Salivary Gland Cancer UK

We are Salivary Gland Cancer UK

We’re a new charity for those with rare salivary gland cancers such as Adenoid Cystic Carcinoma. Our aim? To build a UK-wide information and support network for people affected by, or treating, these conditions.

We organise regular networking meetings. We give you opportunities to input into ground-breaking research projects. We’re working to improve access to the newest therapies. Starting with Adenoid Cystic Carcinoma initially, our scope will broaden to include other salivary gland cancers over time. We’re focused on patients and clinicians working together to drive research and increase knowledge. So why not join our network?

0.3%

0.3% of all cancer cases globally are salivary gland cancers

In the UK, 5 in every million people learn they have ACC every year

'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 day 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 15 days 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 15 days 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 15 days 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 15 days 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 17 days 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 18 days 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 20 days 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 22 days 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 22 days 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 a month 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 a month 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 a month 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 a month 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 a month ago

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

RT @UCL_HNAC: IH&NWS Catch Up Service ⏪ If you missed @Prof_McGurk lecture on the the parotid, watch it for #Free until the end of Apr her… about a month ago

“I’ll probably die from cancer, but it ain't gonna kill me" Pat inspired many with his 'ridinon' to raise awareness of rare cancer. He will be missed by the #adenoidcysticcarcinoma patient community. To his family & friends: we are so very sorry for your loss. Rest in peace Pat. twitter.com/septemberluv90… about a month ago

Today is World Health Day and this year’s campaign is focused on building a fairer, healthier world. * With the Corona virus global pandemic still going on, join us in thinking about all the nurses and carers in the world who have worked so hard; and those people who have access to only the most basic of health care. Corona virus has shown how access to healthcare and support services - and vaccines - is not equal. In the same way access to other health services and cancer treatment depends on where you are in the world. * We are celebrating today in recognition of the work that the WHO do, and the commitment to ensuring that everyone, everywhere can realise the right to good health. about a month ago

ACC research update from @JeffKaufmanTwit @ACCRF at our Jan-21 gathering now available to watch youtube.com/watch?v=CuNLXm…. Our next meet is April 24th to discuss treatments for metastatic disease. DM or email to get the joining details #salivaryglandcancer #adenoidcysticcarcinoma about a month ago

Really enjoyed watching this - thank you @davidrose88 @M4RareDiseases. Couldn't agree more with 'the diagnostic odyssey' comments & fantastic platform in 'Rare Disease 101' for teaching medics about rare diseases, their patient communities & the important role they play 👋👋 twitter.com/davidrose88/st… about a month ago

Continuing our series on explaining the salivary glands, this image shows the parotid gland and its intrinsic relationship with the mouth * The parotid gland produces a watery saliva that helps with digestion and mouth lubrication. The gland is located around the side of the jaw, in front of and around the ear as well as in the roof of the mouth. It produces a watery saliva that drains into the mouth around the upper cheeks keeping the mouth lubricated for speech and swallowing, as well as helping with food digestion. about a month ago

Managing stress levels can be difficult, especially when dealing with underlying health conditions in these uncertain times. * The Covid vaccine offers some hope of a new future normal but in the meantime, stress can have an enormous impact on mental and physical well being. * Stress can manifest in so many ways, such as jaw clenching, headaches, shoulder and neck tension or just feeling overwhelmed. * Dr Elaine Mayon-White is a counselling psychologist and she has done a podcast talking about managing anxieties and techniques that could help. * You can listen to her podcast by following the link in our bio. about a month ago

The parotid gland seen here above is the largest of the pairs of salivary glands. * The location of the parotid gland is intrinsically linked to the facial nerves - as can be seen from the image. The facial nerves across the parotid gland controls movement and expression. This makes any surgery of the parotid very complex. * The parotid gland produces a watery saliva that drains into the top of the mouth at the upper cheeks. The amount of saliva in the mouth produced by this gland goes from 10% up to 25% when eating. * About 85% of salivary gland tumours occur in the partoid gland. They are very slow growing and the majority or parotid tumours are benign. If surgery is required it is called a parotidectomy. * For more information on treatment options see our website - link in our bio. about a month ago

RT @PoorFrankRaw: I was video'd & appear on the @SGCancerUK web site talking about my diagnosis and treatment. Salivary- and secretory-glan… about a month ago

Salivary gland cancers are incredibly rare and complex. It is even rarer to find someone else who has the had same diagnosis or patient experience. * It is for this reason that we are developing a bank of personal stories for people to listen to and share to help build a better understanding of the disease and patient experience. * By listening to and sharing personal stories, others can learn, understand and perhaps be comforted. * We already have some patient videos on our website and we are looking for more. * If you would like to share your personal journey to help others, please do get in touch (either DM or email [email protected]) about a month ago

RT @London_Em1: Calling all #headandneckcancer researchers 👇 twitter.com/NCRI_partners/… about a month ago

As part of Healthcare Science Week we are sharing some images and information about the different salivary glands and what they do. * The three major salivary glands can be seen above. The largest of these is the parotid gland. It wraps around the back of the jaw on either side of the face, in front of and beneath the ear. * The parotid gland produces saliva which is serous (watery and thin). This drains into the top of the mouth at the upper cheeks. * About 85% of salivary gland tumours occur in the parotid gland. Most are benign. * The submandibular glands are located just under and deep in the jaw towards the back of the mouth. The submandibular duct carries the saliva from the gland and enters the floor of the mouth under the front of the tongue. * It is these glands that produce 70% of saliva in the mouth. They can become blocked and form salivary duct stones if you are persistently dehydrated. Only about 10% of tumours start in the submandibular glands. * The two sublingual glands are located under the tongue and carry saliva to the floor of the mouth. Tumours are very rarely found in the sublingual glands. about a month ago

Working for those with rare salivary gland cancers. Starting with Adenoid Cystic Carcinoma

We are Salivary Gland Cancer UK

Working for those with rare salivary gland cancers.
Starting with Adenoid Cystic Carcinoma