NCRI Banners

Early start Sunday 3rd November off to Glasgow for a 3 days conference (see collected data on the NCRI page).

The NCRI is the National Cancer Research Institute so it was going to be an interesting time listening to new cancer research updates of research. In addition, I was asked to co- chair an event with Dr Richard Simcock which was “Treatable but not curable: Cancer as a chronic disease” on the Monday.

Conference: Day 1

I arrived around 1pm and went straight to the conference to book in and had a look around the exhibition stands and grabbed a cup of tea.

Iain Frame was opening the conference as he is the CEO of NCRI.  METUPUK had already had discussions with Iain and his team after I attended the NHS conference in April 2019 and he heard me speak about issues with drug access and clinical trials. Lesley Stephen, Beth Roberts and I have had a couple of conference calls with him and his team re the issues with access to clinical trials and the lack of a patient friendly trials database. There is a new revised search for clinical trials called Be Part of Research and we still can’t see ALL relevant trials are included. Beth has created a simple excel spreadsheet (available on metpuk website link here) that shows trials for breast cancer patients. This is a major issue and it’s about time that this is addressed.

There has been huge focus with the Scottish government regarding smoking and drinking. Gregor Smith, the Deputy Chief Medical officer, said they seem to be reducing the number of people smoking and drinking.

I missed the Interventional pharmacoecomics talk but caught up with Ben Kolbington from ICR after. I commented on a tweet and made me intrigued about it – find the blog here. It is unbelievable that this is happening in the NHS and we need change to reduce cost, and issues around patients being over treated with some cancer drugs and the NHS being over charged (no surprise there).

I stayed for the K-RAS signalling talk in cancer even though it was regarding lung and pancreatic cancers (there are similarities with the signalling network with breast cancer and its genetic network. Some cancer can mutate so there has to be some similarities for each cancer type. If we could just find the switch to switch off metastatic disease… wish it was that easy).

Next session was Breaking the obesity-cancer link – New targets and strategies
Some great research and epidemiological evidence which is now confirming that obesity does have a link to cancer and how to address this. Hugely interesting piece of work from Stephen Hursting from the Nutritional Research Institute from North Carolina. This was just my thing and I decided to go to a more intimate parallel session that he was involved in next after a coffee break.

Stephen went through his presentation details again and there was talk about using metformin and how different diets can affect different things, even treatment and how effective it was. It was clear from “mouse models” that there was mammary growth with overweight and obese mice. He was also was joined by Barry Laird who is a Senior Clinical Lecturer in Palliative Medicine and Annie Anderson who is Public Health Nutritionist and Dietitian.

The takeaway from all this was that, specifically for breast cancer patients, you need to maintain your BMI within range. When you start treatment inflammation can cause many issues, it can cause problems with the microbiota and even be an immunosuppressant. Metformin maybe something that they can use to help this issue. Obesity causes inflammation and inflammation can promote cancer. There was an interesting slide with diet and showing how it affected reduced T cells which are needed to target cancer. Again, an environment that can promote cancer.

For those without a diagnosis of cancer this quote is quite important:
“Preclinical evidence that intentional weight loss (if severe enough) can reverse the pro-cancer effects of obesity”

So, they have a goal to develop diet/exercise/pharmacological regimes that mimic metabolic and anticancer effects instead of radical surgery like stomach bypasses to lose weight.

Thinking about breast cancer and what I do with the #abcdretreats – as a patient I am leading the way for patients in getting this mindset across to patients. The one reason why this works is that this is led by me – a patient. So many times, I have heard advice from clinical people, but patients don’t take notice of this. But hearing this from a patient is different. The other issue is that clinical people are not experts, they have very general information on this but of course can start a conversation “do you exercise?” and in addition when you have cancer treatments like chemotherapy and other therapies, you are already weighed and BMI is taken, so people can be identified who, maybe need further advice and support with this. They have a captive audience and need to use this to the benefit for patients’ health.

Information by Barry Laird was interesting about the opposite of this with patients not eating and what is called Cancer Cachexia which is weight loss (sometimes as extreme as anorexia) and loss of muscle mass. This is a huge problem and can also cause in extreme instances death due to chemotherapy being too toxic. These deaths are not even recorded in statistics. Loss of weight can cause less treatment cycles, anaemia and less benefit of chemotherapy so it’s very important additionally to be at a good BMI. Barry explained we stage the tumour but not the HOST and this is important that we don’t just treat the disease but treat the person – he has created a GPS – Glasgow Prognostic Score – that helps identifying this.

They stage the person to give an indication of the inflammatory status prior to starting treatment and making sure that the person doesn’t get to the point of cancer cachexia. Anti-inflammatory drugs may be used to help with this. Annie Anderson talked about educational approaches to support and motivate people with diet – many interventions are needed to help address this issue. Mark Hull talked about what lifestyle changes with diet and exercise people can make when in recovery from cancer. He is a gastroenterologist so knew a lot about the gut and issues with it and what to do to help.

After this session, I went to have a chat with a couple of people who had submitted posters one in particular about exercise and secondary breast cancer.

Conference: Day 2

Dr Richard Simcock and I chaired the session “Living with and Beyond Cancer” which was very busy. We had some great speakers on this and the first up was Prof Phyllis Butow (University of Sydney). She discussed the psychological theories that help us understand the fear of progression or recurrence and uncertainty for the patient. She has developed a strategy of interventions that are helpful for the patient which will be an online tool for professionals. Hopefully this will be developed into something for patients in the future. The talk was fascinating and was a huge tick for my SBCinfographics – they help reduce fear and anxiety with recurrence. Again, something that I am ahead of the curve providing to patients. I’m glad that these have now been made available and adopted by NHS England as it is proving that I have been right to push and develop these for patients. Paternalistic approach is not effective to help with fear and anxiety and we need to empower patients and understand their risk.

These were the messages coming from the session.
Having a chronic disease, ie a disease that can be controlled for a period of time. She is aware that people are living longer.
Messages like “Think positive” are not helpful and there was much talk about how people avoided talking about cancer. There were many issues that happen with FCR – Fear of Cancer Returning like for example avoiding discussing it, excessive screening will be what some patients feel they need to do vs the other extreme which is avoidance of screening. So, it was a case of some people need to be treated differently.

Surprising that 50% of carers have FCR – Fear of cancer returning. Being younger makes you have more FCR and it was all about better managing the fear. Don’t ignore the fear as you need to acknowledge and address this.
People worry about death and dying and this needs to be discussed. My therapist said to me “we don’t need to talk about that” when I brought up the need for a discussion on this 5 years ago when I was rediagnosed with secondary breast cancer. Her inability to talk made me realize she wasn’t the right person to discuss this with, so I ended the sessions. Ive never been back but know that if I need it, I have support from a Christie psychotherapist whom I would ask to be referred to.
Detached mindfulness can be useful on this and it is something that may need signposting for patients that can be done at home without the necessary need to face to face counselling.

To end the session Phyllis confirmed that there is NO association with worry and worry would NOT make the cancer return.

Next was Jane Maher – I have known Jane for a few years via twitter and also met her in real life. She is involved in trying to capture data and identify the numbers of patients there are living with secondary cancer (this is ALL cancers not just breast cancer). She was talking to NCRAS who pull together ALL data collection from different areas to try to gain a figure of people living with secondary cancer and that figure is around 136,000 in the UK. This figure does not include denovo/stage 4 cancers from the outset so if you take this additional figure you find that the figure is around 200,000 people in the UK. There is clearly a need for support like clinical nurse specialists and pallative care. They are still looking into the figures to make sure everything is collected and I’m looking forward to Public Health England to be able to confirm the data and statistics that they are collecting from the COSD data set that is due out first half of 2020. I will be talking to the team to see what information they will have.

Last speaker was Paul Cosford and I had heard of Paul when I attended the NHS data and statistic conference in 2018 as he had talked there. Unfortunately, I didn’t get to hear him talk about his diagnosis of Stage 4 lung cancer, but it was good to meet him and hear him in the event that I co-chaired. It’s great that he is spreading the word that people can still live AND exercise after a stage 4 diagnosis and much what he said aligns with what I do and what I am doing. A very humble talk and one that has brought him down to earth from the heights of PHE Chief Executive; to a patient with a huge bump. He was very much into his cycling and then after a long charity bike ride where he had to quit and was soon in the patient bubble after being diagnoses with stage 4 metastatic lung cancer. An inspiring talk and one of hope and thoughts for the future if he can just keep going (and getting travel insurance) Im hoping that he will be around for a long time.

Another twitter friend I met was Prof Diana Greenfield. We met each other after the discussion about exercise and diet and when I raised issues with how clinical people are going to support patients if they don’t know anything about diet and exercise. I agree that we need experts on this, and it should not be taking clinical time. This needs addressing across the UK with personalized care plans.
It was great to meet the social media person from ICR aka Ben Kolbington. Ben just wait till #NCRI2020…

After trying to find the ECMC as I thought that they were attending the conference I came across Weston ECMC. A chance meeting and explaining what I do brought to light a specific clinical trial that they are hoping to start in early 2020. This trial is going to be alongside standard NHS treatment for a patient with metastatic disease but you will have tumour testing and they are looking for fit the patient to the right drug that will work. I also asked them “what happens when you may not have access to that drug due to drug lines etc?” He told me that they would be able to get access to the drugs and that wouldn’t be a problem!!! GET ME ON THE TRIAL ASAP!
I met briefly Richard Hoey from ICR who is doing some work with patients and their stories so if you want to be involved then please get in touch with the ICR. They need people who will talk about their experience so that this can help them lobby with the government

Unfortunately, I had to leave as it was a 10-minute cab ride to the train station for my 11 am and it was already 10.35 am… I quickly collected my coat and suitcase said goodbye to Lesley and ran out of the conference to the cab. He was quick and got me to the station with 10 minutes before the train departed. Why does this always happen to me? I chose a seat in the buffet car, but the woman serving was coughing and spluttering… too late to change, but I worried about her coughing all over my cup of tea…

By the time I arrived back at Piccadilly it was 2:30pm and I had a 45-minute wait for the train to Greenfield. A cab met me, and I arrived home ready for a Yorkshire tea.
Thank you to Clare Isacke and Ruth Plummer, joint chairs, for asking me to attend the meeting and for supporting the travel grant.

Hoping to be able to attend the NCRI2020 conference in Belfast!