also loved meeting them in Atlanta and Orlando and giving them GoAnna hugs It’s always such a joy when we get in touch via social media, Skype, Facetime or cards in the mail.
I’m only sorry that I’m not able, due to other commitments including my scans yesterday, to be at the wedding in San Deigo today. I will, of course, be there in spirit and can’t wait to hear all about the day. No doubt we will also be viewing some crazy videos and hearing daft quotes too.
Congratulations Trisha and Rissa… Wishing you an incredible wedding day today and a life together overflowing with love and laughter. xxxx
I know many people would give their right arm (and probably a leg too) to be able to record at Abbey Road. So it’s an absolute honour to find our Rock Choir back in Abbey Road Studios for a second year.
Jim has worked tirelessly to make the arrangements, coordinate arrangements, calculate costs, chase payments, engage producers, engineers, photographers and, of course, book Abbey Road Studios etc. In addition he’s worked one-2-one with the soloists to perfect each of their performances, run extra choir rehearsals and drilled us in ‘torture’ sessions so that our timing, pitch, intonation and musical accents were perfect. Thank you Jim for being ever patient and so generous of your energy, expertise, spirit and time.
As with last year’s recording session we concentrated on one main song. This year our Choir chose ‘Proud’. The soloist for Wimbledon Choir was Natalie who I think you’ll agree, pun intended, has done us ‘Proud’.
Sarcoma UK are today holding their first Voices event. ‘Changing the landscape for sarcoma’ AKA The Big Conversation.
An early start for me to travel from London to Birmingham for a 9am start. Eeek that’s a time of day I try to avoid and I can report that the only others I spotted as I ventured to the tube line was 1 dog walker, 1 jogger and the binmen!
If I’m honest, I wasn’t sure what to expect from today. I’ll do my best below to summarise for you.
9-10am – Registration. I was very pleased to see some familiar faces and be able to catch up with them, find out how they are, what’s happening in their lives and receive/give a few hugs too! I so value the camaraderie between patients, carers and patient/carer advocates. The positive actions of each person attending and sadly often news of those who have passed away.
10-13:00 – The Current Landscape for Sarcoma
Welcome – Lindsey Bennister and Roger Wilson
I have attached links to the presentations given however have also added a few of the notes/highlights that I wrote down during the day.
Key challenges in sarcoma – Presentation 1 – Professor Rob Grimer, Professor of Orthopaedic Oncology at Royal Orthopaedic Hospital Birmingham; Sarcoma UK trustee
As reported in the Mail newspaper – 1 in 4 cancers are missed or misdiagnosed in the UK. However the headline they omitted was – 90% of sarcomas are missed or misdiagnosed in the UK.
1% of radiotherapy patients may get a radio-induced osteosarcoma in later life.
85% of people with 4 of the following ‘signs’ will be a sarcoma:
– lump larger than 5cm
– increasing in size
– deed to the deep fascia
– any recurrence of a previously excised lump.
Only 15% of sarcoma patients make it onto the 2 week wait rule.
Average time that people live with symptoms BEFORE visiting a doctor for sarcoma is 1.5 years.
Shocking results that younger people don’t tell their parents/teachers/friends about lumps until they have to! Speak out about lumps – the earliest they are diagnosed they can be excised and treated.
Rob also spoke about a campaign that was carried out with GPs and golf balls. The premise was to alert GPs that any lump bigger than a golf ball (42mm) should have a diagnosis at a specialist sarcoma centre. Help spread the word!
The sarcoma patient experience (findings from the National Cancer Patient Experience Survey) – Presentation 2 – Reg Race, Quality Health
Reg talked about the changes that have been influenced by the National Cancer Patient Experience Survey and some of the information that was highlighted by the results. For the most part the attached presentation slides are self-explanatory but the main highlights were:
Patients with a named cancer nurse specialist have a better prognosis. We need to ensure that within the NHS CNSs are available to all.
Did you know you were entitled to free prescriptions when undergoing treatment for cancer? Most don’t but the difference in cost to a patient can be crucial to them keeping up with the drug treatment.
Not enough information about sarcoma available AND given to patients. How can we improve this?
Sarcoma patients fare badly in referral and diagnosis times. More awareness needs to be made to the public but also referral routes for the professionals.
There is still a large (unresourced) quantity of emotional and psychological aspects to a sarcoma diagnosis.
Education for the younger population to be ‘body aware’, open to speak with adults about concerns and to report lumps and bumps when they first are noticed.
Some improvements have been made and we, collectively, need to continue to get changes made.
NHS sarcoma services: how are sarcoma services set up in the new NHS? – Presentation 3 – Professor Jeremy Whelan, Professor of Cancer Medicine & Consultant Medical Oncologist at The London Sarcoma Service, University College Hospital; Chair of the Sarcoma Clinical Reference Group
This presentation (see attached) shows in detail the structure (as it stands today) for the NHS within the new ‘world’. This may well change. However it’s clear from the slides that it’s complex, there are a great deal of aspects to consider and there are voices much louder than the sarcoma and rare cancer ones. We need to ensure that we are not forgotten. That our pathway is as robust as that of other more common illnesses.
Maximising the voice of sarcoma patients and carers in changing the current landscape – Presentation 4 – Derek Stewart OBE, Chair of Throat Cancer Foundation; Associate Director for Involvement in National Institute for Health Research, Clinical Research Network UK
Derek, as always, gave a truly engaging presentation. Derek spoke about the importance and value of the patient/carer voice. The various places that you can be involved and the level of involvement that you may wish to offer. There is much more available than there ever was and don’t be put off and assume it will become a full time job! Some committees and boards only meet twice a year. Others more often. Some roles can be done by email or online feedback and others require you to attend offices. Some simply by speaking about sarcoma or offering to drop in leaflets to local medical facilities.
The important message however is that no matter how you are involved, your voice is crucial to ensuring improvement and changes for the sarcoma landscape.
14-16:15 – Changing the Landscape for Sarcoma
There were four workshops arranged for the afternoon and we were each asked prior to attending the day to choose two to attend.
Supporting others/protecting yourself – practice techniques – Jo Ham
I had chosen this session as I have, within the past 4 years, supported others, spoken at events and participated in conferences without thinking about the impact it has on me. Of course I’m happy to give of myself whenever asked however often ‘retelling’ my story or delving into my experience can take me back to a place I never wanted to return. Supporting others I’d like to be better at, listening without offering answers or advice is something that I know I can improve upon. Lastly, loss. Losing friends to cancer, whether they be people I’ve known for years or know because of my diagnosis, is incredibly tough. Learning how to manage those emotions but not to switch off and stop feeling is also something I’m aware of needing.
Jo Ham, the facilitator for this session started by turning the workshop heading on it’s head. She explained that we should protect ourselves BEFORE helping others. A little like the oxygen masks on a plane – fix your own before helping anyone else!
Jo explained some techniques to protect yourself relating to anxiety, relaxation and breathing. Noticing anxiety appearing and how to take control of it. The A-W-A-R-E technique: Accept the anxiety; Watch the anxiety; Act with the anxiety; Repeat the above steps; Expect the best.
She explained about Dr Siegal’s hand model of the brain and how to use it effectively. Here’s a great clip
Breathing into the diaphragm and counting… in for 7 and out for 11. The 7/11 technique.
Below is a picture with a couple of the exercise notes. You should be able to click on the picture to enlarge and read.
A very useful workshop but indeed way too short in time to really be effective. Many of the exercises and principles were similar to ones I’ve learnt at Penny Brohn Cancer Caring Centre in Bristol. I was pleased when another workshop attendee suggested that people should get in touch with Penny Brohn and attend a Living Well course. Within my feedback and a conversation with Lindsey Bennister, I also suggested a collaborative event with Penny Brohn to host a Living Well course.
The power of your personal story: how to tell your story to raise awareness and bring about change – Graham Bound
Graham’s introduction to this workshop was to tell us about his experience with sharing his story, raising awareness for Sarcoma UK and the profile of Sarcoma generally. His background is as a writer (http://www.penguin-news.com/index.php/component/flexicontent/23-features/25-a-stange-sense-of-bereavement-by-graham-bound) and therefore has experience of dealing with written publications and telling your story. Graham explained his ‘journey’ and how valued a patient/carer experience is in so many ways. He spoke about how to write or be interviewed for a piece, the pros and cons, pitfalls and tips and tricks.
The main point was to ensure that we not only mention cancer but our types of rare cancer, Sarcoma and the charity Sarcoma UK in as many appropriate places as possible.
Graham’s account was very insightful, from the point of someone who has used the written word to speak about his experience and raise awareness. I wonder though if this workshop should be co-hosted by a media professional who can provide small vignettes and tips and tricks to work with the media – TV, radio and written word.
Final Plenary – Lindsey Bennister and Roger Wilson
I don’t think I was alone in wondering where the day had gone. Seriously it had flown by in what seems like minutes. The closing plenary reflected the same.
A wonderful day, too short in time, lots covered and lots to take forward to making it an annual event. Clearly it was a valued day by so many people. People at differing stages of their experiences and journeys and I hope one where all attendees came away with ‘action points’, clarification and new friends. I also hope the ‘professionals’ present also learnt from their day with patients/carers.
Visiting the Royal Marsden today. Always love that they have a wing named the ‘Wallace Wing’.
I’m loitering in the waiting room and it slowly empties… I’m still sat there. Eventually it was only myself and one other lady waiting to see a consultant. Even the receptionists had gone home!
My appointment was second to last… I waved at the other lady as I went in and we laughed!
My consultant was lovely. She said that there was nothing to worry about on either my chest x-ray nor the ultrasound results. I’m signed off from scans for another 6 months, whoohoo.
She asked about my general health and I mentioned the headaches. I told her that the neurologist had said it must be the menopause. Haha she asked instantly how young the male consultant was! Anyway after a brief conversation about them, about MRIs, symptoms and tests, she said I should head back to the GP to investigate further. She was adamant that it would be unusual at my age to be menopause related… but perhaps. Sadly I was asked again when Mum started her menopause – usually the pattern follows mother -> daughter. Sad because I don’t know and Sad because I can’t ask her.
Great news about the scans though.
PATIENT INVOLVEMENT IN CLINICAL RESEARCH
Derek Stewart, OBE Associate Director for Involvement at National Institute for Health Research – Clinical Research Network, England
Public Involvement in clinical research
Improving Research – Involving patients, carers and the public
“Whilst you have your voices, use them and use them to effect.”
I’m not a researcher, a doctor, etc but that shouldn’t stop us getting involved in research. We don’t need to know what they do but we need to sometimes tell them what we see. It is our job to bring the professionals back to earth. Never think you need knowledge, a university degree, particular skills… all of us can get involved in research.
From patient … to advocate, activist, ambassador and associate
Why is it important for SPAEN?
Your Patient and Carer EXPERIENCE is of VALUE
Gold dust to researcher… they can work on it forever more. YOU have knowledge.
Did you know about cancer before you got it?
Your knowledge is fantastic.
You still have questions that are unanswered. How do I get those answers? That’s research.
Our bodies. When they ask us to get involved. It’s our bodies. We should have a say in that. It is our DNA what happens in it, what happens in genetics we should be able to speak about.
It’s our money £££$$$$. The charities are not the funders of research… it’s our money given to them directly or via taxes. Never forget it.
How can we make a difference?
Inform -> Form -> Influence
Inform – your experience can help. Tell them what happened but remember that sometimes researchers live in a little bubble and think that their idea is the best ever. They need the experience to understand… that’s us. We can work with them to learn and influence to improve the system and the policies.
Consultation -> Partnership -> Patient centred culture (bring fresh air to open the doors and windows)
Clinical Research Network in England. Supports the infrastructure in England Funding an integrated Clinical Research Network.
Supports Involvement of Patients, Carers and Public involvement
£3m put into it. 1,200 patients.
It is 70 days from accepting the trial to the first patient involvement.
A Movement for Change
Fight for Sarcoma, GIST and Desmoid. Bang that drum at all times.
Are we making a difference?
Context – purpose – impact and benefit.
When we first got involved the British Medical Journal wrote an article about patients getting involved in research about patients being aliens at the table.
View from the Top
Dame Sally Davies – “No matter how complicated the research, or how brilliant the researcher, patients and the public always offer unique, invaluable insights. Their advice when designing, implementing and evaluating research invariably makes studies more effective, more credible and often more cost efficient as well.”
Signpost people to consent form, finding out information, exploring impact. Learn the language of trials. Do not give up…
When patients are present, we make a difference.
Q – we are trying to involve Europe wide in clinical trials. One more problem is that European Clinical Trials Register is not suitable for giving information to patients as it’s not accurate or complete.
A – It’s why we need to be at the table and keep doing this. Danger in Europe from some drug companies fighting against open access. We mustn’t do solely fight for one cancer against another disease… we keep on.
Q – Inspiring presentation. Positive energy thank you. How do I respond to my Dr that once I have mentioned that I am participating in a patient group, they close all the doors and windows?
A – Only tip I can give you is try to find another Dr in the area, another clinician, another group…. Because when your Dr hears you are talking to them, they often think ‘I should be doing that too’. Often Derek asks ‘what are the problems you’re facing and how can I help?’. Ask them about why they get involved, what their passions are etc… build a rapport.
Q – We have the opportunity to create a patient group in bone sarcomas. Do you have the experience and wish to be involved?
Q – What would you say are the three main points to get involved?
– Knock on the door.. if you can’t get through the door, go through the window.
– Never feel that you haven’t got a right to be there.
– Keep a simple diary, a few notes about what it felt like not knowing. We need to remember what it’s like for someone starting out. “I walked ½ way round the lake but was too tired, so walked all the way back”. As you know as you learn you improve… remember what it’s like at the start.
Markus Wartenberg, SPAEN, Germany
Practical experiences and examples from patient organisations
Patients Involvement in Cancer Clinical Research.
When we look to our experience as patient groups.
Cancer patients 6-12% of cancer patients are participating in clinical trials.
This leads to delay in knowledge/innovations, slower progress etc.
Trials and Endpoints?
Often it’s a ‘game’ against time…
Trials and Treatments?
Big issue at the moment is we need future options. We need better treatments for the future. But at the moment we also see that we are not able to get the best out the therapy. We need innovations but also need to be involved with the industry and experts to get the best out of the treatments at the moment.
Each patient is unique. There is no THE patient. The obvious differences, gender, age, ethnicity etc but so much more!
Patients who are going into clinical trials. They have an emotional overload as they enter the trials. Fear, shock, hope life death, new territory, confused, depression, anger, need support, options expectations.
Patients have physical aspects: Family commitments, work commitments, side effects, job career, fatigue etc.
Cognitive Aspects; regarding cancer but also for the trials. A new area to learn about.
What’s the role of patient organisations in clinical trials:
Dialogue with the Customers!
Patients are the customer… previously it was always the doctor… needs are changing
Partnership: Translate From/To The Patient/Customer
Physicians/Researchers <–> Patient Group <–> Researching Industry
Other players in the room – research organisations, regulators, HTA, payers etc.
Patients/Patient advocacy groups have a lot to offer
Clinical Trials’ offer some collaborate fields
Information access, design/quality and recruitment.
BASICS OF STRATEGIC PLANNING FOR PATIENT GROUPS
Markus Wartenberg, SPAEN, German and Lindsey Bennister, Sarcoma UK
Lecture: The basics of strategic planning and practical experiences from a patient group
Strategic planning is an important part of business skills for patient groups. Idea of session is introduction to the topic…
Questions to consider:
What about shared vision?
Often people have a difference expectation and view of what is needed or required. You need to find a common shared vision.
A lot of areas in modern life are using ‘strategies’
What about patient organisations and non-profit organisations… makes sense to use strategies.
What is a strategy?
Your team! Your goal! Your proceeding? What Questions? How do you do it?
We have to think about the process and plan. Discuss and build up a strategy and planning process to get there.
What is Strategic Planning?
A systematic process of envisioning a desired future, and translating this vision into roadly defined goals or objectives and a sequence of steps to achieve them.
A systematic approach through which an organisation agrees on the priorities that are essential to its mission and responsive to its environment.
What is strategic planning NOT…
Hope is NOT a strategy.
Benefits of Strategic Planning.
Some thoughts for the process
The big 5 for strategic planning:
Remember if strategies get too detailed, you are moving away fro m strategic planning and into annual operational planning.
What are strengths and weaknesses of organisation. Opportunities, threats etc facing us. This will help with key priorities and process.
Strengths and weaknesses
Resources or strengths that help us to accomplish our mission or mandate or create value for our members (and their patients).
Internal weaknesses are deficiencies in resources or capabilities that hinder us to accomplish our mission or mandate or create value for our members (and their patients).
Opportunities and threats
These are the external factors to the organisation.
Are there new programme areas where you should be new, new funding, community collaborations, regulations, government, economy dependencies etc.
External opportunities are primarily outside factors or situations that we can take advance of to better fulfil our mission or mandate or create.
External threats or challenges
SWOT and other tools
Identify the current environment and will inform your plan. You need to understand what is going on with your environment otherwise you will l have problems about reaching the goal and implementing the strategy.
Screen external relations. Who are the people the organisation are working with? Medical experts, Industry, payers, regulators etc.
What are the main stakeholders the organisation is dealing with. What are their roles, influences, interests, expectations? Are they target groups/audiences for future actions?
But also collection of available data? Do you know everything, have information on target groups, how do they behave etc. About environment and perhaps legal influencers in anyway. Do you know what the needs and expectation of your patients and carers really are?
To complete ‘your picture’ you can also initiate surveys, interviews focus groups etc.
All required to build your strategy for the future.
Lindsey Bennister, Sarcoma UK
Transforming the landscape for sarcoma
Sarcoma UK’s Goals and Strategy 2014-2020
“If you don’t know what you’re going to do, you can’t know that you’ve made an impact”
Lindsay summarised further the importance of planning and strategising that Markus had referred to in his presentation.
Dr Rachel Brindley (Clinical Psychologist) and Elaine Stewart (Cancer Support Specialist), London Maggie’s Cancer Centre
Morning Talk – What to do when treatment comes to an end? – Practical, emotional and psychological issues
What’s it like to be facing this diagnosis in your country?
What are the challenges?
What are the supports?
What are the main psychological issues that people with advanced disease face?
Ripple effect of cancer:
Medical – treatment effects, nutritional needs, physical
Quality of life – Sleep, leisure activity, shopping, socialising (eg meals)
Relationships – Changing roles, sexuality…
Difficult emotions – Low mood, anxiety, guilt, shame, anger (at disease, at family at God)
Self Image – Body image, self-esteem, confidence
Existential–Spiritual – Meaning of life, create a legacy, purpose…
Financial/Legal – Work status, holiday insurance…
Q – Psychological support to the physicians?
A – It’s also a burden on the clinicians and medical team. Is this why they’re not best to share bad news.
Fears and questions about death and dying?
What are some of the fears?
What do people want to know?
What is it like talking about these?
Can be victims of complementary and alternative therapy?
Italian Dr shared a story – Shocked on his very first day of work in new role in LA, he was taken into patient’s room. Colleague starts talking.. in next few hours/days explains respiratory and cardiac arrest is near. We can resuscitate and will only delay a few days. Shocked about how brutal they were with the patient.
In Italy the percentage of patients with this kind of information is only 1% or less that are given details about death and dying. In Italy many patients don’t want to know they are going to die. Physicians problems start much earlier than this point.
Very individual choice about knowing what is going on.. time to clear things, discuss with relatives, friends etc think about funeral and future of family.
Patient choice… has to be a sensitive and individual choice by patient.
When do you discuss?
Again very individual to find the time to discuss. Discuss in part. Listen to learn what the other person needs to hear.
Fears about death and dying
Fears about dying:
1. Fear of the process of dying
2. Fear of the consequences of death for loved ones
3. Existential fear of death itself
What does this mean to you?
What would be helpful for you to think about?
What resources are available to help you to plan ahead?
Stages of Grief – Kubler-Ross
Denial -> Anger -> Bargaining -> (Anxiety) -> Depression -> Acceptance
Not a case of working through but cycling back. Perhaps anxiety is missing on the diagram?
Perhaps should be ‘Not knowing’ at the beginning of diagram.
Some people may never get to the Acceptance phase but back and forth earlier on –ie they’re not able to accept death.
Perhaps include Guilt
Close involvement with people at end of life involves managing complex medical problems and working with high levels of emotional distress
Consider the impact that working with people with advanced disease may have on you and other professionals.
1. What signs would you want to be alerted to in
2. What strategies do you feel would be helpful/important in preventing and managing these?
“The heart must first pump blood to itself” – S.L. Shapiro
Support staff teams
Opportunities to debrief and reflect after difficult/distressing incidents
Opportunities to discuss what went well
Peer or individual supervision
Access to training, appropriate information
Time – to reflect on work, and for own needs
Feedback from senior management: positive, constructive
Balance between work and home life.
How might you be able to carry on some of these conversations/ideas when you get home?
ADVOCACY MARKET PLACE SESSIONS
Barbara Dore. Chair, Gist Support UK, SPAEN
How to Organise Patient Group Meetings
Think about and objectives for patient meeting.
Staff during the meeting
Announcing the meeting
Why do we do questionnaires?
Need to be quite clear about objectives for survey.
Sarcoma UK is a patient led organisation. Likes to involve patients in any initiative and involvement. Part of Information Standard process is you must involve target participants ie patients. Done by various means, feedback or through email, telephone, speak to people at support groups etc.
Clear objectives in mind when thinking about questionnaire.
Who do you want to contact? Patients? Carers
Once you’ve got data from responses what will you do with those replies? Putting the data from the questionnaire into a spreadsheet for analysis is time-consuming.
Got to have these things sorted in your mind before you start the survey process. Otherwise it may be past its use by date by the time you use the analysis.
Claire – How we’ve used our surveys. At British Sarcoma Group Conference in February we asked specifically about written information.
Asked the group in workshop (patients, clinicians and CNSs) what they thought of information (using Macmillan and Cancer Research UK’s written info). Most people said too complex and difficult to understand ie the lesson learnt use simplest terms that we can.
Negative feedback re glossaries – most people in the workshops found it difficult to flit back to glossary rather than explaining what a word means as they go along.
Survey about information and support – what info have you found? When did you receive it? Etc… so Sarcoma UK can understand what patients are experiencing and better support patients as they should be.
Collate research data. One reason why survey used?
Use methodologies and tools that have been validated academically. So that the data can be taken seriously by professional bodies (wherever possible).
One of the tools that is most readily available is the EQ5D which looks at quality of life.
Is this form truly useful for cancer/sarcoma patients?
Currently working with Royal Marsden for sarcoma patients with advanced cancer.
Claire – Example of how patients’ information can be used within gynae-sarcomas.
There is a gap of information around this type of sarcoma.
People upon diagnosis not given information… there is very little.
Sarcoma UK are developing a booklet.
They have an information review panel (both patient review panel and a professional review panel).
All information goes through the process first with the professional panel looking for inaccuracies.
Next to the patient review panel – is it easy to understand? Is it the information they want to see?
One problem we had is that there isn’t that many people we have on the information review panel with this type of sarcoma.
We put a call out to the women we knew about to invite them to be involved in the review panel.
In January we’re holding a Webinar (with Maggies) to offer information and advice to ladies with gynae-sarcomas and also to gather information about what they would like to include in the information leaflet.
The information leaflet is then due to be published early next year and will be available on the Sarcoma UK website to download.
We do get it wrong as well…
People had written all over the form and written on the back of the form. Realised they were only scratching the surface with this survey. Didn’t look at it well enough or in depth.
Hadn’t expected to also see hospital doctors lack of sarcoma information as well as GP (which had been expected).
If we’d been able to test the survey with 10 or 12 patients beforehand, Roger thinks a very different survey would have gone out.
Ended up writing a three page analysis of this survey which frankly was a load of waffle as the real conclusions had no data to support them as it was supplied anecdotally in the margins of the form rather than as answers to not very well worded questions.
Lesson – get objectives right before you start and test the questions to ensure you are asking the right questions in the right way to the right people.
Q – how would you deal with when a patient asks for privacy in answering a questionnaire.
A – Responses are anonymous. Don’t ask for other personal information that might identify someone.
If someone doesn’t want to give information… they don’t have to.
Ian Judson, The Royal Marsden Hospital UK
Marco Fiore, Istituto Nazionale Tumori Milan, Italy
Strategies for Metastasis in Sarcomas and Gist – Perspective of oncologist and surgeon
50% of people diagnosed with sarcoma will NEVER have another problem after primary treatment.
Ian Judson – Sarcoma Unit, Royal Marsden
Management of metastatic disease – soft tissue sarcoma and GIST
What are the roles of chemotherapy for soft tissue sarcomas?
Palliative treatment of advance disease. Crudely if you lump all sarcoma together the median survival isn’t great. Probably about a year.
We did a trial in the EORTC combination v single agent – the 62012 trial
Slight improvement in progression free survival but no significant improvement in overall survival.
How can we use this data?
What subtypes are particularly sensitive to chemotherapy?
Other effective agents. We use a combination of agents depending on the sarcoma type. But we’re dealing with small numbers and difficult to assess.
Hormone sensitive sarcomas
When is chemo unhelpful?
What’s the future?
Molecular biological information that we can translate into new treatment.
Some tumours, types, mutations can be difficult to treat or apply a ‘rule’.
Some progress with translocations (chromosome swapping) ie synovial sarcoma translocations
Chromosomal amplifications – ie when it copies and becomes a driver for the sarcoma.
Median survival is improving as we discover more. We have more drugs being used. Differing regimens.
Range of treatments available for treating metastatic sarcoma.
PHYLLODES – COULD BE SARCOMA OR CARCINOMA (hence confusion about where it sits in medical teams)
Marco Fiore, Instituto Nazionale Tumori Milan, Italy
Strategies for metastases in Sarcomas and GIST – A surgeon’s perspective
Looking at surgeries about how we run trials.
Conclusion should perhaps be that it is about patient choice and perhaps the studies should be addressed retrospectively in order to obtain patient randomisation. Patient choice needs to be made with sufficient information to make an informed choice.
AFTERNOON SESSION – SARCOMA TRACK
Jean Yves Blay, Centre Leon Barard Lyon, France
Update on new and ongoing trials
There are many clinical trials….
Soft tissue sarcomas
Trying to address if we should give the same treatment.
Unsolved question in soft tissue sarcoma. This is not the standard for all patients and we do not know who will or won’t benefit.
IRCI – this was the first trial in the US.. no treatment –v- combination treatment. It’s hoped it will answer the important question on this sub-type.
Phase 2 study of no treatment. Often not mentioned. This is where desmoids are not affecting other things.
Largest clinical trials are in the advanced phase:
Advanced phase – randomised trials
Only a few trials are addressing in histological sub-types.
Phase 1/11 trials
EORTC Network of Core Institutions
EORTC protocol 9010 (EudraCT number 2011-001988-52 NCT01524926)
Probably the future of what we are going to do in sarcoma.
Q – Moving much more to molecular selection of patients in clinical trials. Is the pathologist going to become more important in making the selection decisions.
A – The role of the pathologist is central. This question is debated often. How do we link pathologist to molecular biologist? Research to routine is very challenging.
We need to bring up a budget wall with people talking to each other and exchanging information. Challenging not sure. If a pathologist is a real molecular biologist you’re fortunate!
Short profiles of sarcoma subtypes
Hans Keulen, Chordoma Foundation NL
Brief introduction into Chordoma and introduction to clinical trials
What is Chordoma?
Phylum Chordata: Subphylum vertebrata
Fate of the notochord
Recent discovery is that a certain gene called Brachyury (t-box gene). Essential for development. Absence is lethal.
Notochord and brachyury
Brachyury is over expressed in chordomas and many epithelial cancers.
Brachyury is expressed in chordomas but not in other bone and cartilage tumours.
Approximately 10% of chordoma patients it is familial.
Duplication of brachyrury gene has been observed in familial chrodomas.
When you inhibit brachyury in chordoma patients you will stop it growing.
Recent discovery from UCL – www.ncbi.nlm.nih.gov/pubmed/23064415
97% of chordoma patients harbor at least one allele of the common nonsynomymous SNP rs2305089 in the brachyury gene
Research is imperative.
Benign notochordal cell tumour (BNCT)
Should anything be done at this point?
Current treatment of chordoma
First line is still surgery. Piece by piece or enbloc depending on location.
Sometimes stabilisation of the spine is required.
Radiation therapy is a high dose (usually 3x dose of breast cancer) Specialised types, mostly proton beam or carbon ion.
In the past we saw only 10% of mets. However recently mets in sacral chordoma has recently been recorded that these are as high as 30%. There is doubt if this might be due to surgery not being good enough – possibly caused by seeding.
20-20% cure rate.
Median was 6.29 years
Remarks – survival is increasing to 7-9 years, but with increased morbidity from surgery and radiation.
Chordoma vs Chondrosarcoma
Mistaken on routine histology
Epithelial v Mesenchymal origin
Much better for chrondrosarcoma (gr1)
Misdiagnosis is less common now.
Using Carbon Ion instead of Proton radiation particularly in sacral chordomas night even replace surgery as first line treatment (ECCO 2013)
Radiation before or during surgery offers promising results with respect to recurrence and seeding.
Increasing number of target identified for trials with existing drugs.
Other trials….. not just drugs
e.g. Carbon Ion vs Proton Beam radiation – HIT Heidelberg
Carbon Ion vs Proton Beam radiation – HIT Heidelberg
About Chordoma Foundation
We are a very small patient group. Worldwide we are less than Sarcoma UK!
Our mission is to improve, extend and ultimately save the lives of chordoma patients by:
Accelerating the development of more effective treatments
Helping patients across the world.
One in a million, on a mission – Chordoma Foundation
Beatrice Seddon, UCL Hospital NHS Trust UK
Gynaecological sarcomas – where are we in 2013?
Incidence of gynae sacomas
1985 – 2009 5950 gynae sarcomas diagnosed in the UK
9.2 case per million female population
285 cases diagnosed in 2009
Peak incidence 30-60 years
NCIN Gynae sarcoma report soon to be published.
Classification WHO 2003
Uterine Mesenchymal tumours *****
Smooth muscle tumours
Endometrial stromal tumours
Do not include malignant mixed Mullerian tumours
Location of tumours
85% of gynae sarcoma arise in the uterus
7% I the ovary
4% in the uterine malignancies
Sloan Kettering uterine leiomysosarcoma nomogram – overall survival probability prediction tools
Management of gynae sarcoma
Surgery – Most important component of treatment
The interdisciplinary process of diagnosis in soft tissue sarcoma
Pathologist, medical Oncologist, thoracic surgeon
Web based National Rare tumours network, radiation oncologist
Surgical oncologist Radiologist
Many specialists have routine activity with MDT team.
Weekly routine meetings with the specialists, pathologic round, clinical round and MDT outpatients.
Any deep mass OR bigger than 5cm OR increasing in size
Usually two samples.
Pathologist – new classifications WHO classification of soft tissue tumours
In common cancer they are white or black
Benign – no problem.
Malignant – diagnosis of cancer.
Within soft tissue transfer it is a scale of white, greys and black,
Benign, Intermediate aggressive tumour, (locally aggressive) or (rarely metastasizing) Malignant.
Different decision for soft tissue sarcoma diagnosis.
Soft tissue sarcomas can be diagnosed anywhere in the body and surgery on sites can be very varied yet the tumour type could be the same histology. Anatomic constraints.
First think the overall strategy:
What I can do + what the tumour can do = What I should do.
Please note, overall strategy should think in advance.
Sometimes it’s important for the surgeon to consider what to do rather than rush into it… difficult as most patients want surgery immediately but caution may in fact be best for the outcome.
Pushing tumour margins Or with infiltrative margins.
External lesions it may be better (angiosarcoma photo used) to have any chemo after surgery… that way the surgeon can see exactly where they need to perform surgery.
Functional outcome is an issue. Needs planning to ensure that particularly with arms etc that reconstruction of nerves etc is also planned to provide patient with best outcome.
Cosmetic outcome can be problematic. Such as on the head and neck. Plastic surgeon should also be consulted as part of the planning.
INT – treatment criteria
Changing over time 1987-2007
Local recurrence was improved. Survival did not change. Functional outcome and quality of life did.
One-shot approach. You need to think in advance for this strategy.
Retroperitonal soft tissue sarcoma
Probability of finding via CT scan is low.
Biopsy remains the gold standard in diagnosing sarcoma!
Julia Hill, Deputy National Programme Director, National Cancer Peer Review, UK
Peer review of quality of treatment, access to treatment and centres of excellence.
What is Peer Review?
Development of peer review
Aims of Peer Review
Key principles of Peer Review
Benefits of the Peer Review Programme
The Peer Review Methodology
Annual Self Assessment -> Internal Validation -> External verification -> Peer review visits.
Development of the measures
Expert Groups – nurses, allied health professionals, dieticians etc and also patients.
Consultation – get together to create a set of measures for the service.
Formal consultation – for approx 3 months.
Editing – meet again and edit etc.
Publication – measures reviewed on an annual basis to take into account changes in national guidelines.
Measures for Sarcoma published in August 2011 – NCAT Manual for Cancer Services – Sarcoma Measures
What makes up a peer review visit:
Look at the wider picture of how the team functions against how they’re delivering against clinical indicators.
Who are Reviewers?
MDT – service users, clinicians, AHPs, Managers and commissioners…
Peers are people who have been trained and working in the same discipline as the people they are reviewing.
We don’t have reviewers reviewing the trust next door but are objective of the pathways.
Selection Criteria for a Peer Review Visit
2012/13 Peer Review Visits
12 Sarcoma Advisory Groups
145 Trusts, 19 Diagnostic teams
Generally good provision for TYA Support for this patient group nationally
Good patient involvement overall and good examples of support
Good entry into clinical trials
Inadequate referral population
Below 100 patients
Reiterate points before, particular issue was some Self Assessment Groups do not benefit from same support as more matter NSSGs
Clinical Indicators for sarcoma were introduced in April 2013:
Working with NCIN to provide service profiles for each of our teams. Ie Cancer Service Profiles for Breast cancer Comprise of demographic data, specialist team, throughput, meeting times, practice, outcomes and recovery and Patient experience.
Outcomes of Peer Review
My Cancer Treatment – is the website that patients can then see and compare local services and check what the results are for their local hospital etc.
Click on Find out more to see the narrative of the report.
We know that not only patients are looking at the website – commissioners are also doing so.
Sarcoma UK have prepared and posted on their website a summary of the Patient Experience Survey results
SPAEN Partnerships and Collaborations
Progress in Rare Cancer Care
Collaborations and Networks
What drives us as a sarcoma specialist?
If you work on frequent cancers, do randomised trials. If you work on rare cancers – find friends..
What is EORTC
Exists for 50 years.
Important institute in Europe. Main aim is to collaborative academic research throughout Europe to improve the outcome for cancer patients.
There also groups that breaching these tumour groups such as elderly, quality of life, biomarkers etc
One family of sarcoma group.
Soft Tissue Bone Sarcoma Group
Organisation of STBSG
Group gets a scientific audit every 3 years. So we are audited on the way we behave and want to see minutes and outcome and publications and all activities. Proud to say the last audit took place this year and we ranked very high. Always hope that you will have good advisors to make it even better.
Very few later stage open studies at the moment. Working hard to get new studies active.
STRASS and CREATE studies.
World Sarcoma Network
This is a totally different institution created in 2009 by enthusiastic people in the sarcoma field. Cooperative group gathering the main reference centres to stimulate rapid clinical drug development for sarcomas.
Enable clinical studies that could not be completed by the cooperative groups or at a national and continental level. Where it needs a global level to discuss.
In Europe, in Australia Peter Mac, Ludwig Institute Australia
World Sarcoma Network the challenges
Examples of successful collaborations
With the input from all of you, there will be many more studies to come…
Jean Yves Blay, Centre Leon Barard Lyon, France
European Clinical Trials in Rare Sarcomas within an integrated translational trial network
How do we get funding for collaborative working?
Each network gets funding from different parts but how do we bring these together?
Where grants from EuroSARC came together. Tools to enable this network of networks to move in the right direction.
Some times successful in some projects but other times on our own we may be unsuccessful.
We can build something on the basis of international grants.
GOAL – EuroSARC project – Academic clinical trials with a limited number of partners but inclusive for all networks and all groups.
Interaction between clinical research <-> Translational research <-> basic research
To address major academic questions
Involve reference centres
Tod design structure and implement 9 innovative investigator driving clinical trials of different scales on a multinational level, evaluating novel
1. About sarcomas
2. 2 Eurosarc project
3. Eurosarc clinical trials
4. Patient and public info
6. Members section