Get Involved .

Come along to one of our network meetings. Donate tissue to the Biobank to help drive forward research. Fundraise for us. Contribute to a patient - researcher trial discussion day. There are lots of ways to get involved.

Join Our Network

Join the SGC UK network, and we’ll keep you up-to-date via email with all the latest events and news.

Donate to the Biobank

Donate a sample of your Salivary Gland Cancer tumour. Help drive forward research, and get your own tumour profiled.

Our Events

Our 2021 networking events or 'gatherings' will be held in virtually in January, April, July and October. We also have a series smaller events or 'mini zooms' helf throughout the year.

Donate and help our work

From supporting clinical trials to funding regular networking events, your donation can make a big difference to those living with salivary gland cancer.

Patient – Researcher Trial Discussions

The SGC UK network facilitates a unique collaboration between those living with ACC in the UK, and those researching this rare cancer.

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 days 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 3 days 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 3 days 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 4 days 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 7 days 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 10 days 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 11 days 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 13 days 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 14 days 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 15 days 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 20 days ago

There are three pairs of major salivary glands under and behind your jaw. * The largest of these is the parotid gland, located behind the jaw in front of the ear. There is also the sublingual gland, under the tongue and the submandibular glands under the jaw. * There are also many other (600-1000) tiny salivary glands throughout the mouth, throat, inside the cheeks and in the lips. * Salivary glands produce saliva which keeps the mouth and other parts of the digestive tract moist. Saliva moistens food and help you to swallow, break down and ultimately digest food. The glands can malfunction, become blocked and swollen. * Salivary gland cancers are incredibly rare and complex. There are over 50 types of salivary gland cancer that account for less that 0.5% of new cancer cases each year, globally. * For more information about how salivary glands work check out our feed moving forward and also our website salivaryglandcancer.uk about 22 days ago

Our new running t-shirts and vests designs are in! * We are so excited to share these and look forward to our first event now on May 31st... The Vitality 10km run is around Green Park in central London. * If you are interested in joining @i.trueman and @london_em1 in running that day then DM us. All are welcome and you get a free t-shirt to run in ;-) * Unfortunately the Vitality #BigHalf has been postponed - at the moment until August - but we will still be taking part. DM us if you’d like one of our free spaces! about 23 days ago

Looking after your mental health is something that we are all so aware of these days, not least with lock down having such an impact. * Living with cancer on top of Covid is something that can make life even more difficult. Positive thinking has been shown to make a real difference to your general well being. * In our series of personal stories, Wendy talks about how she always tries to be happy, to make the most of every day. * How are you coping at the moment and can you share your positive message or thoughts to help others? about a month ago

Developing a community of patients, carers, researchers and clinicians is central to our charity. With active participation from all groups, we can better understand the patient experience, and offer an opportunity to learn about current research updates and treatment options. * In our series of personal stories on our website (link in Bio) we have people talking about their experience of coming to our events, either online or face to face. * For some patients, it is the first time they have met others with the same disease and experiences. For others, it is helpful for family members to share their thoughts and feelings with other family members. * You can join our community and hear more about people’s experiences by following the links in our linktr.ee in Bio. * #RareisMany #RareisStrong #RareisProud #RareDiseaseDay about a month ago

We support Rare Disease Day - an observance day that aims to raise awareness, improve access to treatment, and increase medical representation for patients and their families. * The day is an opportunity to bring patients, families, and other stakeholders together. * Today, hundreds of patient-led organisations will host thousands local and national events — allowing the rare disease community to share experiences, offer peer support, and foster ongoing collaborative research. * You can find out more and get involved at RareDiseaseDay.org. #RareisMany #RareisStrong #RareisProud #RareDiseaseDay about a month ago

Living life to the full and appreciating the small stuff may sound like a cliche. When you are living with incurable cancer however, it is something that we hear over and over again. * Listening to personal stories from members of our community, there is a real belief in positive thoughts and actions. Feeling happy. Treasuring loved ones. * Sometimes talking to others who have had the same experience can make all the difference. Especially for family members. * Salivary gland cancers are incredibly rare and here at SGCUK we are working to support the patients and carers that are affected by them. * If you would like to join our community and talk about your experiences, please message us or follow the link in the Bio “Join our community”. #RareisMany #RareisStrong #RareisProud #RareDiseaseDay about 2 months ago

Globally, less than 0.5% of new cancer cases each year are salivary gland cancers. Understandably, people with the disease struggle to meet others who have the same experience or understand what they are going through. * Being so rare also makes funding for research difficult as numbers for trials are small and funding is hard to get. This can potentially restrict patient access to new treatments. * Salivary Gland Cancer UK was set up in 2019 as a unique patient clinician partnership to build an active patient research community. * We are working hard to understand the biology of SGCs. We are building a BioBank of tumour tissue to better understand the cancers and their mutations, to use in our research. * You can donate your tissue to the BioBank and help further our understanding of these rare cancers. * Please follow the link in our Bio to donate your tumour sample and help our work improve patient outcomes. #RareisMany #RareisStrong #RareisProud #RareDiseaseDay about 2 months ago

Salivary Gland Cancer UK are sharing what it means to be RARE this Rare Disease Day 2021 on 28 February and how important being part of a community is. * With only 5 in every million people in the UK diagnosed with Adenoid Cystic Carcinoma, and even lower numbers for other salivary gland cancers, patients might never meet anyone who has the same condition or experience. * We hold regular online and in person events to share updates on research into these incredibly rare cancers as well as patient support and personal stories. * If you would like to join our community and talk about your experiences, please message us or follow the link in the Bio “Join our community” #RareisMany #RareisStrong #RareisProud #RareDiseaseDay about 2 months ago

The most common treatment for salivary gland cancers is surgery, with or without radiotherapy. There are no targeted drug therapies currently available. For some however, because of the location or spread, surgery is not an option. * In our personal stories series, Sarah talks about her experience post diagnosis of ACC in the trachea, of debulking and then a type of radiotherapy called carbon ion therapy. * Carbon ion therpay is not available on the NHS so Sarah crowdfunded her treatment at the University of Heidelberg. * You can hear Sarah’s story and some of our other SGC UK members’ stories on our website (link in bio) about 2 months ago

Salivary gland cancers account for less that 0.5% of new cancer cases each year, globally. There are also more than 50 types of salivary gland cancer. * Being so rare, and so complex, diagnosis can be difficult and information scarce. * Adenoid Cystic Carcinoma is the most common of the rare group of salivary gland cancers. In the UK, 5 people in every million learn they have the condition every year. The primary tumours can start in one of the 3 major salivary glands (which are found in the head) or in the minor salivary glands (found in the head, throat, wind pipe and vulva). * So little is known about these rare cancers that more research is urgently needed. There are no clearly associated risk factors and no links with age, gender, ethnicity or lifestyle. *�Salivary Gland Cancer UK was launched to help further research into these rare cancers and offer specific patient support through regular communication and in person or virtual meetings. Join our community today (link in bio). about 2 months ago

Central to the Salivary Gland Cancer UK philosophy is having patient and clinician collaboration. Having open communication means that patients can keep up to date with current research and treatment options. At the same time, clinicians and researchers can hear first hand the experiences of patients and how the treatment and the disease impact their lives. * Ruth talks about important it is for her to keep up to date with research and treatment options in our personal stories. You can hear her story and some of our other SGC UK members’ stories on our website (link in bio). about 2 months ago

We have free spaces available for you to run in the Vitality Big Half marathon event in London. It takes place on Sunday 25 April so there's plenty of time to get some sponsorship money in. General entries are sold out so here is your big chance! * We don't require a minimum fundraising total to run. We are looking for people who want to run for us and at the same time help us raise valuable funds to help our community of patients and clinicians and improve lives. * Salivary Gland Cancers are some of the rarest forms of cancer. Diagnosis can be massive issue and often the first signs are missed. Salivary Gland Cancer UK works with patients, researchers and clinicians in a collaboration to help drive more research into finding better treatment options. * Please get in touch if you are interested, or share to friends who might be able to run. Message below or email [email protected] about 2 months ago

Barry was diagnosed in 2014 with an ACC tumour in his trachea. As part of our personal stories series, Barry opens up about his treatment and how he coped. * His story includes some very pertinent advice both to himself and he hopes, to help others. He talks about how much will, and is going to happen and what’s important is not to panic. ACC is a very slow growing tumour so you always have time to think, understand and learn as much as you can. * You can hear Barry’s story and some of our other SGC UK members’ stories on our website (link in bio). about 2 months ago

In her video story (available on our website), Ruth talks about how she has had her tumour profiled at The Christie Hospital to help valuable research into the biology of the disease. * Salivary Gland Cancer UK launched as a unique collaboration to address unmet needs in the UK and beyond, for clinicians, researchers and those affected by these rare cancers. * A valuable database is being established to drive forward national and international research in the way of a BioBank at the specialist research hub at The Christie Hospital in Manchester. With greater understanding of the tumours, research can help drive forward new therapies and improve patient care. * Tumour profiling is available to any patient with salivary gland cancers. To find out more or have your tumour profiled please click the link in our bio. about 2 months ago

As part of our personal stories series we spoke to Wendy who was diagnosed with inoperable ACC in 2016. She was given 30 sessions of radiotherapy which unfortunately caused necrosis in her frontal lobe. * Wendy is determined to live her life as happily as she can. Wendy and her husband regularly attend our events and have joined our community. In her story, Wendy talks about how beneficial it is for partners and/or family members to come along and talk to other husbands, wives and children. It can help to open up and find out how others are feeling and dealing with things. * You can hear Wendy’s story and some of our other SGC UK members’ stories on our website (link in bio) about 2 months ago

ACC is such a rare cancer that people can go years without meeting anyone who has had the same experience. That’s why people join the SGCancer UK community - to be able to meet and talk to others who understand. * When Ian was diagnosed he was treated by surgery and then radiotherapy. His story is about minimising radiotherapy side effects and the positive benefits of massage after any head and neck surgery. * Trying to understand his condition and learning as much as possible about the disease was key for Ian and he is keen to drive forward and look for more research into these very rare cancers. * You can hear Ian’s story and some of our other SGC UK members’ stories on our website (link in bio). about 2 months ago

Have you seen this amazing survey from our friends @ACCRF? '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 2 months ago

Love running and looking for a goal? The Vitality Big Half marathon in London is coming up and general entries are sold out… We can help! We have free spaces available. * It takes place on Sunday 25 April so there's plenty of time to get some sponsorship money in. We don't require a minimum fundraising total to run. We are looking for people who want to run for us and at the same time help us raise valuable funds to help our community of patients and clinicians and improve lives. * Salivary Gland Cancers are some of the rarest forms of cancer. Diagnosis can be massive issue and often the first signs are missed. Salivary Gland Cancer UK works with patients, researchers and clinicians in a collaboration to help drive more research into finding better treatment options. * Please get in touch if you are interested, or share to friends who might be able to run. Message below or email [email protected] #bighalf #charityrunning #charityrun #runforcharity about 2 months ago

We have free spaces available for you to run in the Vitality Big Half marathon event in London. It takes place on Sunday 25 April so there's plenty of time to get some sponsorship money in. * General places are sold out and so here is your big chance for the big half! * We don't require a minimum fundraising total to run. We are looking for people who want to run for us and at the same time help us raise valuable funds to help our community of patients and clinicians and improve lives. * Please get in touch if you are interested, or share to friends who might be able to run. Message below or email [email protected] #BigHalf #CharityRunning #CharityRun about 2 months ago