Jon Birchall, Julia Black and Sharon Kell recently visited Bristol-Myers Squibb (BMS), one of the leading pharmaceutical companies pioneering new immunotherapy treatments to fight cancer. During his visit, Jon took part in BMS’s Global Patient Week where he was able to share his kidney cancer journey, from diagnosis to treatment, to help employees better understand a patients’ perspectives on the disease and its treatment. Jon and his wife, Sarah, had previously made a video about his kidney cancer experience. This video and Jon’s presentation were shared simultaneously with around 20,000 BMS employees located in BMS offices around the world. Jon is pictured with (l-r) Davide Piras (BMS Head of EMAC region), Mary Beth Harler (BMS, Head of Innovative Medicines Development), Amber Shotton (psoriasis patient), Veronique Walsh (BMS General Manger UK/IE), Jon, Giovanni Caforio (CEO of BMS Worldwide Global), Sharon and Julia (KCSN).

KCSN partners with the pharmaceutical industry, research institutes, hospitals and clinics to improve understanding of the kidney cancer patient journey and to highlight the various issues faced by patients during their care and treatment. Our goal is that this collaborative approach between patients and professionals will eventually lead to a more patient-centred approach to the care and treatment pathway for kidney cancer, so that patients become more involved in shared decisions about their treatment options. Please contact Rose or Julia for support, information or a friendly person to chat to on our confidential helpline 01209 890326, or join our closed FaceBook group to meet and chat with other kidney cancer patients and carers.

To compliment our work with the National Institute for Health and Care Excellence (NICE) on health technology appraisals to improve access to new and innovative treatments for kidney cancer, KCSN are members of Patients Involved in NICE (PIN). PIN is a coalition of over 80 patient organisations who work together to enable patient groups to actively and productively engage with NICE.

PIN is independent from NICE and the pharmaceutical industry. They use their combined knowledge, experience and direct contact with patients from a wide range of conditions to ensure the patient voice is represented within NICE, and that NICE puts patients, carers, and patient groups at the centre of its work.

They work alongside NICE’s Public Involvement Programme to provide a forum to enable patient groups to engage with NICE and to shape various aspects of NICE’s work.

Their last meeting was held on Monday 17th September, during which the following items were discussed:

  1. NICE shared decision-making guidelines – Dr Monica Desai, Consultant Public Health Adviser for NICE introduced the guideline consultation for NICE shared decision-making guidelines. The pre-scoping workshop for these guidelines is taking place on 3rd December and the first consultation period is 18 January – 28 February 2019. The guidance will be published in April 2021. Dr Desai wanted feedback from PIN members regarding; gaps in the shared decision-making system; what are the unanswered questions; who should support the process; timing of shared decision-making in the treatment pathway; the elements that need to be considered; how to measure shared decision-making; and the tools needed to support shared decision-making (decision aids, training, education and skills etc.)
  2. NHS long-term plan – Gill Leng, Deputy Chief Executive and HS & SC Director for NICE spoke about NICE’s involvement in the development of the NHS long-term plan. NHS England are developing a long-term plan to cover the next 10 years. Arms-length bodies, such as NICE, are submitting draft plans for work streams, such as research, innovation and technologies (especially digital), clinical standards, prevention, cancer, quality improvement and treatment pathways. PIN members were asked for their input to these work streams. The long-term plan will be published in November 2018
  3. New NICE technology appraisal process, published April 2018. Jenna Dilkes, Programme Manager – Planning and Operations, Technology Appraisals gave an update on the new technology appraisal process. The biggest change to the technology appraisal process is the requirement for a technical report and technical engagement with the manufacturer. The technical report is developed by NICE with information from the manufacturer and the evidence review group (ERG). It addresses scientific uncertainty and includes opinions, not recommendations. The technical report focuses the committee’s time on the important issues for decision-making and enables NICE to engage with the manufacturer to resolve technical problems. Patient expert statements are used to help develop the technical report
  4. Accelerated Access Collaborative (AAC) – Chris Feinmann, Programme Manager gave an overview of the work of the AAC. The Accelerated Access Review (AAR) was published in 2016 and identified various hurdles to access to new technology, such as; slow access to new products; multiple barriers to approval and adoption; industry not cognisant of NHS priorities; lack of coordination/strategic planning between different organisations; and lack of accessible data regarding uptake and use of new technology. The AAC was established in response to the AAR, and aligns all the national bodies (e.g., NICE, NHS England, Department of Health, NIHR, MHRA, NHS Improvement, etc. including patients, clinicians and researchers) around accelerating access. The Accelerated Access Pathway (AAP) includes horizon scanning, selection of best products, and adoption support for all types of innovation. The AAC filters out the best 5-10 products in terms of health gains and financial savings for the NHS to enter the AAP. These products are given transformative designation, enabling additional support and guidance to reach the market quickly. The AAC helps with evidence generation for clinical/cost effectiveness and regulatory hurdles, along with support for adoption and diffusion of the innovation within the NHS and metrics/data to track NHS use. The AAC would like patient groups to help filter 5-10 products for transformative designation.


PIN meetings are held quarterly in the NICE London office. The next meeting is scheduled for 10 December 2018. If you would like to contribute to the work of PIN, or would like to be more involved, please email us.

KCSN work hard to ensure patients are able to access the treatments they need for their kidney cancer. In addition to our work with the National Institute for Health and Care Excellence (NICE) on health technology appraisals for new medicines (you can read more on our Access to Treatments page), KCSN are also members of the Access to Cancer Medicines Coalition (ACMC).

The ACMC brings together 24 cancer charities and patient representative organisations. Its aim is to ensure that cancer patients have timely access to the most clinically effective medicines for their condition on the NHS. Using combined knowledge, experience and contact with people affected by cancer, they ensure that the patient voice is strongly heard in both public conversations and official decision-making relating to access to cancer medicines. The work of the coalition focuses on England, and covers the assessment of new and repurposed medicines, their availability on the NHS and funding arrangements, and the impact this has on patients.

The ACMC meets quarterly to discuss issues affecting access to cancer medicines. The last meeting was held on 4th September, and the following issues were discussed:

  1. Treatment criteria – as a result of restrictions on availability of some CDF drugs for blood cancers, NICE are formalising treatment criteria and incorporating these into the NICE technology appraisal process to improve transparency. Patient groups will be able to dispute the interpretation of clinical trial results where they feel access to medicines is being inappropriately restricted
  2. Off-patent, repurposed medicines – the Association of Medical Research Charities (AMRC) has produced a report Facilitating adoption of off-patent, repurposed medicines into NHS clinical practice The group are collating information on repurposed drugs. This will help inform discussions about the licensing route and commissioning of these drugs by the NHS and build the case for financial incentives for repurposing off-patent drugs
  3. Northern Ireland and CDF issues –  the Northern Ireland Affairs Committee is currently holding an inquiry covering the issue of access to cancer medicines. A number of ACMC members have provided written evidence and have been invited to provide oral evidence. The group discussed the option of working with groups in Northern Ireland and producing a joint letter
  4. Genomic Medicine Service – the National Genomic Test Directory is being launched in October 2018 and will specify the genomic tests commissioned by NHS England. Genomic testing will be delivered through a national network of Genomic Laboratory Hubs (and their sub-contractors) working to an agreed set of standards. The final draft of the directory for cancer can now be accessed online here
  5. Pharmaceutical Price Regulation Scheme (PPRS) – timelines for the PPRS consultation have slipped. Patient groups need to negotiate for a simplified, streamlined process to improve access, pricing and uptake arrangements for cost effective medicines. The most clinically and cost effective medicines need to be delivered and adopted faster with the aim of improving patient outcomes
  6. Brexit – key issues, such as future customs arrangements and goods regulations, remain unclear and it was noted these will have a potentially significant impact on the future supply and price of medicines and products being investigated in clinical trials (investigational medical products). The UK Medicines and Healthcare products Regulatory Agency (MHRA) will unilaterally take on post-Brexit marketing authorisation responsibilities.

Members provided a summary of their access to medicines priorities. KCSN reported on our involvement as stakeholders in the positive first-line cabozantinib NICE appraisal, the Scottish Medicines Consortium (SMC) Patient and Clinician Engagement (PACE) meeting for first-line cabozantinib (decision pending), and the first-line ipilimumab/nivolumab appeal following a negative European Medicines Agency (EMA) opinion.

Please let us know if you would like to contribute to this group by sharing any issues you have experienced or are experiencing with respect to accessing the treatment you need for your kidney cancer (

Many congratulations to Alison Fielding and Salena Mulhere, who are the new patient representatives (consumers) on the Bladder and Renal Clinical Studies Group (CSG) at the National Cancer Research Institute (NCRI), which manages research into bladder and renal cancers. Both had to go through a gruelling selection process to be chosen to represent the kidney cancer community in the UK; we are very proud of their achievement and so lucky to have found two such wonderful people who are willing to volunteer their time to speak up for all of us in this very important forum. Rose Woodward previously held this position, so the charity is delighted to continue its role in promoting kidney cancer research and voicing a patient perspective.


Salena is the widow of Tony, who died of a sarcomatoid version of renal cell carcinoma (RCC), and Alison is a stage 4 patient of clear cell RCC; each bring different experiences and skills to the role.





Alison said, “I am excited to be moving to the next level of involvement in research and hope to be able to offer a patient view in discussions. The number of clinical studies for RCC is less than other cancers so I want to understand how we can engage with clinicians and patients to drive up the amount of research and provide patients with options for trials.”

The NCRI CSGs have been in existence for more than 10 years, and are a central part of the UK’s cancer research infrastructure. The CSGs bring together clinicians, scientists, statisticians and lay representatives to coordinate development of a strategic portfolio of clinical trials within their field. All CSGs interact with clinical research networks, funders and researchers to develop studies aimed at improving outcomes for patients. The CSGs, sitting within the NCRI Clinical Research Groups (CRG) Team, provide the primary, but not sole, route through which new ideas for clinical trials are developed. There are currently 18 NCRI CSGs, including 14 cancer site-specific groups and four cross cutting groups. The CSGs are funded by a consortium of NCRI partners.

We are also sad to see the departure of Rose Woodward from the Bladder and Renal CSG and the surgical trials subgroup; Rose has been a patient representative on this CSG for the past 10 years, and is the longest-standing patient representative across all NCRI CSGs! A wonderful achievement! Rose has been influential in a number of projects run by the NCRI, and has championed the need for the patient voice in the design and development of kidney cancer clinical trials. Rose has been a passionate advocate for the kidney cancer community within the NCRI, and has gained the respect and admiration of many of the clinicians, scientists and researchers that she has worked alongside over the past 10 years. I am sure you will join me in thanking Rose for her unwavering enthusiasm, energy and commitment to helping further kidney cancer research in this country, and to wish her all the best for the future. THANK YOU Rose!


Because we believe strongly in the importance of access to reliable data for kidney cancer, KCSN is a member of the Cancer52 Access to Data Working Group. This group meets quarterly to investigate means of ensuring public access to clinical data held by Public Health England (PHE) for rare and less common cancers.

The group has worked with PHE’s National Cancer Registration and Analysis Service (NCRAS) to produce two films. The first is a short (8 minute) montage film featuring many of the leaders in cancer data giving their views on the importance of access to data. It covers Cancer52’s presence alongside the team from use MY data at NCRAS’s Cancer Services, Data and Outcomes Conference 2018 in Manchester at the end of June. This film explains why data is critical.

The second longer film is to ensure that all the learnings from the Cancer52 workshop, Getting data out for rare and less common cancers, organised with NCRAS and Brainstrust, could be shared with rare and less common cancer patient groups and charities, not just those who could attend the conference. This film helps charity members of Cancer52 understand the process for (literally) getting more rare or less common cancer data out of PHE.

Sharon Kell is working with NCRAS on a project to access clinical data for clear cell renal cell carcinoma (RCC) and rare subtypes of RCC. We will keep you informed of the progress of this project.

The NICE Annual Conference was held at the end of last month in Manchester. This is a good opportunity to catch-up on what NICE has been up to over the past past year. The conference showcases the latest developments in clinical improvement, health technologies and patient-centred quality care, providing insight into the innovations shaping healthcare, such as digital technology, patient empowerment, real world evidence and big data.
The conference was opened by Sir David Haslam, the chair of NICE, who spoke about the need to design care around people, and the development of person-centred guidance based on evidence. The NHS aspires to excellence, and this is critical to how the NHS is viewed externally. Innovators are supported by NICE to ensure they get their products to the people who need them quickly via schemes such as EAMS, the CDF and the new health technology appraisal process. The NHS needs to free-up time and resource to allow for the humanity of healthcare.
There followed a panel discussion chaired by Dr Phil Hammond about uniting the science and the practice of clinical improvement. How to link NICE guidance and evidence to improve care, the role of evidence in setting clinical policy and designing care pathways, and the tension between financial pressures and quality improvement.
In the breakout session about life sciences, Jennifer Prescott from NICE introduced the new NICE health technology appraisal process for 2018. The process was implemented in April this year, in a bid to improve the efficiency of the four NICE appraisal committees as the number of new technologies reviewed by NICE increases from around 55/year to 75/year. The addition of a technical report and earlier engagement with companies and experts to reduce uncertainties surrounding the data is expected to give faster access to new drugs and a final appraisal document (after one committee meeting) within 6 months. The first technology to go through the process is cabozantinib for liver cancer.
There was also an interesting session on shared decision-making, which, apparently, is at the heart of everything NICE does! Shared decision-making involves conversations between clinician and patient around personal preferences, options, benefits, risk and consequences leading to an informed decision. Around 40% of patients have not made an informed decision about entering a treatment pathway. Patients want to be involved with decisions about their treatment and there is a difference between what clinicians think the patient wants and what the patient actually wants. However, shared decision-making will need a fundamental shift in roles, relationships, responsibilities and attitudes to enable doctors and patients to work together. NICE are planning to introduce guidelines for shared decision-making, and work on this will start in August 2018 with the view to publishing guidance in 2021. In the meantime, CCGs, health science networks, medical students and patient organisations need awareness and education of shared decision-making practices.
Other interesting sessions included the Canadian example of the collection of real world data for use in health technology appraisals, and an update on the Accelerated Access Review and horizon scanning for new life science technologies in the UK.

Alison Fielding was delighted to be invited to the 13th European International Kidney Cancer Symposium 2018 in Prague on 27-28th April, where she talked about kidney cancer services from a patient’s perspective. You can take a look at Alison’s presentation here: A Patient View Here is Alison’s report on the meeting:

After 4 years of living with kidney cancer and reading about research going on worldwide, it was great to be in a room where so many authors of the papers were all in one place. For 2 days, the great names and rising stars of urology, oncology and science sat together to learn from each other and debate issues.

From stunningly impressive science looking into how kidney cancer develops from the TRACERx Renal team, revelations about the effect of our gut bacteria, the impact of antibiotics on treatment, to emerging information from trials and case studies, layer by layer we learnt more about kidney cancer and ways to diagnose and treat it. We also learnt just how much is still unknown. We don’t truly understand who will get kidney cancer and why; we don’t know which treatments will work for each patient; we don’t know how drugs may be developed to attack processes essential to disease growth; and we don’t know the impact that future treatments will have on patients in terms of efficacy or side effects.

The slides and many videos of the presentations will be online soon so rather than summarise them, here are my personal highlights.

  • The recent TRACERx research on the science of renal cancer development was presented by the project leader, Samra Turajlic, consultant medical oncologist from the Royal Marsden Hospital. Even though you’ll need more than ‘O’ Level/GCSE biology to grasp it all, it is worth taking a look at her presentation. KCSN have asked her to help us do a patient-friendly version.
  • I loved the presentation on the impact of the microbiome on immunotherapy response. PhD student, Lisa de Rosa from France, has a bank of faeces samples, which she has analysed. She demonstrated that the presence of certain bacteria predicts the response to treatment and lays the groundwork for ways to change the patient’s gut bacteria to improve their chances of a response. See Lisa’s presentation here.
  • The use of screening for kidney cancer in appropriate cases was presented by Dr Grant Stewart, consultant urological surgeon, Addenbrooke’s Hospital, Cambridge. See Dr Stewart’s presentation here.
  • Once identified, Dr Maxine Tran, consultant urologist, Royal Free Hospital, London, made the case for more biopsy use to avoid over treatment of benign masses and the risks associated with this. See Dr Tran’s presentation here.
  • As you would expect, there were lots of presentations about immunotherapy. There are too many to list but the focus was on its use in both metastatic settings and in trying to prevent disease recurrence. The important points in all the immunotherapy discussions was the relatively low response rate, the risk of side effects, increasing results for the time before disease progresses, and the potential for durable responses in the lucky few. Overall survival is usually just as important as time before progression for patients. It was clear that it is difficult to assess how survival, having had immunotherapy and then moving on to another treatment, may be impacted positively by the immunotherapy, even if immunotherapy had appeared to fail.
  • Whilst immunotherapy grabs all the news headlines, it was clear that there is still a place for tyrosine kinase inhibitors (TKIs). Indeed more will be developed, which work in slightly different ways. Combination therapy of different TKIs with immunotherapy seems set to dominate clinical trials for years to come.
  • Drug treatment when you don’t have any evidence of disease, but hope that treatment will stop progression in future, is called adjuvant therapy. There are conflicting views in the cancer community about whether it works, with the balance currently falling on the ‘it doesn’t work’ side, at least for TKIs. Professor Tim Eisen, Cambridge University, presented his research with patients, which asked them how much extra life they would want to justify putting themselves through treatment. Watch here and see if you agree with the results.
  • There were lots of case studies. My vote for the doctor that I would most like to be my doctor was Daniel Heng from Toronto, Canada, who always included details about the patient as a person and not just a biological challenge, and whose choice of treatment was matched to the patient’s life goals.
  • Half the audience were women and, although a much smaller proportion of presenters were women, they are making their mark and will be the leaders of the future. It shouldn’t be a surprise, but I normally attend cardiology events where women on stage are rare.
  • On a similar note, I was proud to be British and be there to see the presentations from the leading clinicians and scientists in Europe – 22% of presenters were from the UK. There may be things about our healthcare that we would like to improve but when it comes down to it, you know you are in the best hands. I was also proud of myself because they posed questions at each session and I got them right. That is more of a credit to the KCSN in that I was an informed patient before I went thanks to their great information services.


Just like a consultation I, as a patient, was given 10 minutes at the end once the doctors had finished! Following on from 2 clinicians who had done a good job of outlining the benefits of centralised services, I talked about some of the challenges to be overcome to make it better for patients. For this, I spoke about the wider experience of having cancer and being a carer, and the difficulties which we can face when treatment is away from home, such as travel time and effort, costs, and isolation from key services just as you need them. I hope that some will follow my 5 point template for making it a success.

Last Monday, Gina Squires and Sharon Deveson Kell were delighted to be invited to attend a networking event organised by the South Reading Cancer Support Network.

The meeting was chaired by Dr Kajal Patel, the Cancer GP Lead for Berkshire West Clinical Commissioning Group (CCG). Dr Patel had identified that the South Reading region was continually coming bottom of the league tables with respect to uptake of cancer screening, early diagnosis and survival. Cultural diversity in the region contributed to poor awareness of the signs and symptoms of cancer, and a reluctance to seek help from local doctors.

For the last year, South Reading locality has been working alongside Macmillan and Rushmoor Healthy Living on a project to raise awareness of the signs and symptoms of cancer within the different communities. Forty community volunteers have been identified to take part in five sessions of training to become ‘Cancer Champions’; this is to promote education and awareness within their communities.

The group held a networking event on Monday 30th April 2018 to establish links with the Cancer Champions and to introduce them to local support groups and cancer charities. This is so they can take these contacts to the community groups, patients directly, or residents that need help, who may not have known that these groups exist. The charities and support groups will then be able to develop new links with patients that need support; for example, the Cancer Champion can act as a link for patients with a different culture/ethnic group or language. 

This was a fantastic opportunity for KCSN to not only raise awareness of kidney cancer, but to promote the work of the charity to the Cancer Champions and to build a working relationship with them going forward.

KCSN were delighted to be invited to this year’s International Kidney Cancer Coalition (IKCC) conference held in Mexico City on 12th-14th April. Around 50 patient advocates from all corners of the globe made their way to Mexico to come together to learn from one another, share best practices, and to build partnerships to help support kidney cancer patients in their home countries.

During the 3-day conference, I presented KCSN’s Patient Champion Programme in relation to increasing clinical trial participation. You can see my presentation here: IKCC 2018 – Increasing participation in clinical trials

The IKCC is a coalition of kidney cancer patient advocacy groups from 25 countries and 6 continents. Some advocates had come from as far away as Australia, Ghana, India and South Africa. This year’s conference highlighted the particular struggles Latin America has with kidney cancer. The global incidence of kidney cancer is rising, and by 2020 there are expected to be 620,500 new cases every year. Sixty per cent of these cases will be in developing countries, such as Latin America.

KCSN has a long history with the IKCC; Rose Woodward was a founding member and has been at every annual conference since the very first conference in Frankfurt, Germany in 2010. Rose is also an IKCC board director, and has been a member of the board since its inception. Julia Black is Operations Manager for IKCC and has been instrumental in organising the IKCC annual conferences around the world. I have been their resident medical writer for a number of years, and I’m responsible for writing the conference report and minutes for the Annual General Meeting.

Day 1 of the meeting kicked off with a joint session with key opinion leaders in renal cancer from Latin America. Rachel Giles, IKCC chair, and Carlos Castro Sanchez from our host patient advocacy group in Mexico, welcomed everyone to Mexico City and officially opened the conference.

Over the 3 days of the conference, we learnt from world-renowned renal cancer experts and patient advocates from around the world.

The keynote address usually highlights examples of successful patient advocacy. This year we were lucky to have two keynote addresses: Dr Felicia Knaul, based both in the US and Mexico, talked about closing the cancer divide and expanding access to cancer care and control to developing countries, while Dr Brenda Gallie from Canada provided an example of the use of a point-of-care database to improve the care and treatment of children with eye cancer (retinoblastoma) on a global basis.

Dr Michael Jewett, a urologist from Toronto, Canada, and Dena Battle (USA) discussed the pros and cons of active surveillance for small renal masses from both the surgeon’s and patient’s perspectives. Joyce Graff (USA) moderated a session involving patient advocates from Brazil, India, Korea and USA about the management of renal cancer in countries with limited access to treatments and diagnostics.

We had a session about the use of social media by patient organisations, and a very interesting discussion with Valerie Hartt, a journalist from Brazil, and Stephen Andrew from Canada about how cancer is reported in the media, along with some tips on how to deal with the media. In a session about real world evidence, we learnt about the use of cancer patient registries from Dr Danny Heng from Canada and Dr Diego Abreu from Uruguay. During this session, Lucy Willingdale from Kidney Cancer UK (KCUK) presented the results from their annual patient survey, and the working groups to improve renal cancer services in the UK.

I presented an outline of the KCSN Patient Champion Programme in a session titled Hot Topics in Kidney Cancer. After setting the scene for clinical trials in the UK, I went on to discuss the aims of the Patient Champion Programme to increase patient recruitment and retention in clinical trials. I talked about the workshops that we have run at the Marsden and the Christie, and the usefulness of the clinical trial database for searching for UK kidney cancer trials. I also mentioned the Clinical Trials Hub on our website and gave examples of the information contained on the hub.

In the same session, Dr Eric Jonasch, a medical oncologist from Houston, Texas, talked about the recent advances in the use of immunotherapy for the treatment of metastatic kidney cancer, and questioned whether is was effective for everyone. Dr Jonasch also spoke about the gaps in clinical evidence for advanced kidney cancer, which led on to the launch of the IKCC Global Patient Survey.

There were sessions on the management of kidney cancer in the elderly and the challenges serving paediatric and adolescent kidney cancer patients and their families. Belinda Jago from Australia gave a very moving account of her young daughter’s fight against kidney cancer, and the difficulties accessing treatments and age-appropriate care facilities for adolescent patients. One of the final sessions of the conference discussed how advocates can make an impact in kidney cancer, such as engaging in clinical trial strategy, health technology appraisals, kidney cancer guidelines development and stakeholder engagement.

The World Kidney Cancer Day 2018 campaign was launched at the conference, and we are really excited to be involved again this year to raise awareness of kidney cancer through the use of an interactive and fun quiz. KCSN has written the second edition of the My Treatment, My Choice decision aid for metastatic kidney cancer, which was also launched during the conference and will be used globally to assist with shared decision-making for metastatic kidney cancer treatment.

Over the 3 days of the conference, I met a lot of interesting and enthusiastic people, willing to learn and take new ideas back to the patients they support at home. We had some really good sessions with plenty of discussion and exchange of ideas and experiences. I made a lot of new friends and caught up with some old ones too! The conference was very intense, but I did manage to get out of the hotel after the conference finished on Saturday to see a bit of Mexico City before I left on Sunday!



The third Early Detection 2018 Annual Symposium took place at Cancer Research UK Cambridge Institute on the Cambridge Biomedical Campus in January this year. The symposium was attended by Tim Marple, a member of the KCSN, who was also a panel member for the question and answer session. Read Tim’s kidney cancer patient story here.

Here is Tim’s report on the event:

Although I was on a panel for the experts to ask questions of, there were several very interesting speeches made by clinicians and scientists in the field of cancer research. I must admit that as a layman they were difficult to understand, but non-the-less, I did pick up the following.

Early detection, whilst being a great move forward, also has its problems. Years ago, particularly in lung cancer, images of 2-3 cm tumours were easy to look at and confirm the diagnosis. However, with CT scans getting more detailed, doctors can now see 1 mm masses. However, they are unable to diagnose such small masses or carry out biopsies, so a ‘watch and wait’ system is adopted for these very small tumours. Also, there is now research going on because they are finding what they thought were secondary cancers after treatment are actually new ones in their own right. Also, using new techniques, scientists are developing a breath test that could pave the way to early diagnosis for some cancers.

Liver cancer was perhaps the most complicated cancer to understand. It is apparent that African and Asian countries have the highest rate of liver cancer. There seems to be evidence that in China some cases of liver cancer my be attributed to the old fashioned Chinese herbal medications.

In both liver and lung cancer there is a direct link to smoking and drinking, with lifestyle also playing a part.

The patient panel had myself with kidney cancer, 2 men with prostate cancer, and one man with throat cancer. Questions were asked from the seminar in an open debate. It was evident that early detection had played a significant part in our success stories. It was interesting that we were all male, and that it had been our female partners that had sent us to the doctors. Not very technical, but I suspect there is a message there somewhere!

I was asked about the confidentiality of letting employers know about detection of cancer. Unfortunately, all of the patients on the panel had retired before diagnosis. I told them of my concerns relating to the wait for scan results. They seemed shocked that 8 weeks was my normal waiting time to get results. So then stress was discussed, because waiting for results can be stressful.

There was certainly the belief amongst everyone there that early detection had benefited patients, and with new research always underway through specific grants and partnerships, they actually feel that great strides are now being made, even to the point where micro cameras can go into the body to identify tumours early. It was then announced that a tender for a new purpose-built cancer hospital with a hotel attached is being planned for 2022 on the Cambridge Biomedical Campus. This will provide a base for scientists and treatment all under one roof.

We then made our way home and took 2 hours to do 10 miles on the M11. But sometimes you have to put life into perspective and shrug your shoulders.


Read the conference report on the Cancer Research UK website here