About Us .

We are the result of a collaboration between a patient advocate and medical oncologist, both passionately committed to further research into salivary gland cancers. We’re firmly embedded in the UK and Worldwide research communities. We also have strong links with other patient support groups.

You can read our story in an article published by The BMJ. It can be accessed here.

We aim to provide reliable, consistent information and support to those with salivary gland cancers, those that support them and those that are working to treat or cure them. As a new charity we welcome your support in whatever way you are able to contribute. We value your time, your knowledge, your presence and your financial support. Everyone is welcome.

What we do

Emma Kinloch, Salivary Gland Cancer UK founder, on what we do.

Board of Directors

The Board consists of three Directors: Emma Kinloch, Dr Robert Metcalf and Kemi Olaiya.

Committees

In addition to the Board of Directors, we have a patient/carer committee and a scientific committee of researchers and clinicians who provide input and direction to the Board of Directors of Salivary Gland Cancer UK.

Supporters, collaborators and memberships

Salivary Gland Cancer UK has a number of relationships with key national and international groups, all working to further research into rare salivary gland cancers.

Research

Active research projects are underway at The Christie NHS Foundation Trust, and The University of Manchester, Manchester, United Kingdom.

Give yourself permission to… is a key message when dealing with stress, anxiety and feeling of being overwhelmed. It’s okay to feel angry, to feel depressed, anxious. It’s okay to cry. * Whatever you need to do to feel some relief, take it. * Anxiety and stress can feel overwhelming. It can affect your sleep, digestion, your immune system and so much more. How have you coped? How has stress manifested for you? * For some interesting insights and techniques on managing anxieties, listen to Dr Elaine Mayon-White’s video. Link in profile. about 8 hours ago

RT @useMYdata: ‘Trust & transparency: GP Data for planning & research’ – The only patient focussed event on the GPDPR. All are welcome, ple… about 3 days ago

We are celebrating Carers Week! Sending a huge thank you to all those who care for and support patients with cancer, and all other illnesses, conditions and diseases. * . This year’s theme is ‘Make Caring Visible and Valued'. Join us in showing support for unpaid carers and help raise awareness of caring, carers and the challenges unpaid carers face. * Many carers are family members and that makes the emotional journey all the more challenging. As part of #carersweek we have been talking to carers and you will hear their story on our website - Link in profile. * If you’d like to help make some noise, like and share this post and follow us for more. about 5 days ago

RT @HeadNeckMD: Phase II results of ATRA for #ACC now available. Some stabilizing effect in prior VEGFR treated and low MYB expressers. Wai… about 8 days ago

At #ASCO2021: Average survival after recurrence for #adenoidcysticcarcinoma patients without NOTCH mutation approached 10 years demonstrating the challenges of how and when to perform surveillance scans. Study led by @RobertLMetcalf @TheChristieNHS #ACC #salivaryglandcancer about 8 days ago

New study led by @RobertLMetcalf @TheChristieNHS 120 UK patients with #adenoidcysticcarcinoma describes clinical outcomes with & without NOTCH gene mutation. Shows the importance of identifying new treatments for #ACC patients with NOTCH mutations #salivaryglandcancer #ASCO2021 about 8 days ago

We are at ASCO! The American Society of Clinical Oncology Annual meeting 4-8 June. You can visit our stall and read about our research. * Read about the new study led by Dr Robert Metcalf at The Christie Hospital NHS of 120 UK patients with adenoid cystic carcinoma, describing the clinical outcomes with and without NOTCH gene mutation. This study shows the importance of identifying new treatments for adenoid cystic carcinoma patients with NOTCH gene mutation. * With the average survival after recurrence for adenoid cystic carcinoma patients without NOTCH mutation at approaching 10 years, it demonstrates the challenges of how and when to perform surveillance scans. * Founded in 1964, ASCO is committed to the principle that knowledge conquers cancer. ASCO is the largest oncology organisation that is focussed on advancing pioneering research and educational opportunities. * If you visit our stall you can hear about the community and educational work we have been doing. Hope to see you there! about 9 days ago

National Smile Month is the UK’s longest running campaign for oral health. * We know how many of you have had surgery and radiotherapy that may have impacted your smile, teeth and ability to manage your oral health. * Later this year we will be posting information and talking to dental teams to help support you with reliable information and advice. * In the meantime, keep smiling! and sign up for our newsletter to join keep up to date with news, events and more. Link in our profile. about 15 days ago

Today we thank all researchers & clinicians working in rare cancer research & all patients who have taken part in clinical trials. We look forward to more international collaborations to develop more clinical trails for #salivaryglandcancer patients #CTD2021 #clinicaltrialsday about 23 days ago

Today we support International Clinical Trials Day and thank all the researchers and clinicians working in rare cancer research, and all the patients who have taken part in these trials. SGC UK is a member of the International Rare Cancers Initiative ('IRCI') which facilitates the development of international clinical trails for patients with rare cancers in order to boost the progress of new treatments for these patients. The initiative hopes to encourage the use of innovative methodologies to maximise the potential for answering research questions and to identify and overcome barriers to international trials to allow international collaborative trials to run smoothly. SGC UK has a page on our website of clinical trials databases that can be searched for trials in salivary gland cancers. Trials can be recruiting internationally and can take place in many countries to recruit patients more quickly. This is particularly important for rare cancers like ours. Clinical Trials - Salivary Gland Cancer UK We will continue to collaborate internationally to get more trials developed, open and moving forward the treatment options for patients. #CTD2021 #clinicaltrialsday about 24 days ago

This collaborative study found that the survival of patients with salivary gland tumors may depend on the primary tumor site. They found differences in prognosis for minor salivary gland tumors vs those in major salivary glands, and there are some suggestions as to why that might be. It's very interesting. The more we understand, the more we can do to ensure that we do the right research to change practice, develop new treatments and influence outcomes for the better, for us all. about 25 days ago

'Our study demonstrates that the survival of patients with salivary gland tumors may depend on the primary tumor site' - differences in prognosis for minor salivary gland tumors vs those in major salivary glands. Really interesting @sakhurram and team. Great work, thank you. twitter.com/sakhurram/stat… about 25 days ago

'Equity: Every Patient. Every Day. Everywhere.' #ASCO2021. Check us out at the exhibitor stalls which opened today. Drop us a business card, DM or email. Hope to 'see' you soon' #salivaryglandcancer #adenoidcysticcarcinoma #aciniccellcarcinoma #PPI about a month ago

Diagnosed with Adenoid Cystic Carcinoma? Does your tumour have a NOTCH mutation? There's still time to take part in this important study of ACC patients which will inform drug regulators & researchers. Specific need for NOTCH+ patients, but all ACCers are welcome 'Understanding the burden of ACC through the eyes of patients.' Please help and take part. Put together by ACCRF, Memorial Sloan Kettering, Hadassah Uni Medical Center & AyalaPharma, it wants to get patient perspectives on the burden of living with ACC. about a month ago

Diagnosed with ACC? Does your tumour have a NOTCH mutation? There's still time to take part in this important study of ACC patients which will inform drug regulators & researchers. Specific need for NOTCH+ patients, but all ACCers are welcome @ACCRF #adenoidcysticcarcinoma 👇 twitter.com/SGCancerUK/sta… about a month ago

Fantastic to have these published and wonderful to see patient co-authorship. Great job Marnie @ACCRF and @ASCO and team! #salivaryglandcancer twitter.com/accrf_org/stat… about a month ago

Shock is often the first emotion upon diagnosis. No surprise there… dealing with the aftermath can be complex. For some, coping with anxiety and dealing with practical day to day tasks, all at the same time, can become overwhelming. * We asked clinical psychologist Dr Elaine Mayon-White to talk about some anxiety management techniques post diagnosis. She talks about being compassionate to yourself, understanding how anxiety works to avoid it spiralling out of control and also understanding how trauma affects the brain. * You can hear what she recommends on our youtube channel- link in Bio. about a month ago

The Northern Ireland, Scotland and Wales Health Review magazines are featuring us this quarter. The article introduces the us, talks about the research work we are doing, the Biobank and our patient network. You can read it here nihealthcare.com/nihr-latest-is… #salivaryglandcancer about a month ago

The Northern Ireland, Scotland and Wales Health Review magazines are featuring Salivary Gland Cancer UK this quarter. * The article introduces the charity and talks about the work we are doing in terms of research, the Biobank and our patient network. * You can read the article by following this link about a month ago

Smiling faces at our gathering. It's so uplifting to meet up with our network. We now span the globe from Asia to the US & cover multiple zoom screens! Thanks to @RobertLMetcalf & Laura Feeney for the fantastic updates @TheChristieNHS about 2 months ago

The latest discovery! New salivary gland organs called ‘Tubarial glands’ have been discovered in the nasopharynx by researchers in the Netherlands. * The nasopharynx is the upper part of the throat behind the nose. An opening on each side of the nasopharynx leads into the ear (eustachian tubes). It is 2-3cm wide by 3-4cm long. * The nasopharynx contains adenoidal fluid to fight infection and also provides a major drainage path for lymphatic fluids, draining into the throat, nose or ears. Torus Tubarius - or eustachian cushion - is a mucous ridge in the nasopharynx behind the auditory (eustachian) tube. The new mucous gland tissue with draining ducts were found over the Torus tuberous hence the name Tubarial glands. * Could sparing these glands during radiotherapy enhance patients' quality of life after treatment? * Read more about the discovery by following the link in Bio. about 2 months ago

Very excited to be hosting our 2nd gathering of 2021 tomorrow with @RobertLMetcalf talking about treatment options for metastatic disease, a Lenvatinib research update for #adenoidcysticcarcinoma patients and break out rooms for #aciniccellcarcinoma & others. Email or DM to join. about 2 months ago

Continuing our series on the major salivary glands, here we see the sublingual gland and its relationship to the mouth. * The sublingual gland is the smallest of the major salivary glands and is located under the tongue. Literally sub = under/ lingua = tongue. The sublingual glands supply saliva to the floor of the mouth. * Tumours are very rarely found in the sublingual glands. about 2 months ago

Do you know the difference or where the fluid comes from? * Saliva is produced in the mouth by the salivary glands. Saliva is the thin watery ‘serous’ substance that keeps the mouth and other parts of the digestive tract moist. It also moistens food and helps you to swallow, diet and ultimately break down food. * Mucus, also called sputum or phlegm, is a thicker substance that is secreted in the lower airways of the the respiratory tract. These airways are called the bronchi and bronchioles. * We are sharing some images and information about the different salivary glands, what they do and what fluids they secrete. Is this of interest to you? Please let us know what else we can help with. about 2 months ago

There are over 20 types of salivary gland cancers. Salivary gland cancer can occur in the salivary glands but they can also happen in other glands around the body, including the vulva and breast. * In this image you can see the trachea which is one of areas where saliva and mucous pass through. Salivary gland cancers occur in the trachea as well as the three main salivary glands. * There is no age, sex or lifestyle link to salivary gland cancers which can make diagnosis all the more difficult. * For more information on salivary glands and cancer please click the link in our bio and follow us here. about 2 months ago

You have told us how important it is to be able to talk to or hear from other people. Not having to explain, or try to make someone understand. * Our meetings are for patients, researchers, clinicians, family and friends. People who understand. People who know what you are going through or what you have been through. We have research updates, Q&As and with online events it can be easier than face to face. * For some, talking about their experience does not comes easy. For others, it is liberating to be in a safe forum. * Our next online event is on Saturday 24th April 2021 with a focus on treatment for mets. DM us for more details or email [email protected] about 2 months ago

RT @OHANCAW: Join the HNCA, @spohnc_1 and @SQZBiotech on April 15, 2021 from 1-2 PM ET for a discussion on clinical trials within head and… about 2 months ago

RT @HeadNeckMD: Results of our study of #ATRA for advanced #ACC at @AACR 2021. No responses but some stabilizing effect, excellent tolerabi… about 2 months ago

Part of our series on explaining the what, where and how of salivary glands, this image shows how the ducts drain the saliva from each of the glands. * The submandibular glands produce 70% of the the saliva in the mouth. They are located on both sides, low in the jaw towards the back of the mouth. Saliva is carried via the submandibular duct (called Warhitin’s duct) entering the floor of the mouth under the front of the tongue. * The largest salivary gland - the parotid gland - produces a watery saliva that helps with digestion and mouth lubrication. The Stenson duct drains saliva from the parotid gland into the mouth around the upper cheeks. about 2 months ago