Our 2024 networking events are 'hybrid' meetings, so you can join in person or via zoom - next event is Saturday March 23rd in Manchester, UK.
We are hosting 'gatherings', patient / researcher focus days, and there are lots of opportunities to get involved in 2024.
Our next 'gathering' is Saturday March 23rd in Manchester - please save the date. More details to follow.
Generally our meetings or 'gatherings' are a few hours long (for virtual meetings), or all day events (for in person or hybrid meetings). They are completely free to attend and we have limited travel and accommodation bursaries available for attendees, if needed. You can read our bursary policy here.
The events are for those diagnosed with all Salivary Gland Cancers including Adenoid Cystic Carcinoma, their family, friends and supporters, as well as clinicians and researchers working in this area. There is always a support session where people can share experiences and discuss with one another. We also always have informative presentations on anything from the latest research to new treatments, from clinicians actively treating and researching into these cancers.
Our last gathering was October 7th 2023 in London, UK and via zoom.
We will be uploading videos of our presentations to the Youtube channel and website over the next few weeks.
Living with the late effects of Radiotherapy
Emma Hallam BSc MSc PgCert MP, Macmillan Consultant Therapeutic Radiographer, talks to us about her work at the Nottingham Radiotherapy Late Effects Clinic: Mum's Macmillan Poster (shu.ac.uk) Consultant Radiographer at NUH Finalist in Macmillan Professionals Excellence Awards | Latest news | NUH
Frances Robinson, Oral Hygenist talks to us about the importance of oral health after radiotherapy and how to minimise late effects. Frances Robinson HE Dip, MSc, Assoc.FCGDent, Assoc. FPH | ProDental CPD
Plus Docent Mattias Andersson from the University of Gothenburg in Sweden talk on 'Clinical and molecular significance of MYB and 1p/6q rearrangements in adenoid cystic carcinoma'. Group Mattias Andersson | University of Gothenburg (gu.se).
February 2023 - Hybrid Gathering in Manchester, UK and online - Rivoceranib, mutational burden of SGC, ESMO guidelines and PSMA trial update
We caught up with old friends, and met some new ones. We had a great lunch and heard talks from the Manchester research team Steven Churchill and Karan Patel, and Professor Carla van Herpen who joined us from the Netherlands. You can see video recordings of their presentations by clicking on the links below or via our YouTube Channel.
Steven Churchill presented 'Rivoceranib - a promising new oral treatment for adenoid cystic carcinoma'.
Dr Karan Patel presented 'The effect of tumour mutational burden in salivary gland cancers'.
Professor Carla van Herpen joined us from the Netherlands via zoom to talk about:
June 2022 - Hybrid gathering London, UK and online - Carbon Ion therapy & ASCO 2022 Update
We were delighted to see so many people at our summer gathering on Sat 25th June is in London, UK and also via zoom.
In the morning we caught up with old friends and new, had a short fitness blast (from our chairs).
In the afternoon we had two excellent presentations and discussions, and you can view them using the links below:
Dr Alex Jensen formerly of Heidelberg University in Germany, joined us to talk about Carbon Ion (or Heavy Ion therapy) and its' role in ACC. Watch it here.
Dr Robert Metcalf updated us on the latest research from ASCO 2022. Watch it here.
October 2021 - Understanding Adenoid Cystic Carcinoma: the role of MYB
At our hybrid meeting in October 2021 we were joined by Professor Arturo Sala from Brunel University to talk about his research into Adenoid Cystic Carcinoma ('ACC') and the role of MYB in the cancer.
You can watch a recording of his presentation here.
April 2021 - Treatment Options for Metastatic disease & research into lenvatinib update
Dr Metcalf talks about treatment options for metastatic disease (or 'mets')
Medical Oncologist Dr Robert Metcalf talks about treatment options for metastatic disease and when they might, or might not be used.
The podcast of the discussion is here and available to listen to and download.
Dr Laura Feeney talks about her research into outcomes with Lenvatinib in Adenoid Cystic Carcinoma patients
Clinical Research Fellow, Dr Laura Feeney, talks about her Review of Real World Outcomes with Lenvatinib in Recurrent/Metastatic Adenoid Cystic Carcinoma ('ACC').
You can see her video here.
January 2021 - ACC research update & what to look out for in 2021
At our January 2021 gathering we were joined by Jeff Kaufman of the ACCRF. He gave us an update on ACC research worldwide and what we can expect to see from ACC research in 2021.
You can view his update here
October 2020 - Focus on anxiety, post-traumatic stress ('PTS') and how to cope
In October 2020 we were joined by Dr Elaine Mayon-White to talk with us about anxiety, post-traumatic stress ('PTS') and how to cope. You can see the recording here.
We will follow this with a series of 'vignettes' covering other related topics such as the family aspects of dealing with anxiety, useful resources and other topics we discussed at our gathering.
You may also like to read our own Sally Crowe's blog article about her experience of being diagnosed with Adenoid Cystic Carcinoma, Post-Traumatic Stress and Cancer.
August 2020 - Dr Metcalf talks about scans, follow-ups and nomograms in our first podcast
In August 2020 we focussed on scans - the what, when and how for ACC.
At our August ACC meeting, medical oncologist Dr Rob Metcalf talked to us about scans, in particular MRI and CT scans, and their role in discovering and monitoring disease in ACC.
How often should you have scans? Does an MRI scan show ACC growing on your nerves? What is a nomogram and how can it help in discussions with your clinicians?
A podcast of this scan discussion can be found here & is now available to listen to and download
Acinic Cell Carcinoma: Lessons from Adenoid Cystic Carcinoma - discovering new treatments bench to bedside. (July 2020)
Acinic Cell Carcinoma: Lessons from Adenoid Cystic Carcinoma - discovering new treatments bench to bedside.
SCGUK’s first ever meeting for those living with Acinic Cell Carcinoma took place online on the 15th of July. There were nearly 20 people taking part, including those living with AcCC, their family members, and researchers into this rare salivary gland cancer.
There was a chance for everyone to introduce themselves, and share something of their story, including diagnosis and treatment pathway. Then Dr Rob Metcalf*, a medical oncologist who is also a researcher in the field of salivary gland cancers, talked to us about some of the latest findings in the world of Acinic Cell Carcinoma research. A summary of his talk is provided below.
All salivary gland cancers have different, specific biology
There are around 24 different types of salivary gland cancer. They are all different diseases, and you’ve got to consider them as differently as if you were thinking about breast cancer and bowel cancer, from a medical oncology perspective. (In surgery and radiotherapy, treatment paths would be more similar. A surgeon might say – if it’s localised you remove the tumour. A radiation oncologist might say – there are certain high-risk features, and you give radiotherapy after surgery for some patients and not others, but specific radiotherapies work for multiple salivary gland cancer types.) However, when it comes to drug treatments, every single salivary gland cancer is entirely different. Each cancer has a different biology, and so will have different optimal drug treatments. That’s why it’s important for us to understand the individual biology and workings of each different salivary gland cancer type.
Challenges in salivary gland cancer research
Generally, research studies in this area tend to be run with groups of patients with different types of salivary gland cancer, rather than there being studies about specific cancers. So, if you look at a study, there may be 20 patients, and of those 20 patients, maybe two will have Acinic Cell Carcinoma. It’s difficult to draw useful conclusions from such a small sample of people. The rarity of these cancers is partly responsible for this happening, as not only is it more difficult to get funding for research, it’s also harder to find the numbers of patients needed to get meaningful data from a trial. One of the reasons we set up Salivary Gland Cancer UK was to build networks between researchers and patients. This means patients can contribute to vital research into their own specific type of cancer by donating blood and tumour samples to lab work. They can also learn about, and be involved in, trials for new drug therapies and treatments.
What is driving Acinic Cell Carcinoma?
A research group from Germany have published the results of their research into what drives AcCC**. They have sequenced the genomes of a handful of patients with Acinic Cell Carcinoma and they’ve found a specific, recurrent genetic change. They found a relatively large number of genetic changes in each person, but they found one change, named NR4A3, in all of the patients in the study.
It’s a really important finding, because it gives researchers a focus to try and work out how to switch off the overactive cancer cell behaviour in AcCC. If this is the key genetic change driving Acinic Cell Carcinoma, how do you switch off this alteration, or how do you work out what this change is regulating, what it’s doing within the cell – and block it? At this stage, this is still an if. In the patients whose genomes were sequenced in this study, there were a wide range of genetic changes, so we can’t say for certain that the NR4A3 change is what’s driving the growth of each tumour. But because it’s occurring with such regularity it’s a very promising place to start.
Why understanding the biology of AcCC cells is so important
It’s very important that we understand Acinic Cell Carcinoma from a medical oncology perspective, in order to develop new drugs. It’s the start of the journey in the process of developing treatments, because you have to understand the biology of a cancer before you can develop a targeted drug trial.
Otherwise, the drug trial is just set up on the basis that there’s a new drug available – so let’s try it on this cancer and see if it works. It’s a very hit and miss approach. There are a number of these types of drug trials for salivary gland cancers. When you get the results, some people may respond, and others won’t – and it’s very hard to pick apart why, or what is really working. This is particularly true when you are not only working with a small sample of people but also, the sample includes people with several different types of salivary gland cancer.
Q: Is the biology you’ve described for Acinic Cell Carcinoma uniform across everyone, or are there variations?
This genetic change was recurrent across all the Acinic Cell patients in this paper – around 15 people. But this isn’t a very large sample – and it is rare to see uniformity in biology. If you looked at a larger number of people, you would probably find that it’s not as simple as everyone with Acinic Cell having the same genetic change. If you look at other cancer types, there tends to be more than one genetic cause. In another form of salivary gland cancer, Adenoid Cystic Carcinoma, there’s one particular gene that you see occurring in around 60% of patients. Another 30% have a different form of this gene. The remaining 10% or so don’t express this gene – MYB – at all and we don’t yet know what causes their cancer.
We will probably find the same sort of variation in Acinic Cell Carcinoma. On top of that – the genetics of each individual patient’s cancer are different – so even if they have the same genetic mutation (NR4A3) the context in which it is found is still really important. If you’ve got one mutation and nothing else, you’ve got less interference in the over activity of that gene. If you’ve got one mutation and another 100 mutations, just tackling that one mutation alone might not work. It’s a question of identifying which, if any, of the genetic changes you have identified are important.
A potential new drug treatment for certain types of Acinic Cell Carcinoma
This is data that was presented at ASCO’s (American Society of Clinical Oncology) annual meeting in June 2020. It’s the world’s leading oncology meeting, focusing on drug therapies rather than surgical oncology or radiation oncology. It’s a study of a particular targeted therapy in salivary gland cancers. It exemplifies how we still group together salivary gland cancers. The study includes patients with Mucoepidermoid Carcinoma, Myoepithelial Carcinoma, and several other salivary gland cancers, as well as Acinic Cell Carcinoma. But we have to analyse them separately, because these are all biologically very different entities.
This study was asking: Is it possible to classify and treat patients by a specific genetic change, rather than by a specific salivary gland cancer? In this study, all the patients had the same change in a gene called HRAS, although they had several different types of salivary gland cancer. The patients were all given a targeted drug, Tipifarnib, and the size of their tumours was measured. A 30% or more decrease in tumour size is considered significant. There was some decrease in size in a third of the patients.
In this study, there was a single patient with Acinic Cell Carcinoma, whose tumour did decrease in size. Acinic Cell Carcinoma is a rare disease, and the HRAS mutation is a sub-group of the AcCC patient population. When you are a clinician working with patients with salivary gland cancers, this can be the level of evidence you are working with. Moving forward from here, we would ideally do two things in parallel. Firstly, a larger trial of 20, 30 people with Acinic Cell Carcinoma who have an HRAS mutation, to see if their tumour would shrink when taking Tipifarnib. Secondly, work in the lab, to understand more about the biology of Acinic Cell Carcinoma, to understand if – and why – this treatment might work, so the two pieces of research could feedback into each other.
Q How common is HRAS in Acinic Cell Carcinoma?
We don’t know for certain and more research needs to be done, but a ballpark initial figure might be 5%.
*Dr Metcalf divides his time between The Christie Hospital in Manchester, where he treats patients with all types of salivary gland cancer, and Manchester University, where he researches into salivary gland cancers, with a particular focus on Adenoid Cystic Carcinoma.
**A link to the article about the NR4A3 Transcription factor research.
Saturday May 2nd 2020 - Virtual gathering
On Saturday May 2nd we held our first virtual gathering. It was fantastic to be able to connect even when we are in 'lock-down'.
First of all we heard from everyone there and welcomed new members, caught up with 'old friends', and had a good discussion around the groups experience with Lenvatinib.
After a break, Emily Dormer joined us to give us some gentle exercises for the head, neck and shoulders to help us with rehab after surgery and other treatments.
Last, but certainly not least, we had Jeff Kaufman from the ACCRF join us to talk through his international view of ACC research and how it's been affected by Covid-19. His presentation can be accessed here.
Saturday November 2nd 2019, Glasgow, Scotland gathering
The last meeting of 2019 was held on Saturday November 2nd 2019 in Finnieston Quay, Glasgow.
It was a fantastic day, where we heard about the AL101 trial soon to open at the Christie (NOTCH focus) from Dr Metcalf, and internationally from Jeff Kaufman of the ACCRF.
After a delicious lunch, we had a group discussion between a surgeon, medical oncologist and the patients and carers around the room. The need for a greater understanding of ACC and how we might get that was discussed. How can we get patient data and use it safely and appropriately to move things forward? What would a registry look like and how can we achieve it?
It is fantastic to see people so engaged and to be so supported by our network.
The ACCRF Presentation can be accessed here.
Saturday May 18th 2019 - London, England gathering
Our last event was in London, England on Saturday May 18th 2019.
We met in Angel, just 10 minutes from Euston and Kings Cross train stations.
After introductions and a chance to chat with others, we shared a light lunch before presentations from Dr Metcalf and Jeff Kaufman on the latest research into ACC. It was fantastic to see so many people there. Check out our Facebook page for pictures from the day.
Saturday 17th November 2018 - York, England gathering
On November 17th 2018, more than 50 people living with Adenoid Cystic Carcinoma and their supporters gathered in York for SGC UK’s network meeting.
In the morning, we held a support session. Those living with ACC and their family and friends all had the chance to talk openly about their experiences.
For many, it was the first time they had met anyone else with ACC. They discussed everything from their diagnosis and treatment journeys, to their struggles finding expert advice about this rare cancer, and how they were dealing with its physical and psychological effects. Over lunch, there was more time for everyone to share information and stories.
In the afternoon, the meeting heard from two expert speakers, and everyone had the chance to ask them questions.
Dr Rob Metcalf, Clinical Medical Oncologist and researcher talked about his work at the Christie Hospital, Manchester. He explained how his research into ACC is looking at how the disease can be tackled in two ways. Firstly, by stimulating the immune system to attack it, and secondly, by targeting the faulty genes that drive the cancer.
Our second speaker, who joined us by Skype from the US, was Jeff Kaufman of the ACCRF (Adenoid Cystic Carcinoma Research Foundation). He gave us an overview of some of the research being done into ACC across the globe. His presentation can be found here.
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