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Alison C's story

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Alison C's story

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In this short video Alison shares her story with us

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about a day ago Emma recently spoke to the Oral Health Foundation about salivary gland cancers to help highlight Mouth Cancer Action Month. If you'd like to listen to the episode, you can find it on Spotify and Apple Podcasts. #OralHealthFoundation #MouthCancerActionMonth #MouthCancerAwareness #MouthCancer #NeckCancer #ThroatCancer @SGCancerUK

about 2 days ago Not long until our next webinar and there's still time to join us 😃 @SGCancerUK

about 3 days ago There are some wonderful clips from our latest gathering in London, during October, on our YouTube channel. And don't forget to subscribe to our channel while you're over there! You'll discover updates on salivary gland cancer, including research breakthroughs, upcoming events, and treatment advancements. Our videos are designed for patients, caregivers, clinicians, and researchers to help our salivary gland cancer network stay informed and empowered. Join our growing community, subscribe today, and help us raise awareness and support for those affected by salivary gland cancer! 💙 #SalivaryGlandCancerCommunity #SalivaryCancerResources #CancerSupportGroups #SalivaryGlandCancerSupport #SalivaryGlandCancerResearch @SGCancerUK

about 6 days ago Tissues that are similar to salivary glands appear all around the body – including in the lining of the trachea – the tube that carries air in and out of the lungs. Adenoid Cystic Carcinoma (ACC) is the most common form of salivary gland-type tracheal cancer - although cancer of the trachea is rare, with only one in a thousand cancer cases being found there. Other salivary gland-type cancers, including Acinic Cell Carcinoma (AcCC) and Mucoepidermoid Carcinoma (MEC), can also present in the trachea. The trachea is between 10 and 15cm long and 2 to 3cm in diameter. It runs from the back of the throat (where it is attached to the bottom of the larynx or voice box) to the carina, where it splits in two, opening out into the left and right primary bronchi. These bronchi then go on to branch into a series of smaller airways that run throughout the lungs. Secretory glands with tissue very similar to that present in salivary glands can be found all across the inner surface of the trachea. They play an important role in protecting the lining of the airway, humidifying the air we breathe in and keeping the lungs healthy. The secretions they produce trap microorganisms, dust and allergens like pollen, which can then be swept back up the airway by tiny hairs called cilia. Cancers such as ACC in the trachea are often misdiagnosed as other respiratory complaints, including asthma and COPD, as breathlessness is one of the key early symptoms. You can listen to Barry and Sarah, two SGCUK members with ACC in the trachea, talk about their diagnosis and treatment on the stories section of our website. #Trachea #AdenoidCysticCarcinoma #AcinicCellCarcinoma #MucoepidermoidCarcinoma #SalivaryGlandCancer @SGCancerUK

It was great to talk and share information about these rare cancers and their unmet needs. Thank you for the support in spreading awareness and thereby contributing to helping us push forwards for better outcomes for patients. @sgcanceruk

about 9 days ago This week is London Global Cancer Week. LGCW aims to improve cancer outcomes by: ✅ encouraging collaboration ✅ raising awareness ✅ convening LGCW provides a space for a variety of speakers and organisations to host presentations on interesting topics around cancer... "Cancer has become a leading cause of death worldwide accounting globally for nearly one in six deaths (nearly 10 million deaths in 2020). The majority of cancer deaths occur in low- and middle-income countries (LMIC). Cancer disproportionately affects people in LMICs where there is a higher chance of late presentation and often limited access to preventative strategies, diagnostics, treatment and palliative care." London Global Cancer Week #RareCancerResearch #RareDiseaseResearch #CancerResearch #SalivaryGlandCancerResearch #MedicalResearch @SGCancerUK

At the EURACAN board meeting in Warsaw last week, we were delighted to present the challenges of Salivary Gland Cancer patients with clinicians, researchers and other ePAGs (Patient Advocacy Groups).

We share many challenges with other rare cancers and we all discussed how we can continue to move forwards together and address the unmet needs.

Emma Kinloch](urn:li:person:EFKjHa5aqr) represented Salivary Gland Cancer UK and the Associazione Italiana Laryngectomizzati (AILAR) on a panel in Warsaw, and was joined in person by @[Eva-Maria Strömsholm and Laura Urena. Kathy Oliver, Ariane Weinman and other ePAGs joined virtually.

It is fantastic to see EURACAN continue to grow and expand. Working across borders is key to moving things forward for rare cancers. It was great to have colleagues from South America and Japan, as well as all over Europe and the UK, in the same room.

All discussions over the two days were lively, engaging and fruitful. There is alot of work to do and it is wonderful to have this group committed to doing it.

#euracan #rarecancer #salivaryglandcancer #rarecancerresearch #salivaryglandcancerresearch #cancer #patientadvocate
@sgcanceruk

about 11 days ago 🌟 Empowering Through Shared Experiences! We are incredibly grateful to those, such as Dawn, who have shared their personal stories of living with salivary gland cancer. Your willingness to be vulnerable and open up about your journey helps to empower others facing similar experiences. Let's continue to support one another by sharing our stories and spreading awareness and hope. #HeadCancerAwareness #NeckCancer #NeckCancerAwareness #ThroatCancer #ThroatCancerAwareness @SGCancerUK

Our Salivary Gland Cancer Research Working Group continues to go from strength to strength.

At our meeting, we were delighted to bring together over twenty-five clinicians, researchers and patient advocates from all over the UK and beyond.

We welcomed six new members and had lively and interesting discussions to develop our current four research priorities, as well as discuss other ad hoc projects.

It's truly inspirational to see so many people who care about these cancers, pushing forward research and working together to improve patient outcomes.

Thank you all!

Robert Metcalf, Sam Rack, Emma Kinloch, Ian S Boon, Jen Remnant, Jim McCaul, Nagehan Uzuner, Ph.D., Ali Khurram, Jarrod Homer, Ho Michael, Nicole Spardy Burr, Ph.D., Puteri Abdul Haris, Ross Cagan, Sammy Rokoszynski, Sally Crowe, Stuart Winter, Rosanna Hunter, Will Ince

#SalivaryGlandCancerCommunity #SalivaryCancerResources #CancerSupportGroups #SalivaryGlandCancerSupport #SalivaryGlandCancerResearch @sgcanceruk

In September we attended a workshop on 'Innovation and Access in RareCancers' hosted by the Cancer Drug Development Forum (CDDF) and the European Organisation for the Research and Treatment of Cancer (EORTC).

Multiple stakeholders from accross the world came together in Amsterdam and online to share perspectives on the current state of play, existing challenges, ongoing collaborations and unmet needs. Discussions included innovative trial designs and potential solutions to improve patient access.

It was fantastic to have regulators, industry, clinicians, researchers and patient advocates all in the same room. It was a friendly, collaborative meeting and a fantastic opporunity to meet those with similar goals from all around the world.

Thanks to CDDF, EORTC and all the speakers for such fantastic presentations and discussions.

Ruth Plummer, Carolyn Hynes, Max Williamson
The Cancer Drug Development Forum (CDDF),

#RareCancers @sgcanceruk

about 13 days ago 🌈 There’s always hope, even in the face of uncertainty. Advances in treatment, increasing awareness, and the support of a caring community all help create a brighter future for those affected by salivary gland cancer. Whether you’ve been diagnosed or are supporting a loved one, know that hope is never out of reach. Let’s continue to raise awareness, fundraise, and spread positivity for those touched by these rare cancers. Together, we can make a lasting difference, one step at a time. #HopeInAction #SalivaryGlandCancerAwareness #YouAreNotAlone #HeadAndNeckPathology #MouthCancerAwareness #MouthCancer @SGCancerUK

The spine gives your body structure, and helps you to sit, stand, walk, twist and bend. It also protects the nerves that travel through its centre in the spinal cord.

Metastases (secondary cancer growths) can occur in the bone of the spine in salivary gland cancers - although it's important to note many patients do not go on to develop such secondary growths.

Symptoms of metastasis in the spine can include back pain and kyphosis (curvature of the spine which causes the back to look more rounded than usual).

However, bone metastases can be asymptomatic, especially in the earlier stages, and so they are often only discovered incidentally during routine scans.

You can listen to Alison C talk about her diagnosis and treatment for ACC spine metastases here. (Begins at 2.50 in the interview.)

The spine is made up of:

• Vertebrae: 33 stacked, small bones that form the spinal canal.

• Intervertebral disks: flat, round cushions with a gel-like centre that sit between the vertebrae acting as the spine’s shock absorber.

• Facet joints: which hold the vertebrae together. Their cartilage allows the bones to slide against each other so we can twist and turn.

• The spinal cord: the group of nerves that travel through the spinal canal. Messages are sent between the brain and muscles via 31 pairs of nerves that branch out through openings in the vertebrae.

• Soft tissue: Ligaments, tendons and muscles, which help connect and support the vertebrae and aid movement.

The spine starts at the base of the skull, and ends at the tailbone, which is part of the pelvis. It is not straight, but curves to form an S shape. This helps the spine to absorb shocks and avoid injury.

It’s split into five sections:

• Cervical spine (neck): seven vertebrae, that allow you to move your head.

• Thoracic spine (middle back): 12 vertebrae which are attached to your ribs.

• Lumbar spine (lower back): five vertebrae that support the upper parts of your spine, connect to your pelvis and bear most of your body’s weight, as well as the stress of lifting.

• Sacrum: five vertebrae that are fused together into a triangle-shaped bone and cannot move independently. It connects to your hips.

• Coccyx: Four fused vertebrae to which pelvic floor muscles and ligaments are attached.

https://lnkd.in/eCpj-Vuh

#Metastases #BoneMetastases #SpineMetastases #SalivaryGlandCancer #Genomics #Pathology @sgcanceruk

about 15 days ago 🎗️ No one should face cancer alone. By donating, volunteering, or simply raising awareness, you can help provide critical resources to those navigating their salivary gland cancer journey. Your support helps fund essential research, offer patient services, and create educational programmes that empower patients and their families. Every contribution, big or small, makes an impact. Together, we can ensure that those affected by salivary gland cancer have the tools they need to face whatever lies ahead. #DonateToday #MakeAnImpact #CancerSupport #HeadAndNeckCancerSupport #HeadAndNeck #RareCancer @SGCancerUK

about 17 days ago 💛 Share your strength and your story. Whether you're a patient, a carer, or someone supporting a loved one, your story can inspire and uplift others in the salivary gland cancer community. Every journey is different, but sharing your experiences offers hope, encouragement, and valuable insight to those who need it most. Let’s build a network of care and understanding, where every voice is heard, and every challenge is met with compassion. Together, we can create a supportive space for healing and hope. #HopeAndHealing #ShareYourStory #HeadAndNeckCancer #HardPalateCancer #SalivaryGlandCancer @SGCancerUK

about 20 days ago At our last gathering in March 2024, Dr Matt Church gave a talk on cancer genomics; whole genome sequencing. You'll find lots of educational talks on salivary gland cancer over on our YouTube channel. Be sure to check it out! #Genome #CancerGenomics #HeadAndNeckPathology #MouthCancerAwareness #MouthCancer #WGS @SGCancerUK

We are delighted to be on the scientific committee for The International Academy of Oral Oncology (@[IAOO2025](urn:li:organization:98382719)) 10th World Congress held in Liverpool, UK from 16-19 July 2025.

A world-class scientific programme and accompanying social programme that is inclusive and accessible to all is planned.

The first truly international head and neck congress to be held in the UK and the largest ever held, with clinicians expected from around the UK and the world.

Abstracts are now invited on the following themes by Friday 17th January 2025.
- Big Data/AI/Machine Learning
- Clinical Trials/ Novel Therapies/Personalised therapy
- Functional Outcomes
- Imaging
- Premalignancy/Early-Stage Disease
- Quality of Life/Patient Perspectives/Multidisciplinary Care/Treatment Pathways
- Radiotherapy/Oncology
- Reconstruction
- Robotics/Technology in Surgery
- Salivary Gland Cancer/Sarcoma/Rare Malignancies
- SLNB (Sentinel Lymph Node Biopsy)
- Surgery
- Tumour Biology/Cancer Research/Pathology

https://lnkd.in/ehnzhqpr

There are also opportunities for sponsorship.

For more information visit www.iaoo2025.com. We do hope to see submissions for salivary gland cancers and don't hesitate to reach out if you would like to collaborate with #SGCUK.

Andrew Schache

#RareCancerResearch #RareDiseaseResearch #CancerResearch #SalivaryGlandCancerResearch #MedicalResearch #SalivaryGlandCancer @sgcanceruk

about 22 days ago 💪 Every step forward makes a difference. Whether you're raising awareness, volunteering your time, or offering support to someone affected by salivary gland cancer, every action counts. By getting involved, you can make a meaningful impact in the lives of individuals facing this diagnosis. Together, we can raise awareness, fund research, and ensure no one has to go through this journey alone. Let’s keep moving forward, step by step, making a real change and supporting each other. #TakeAction #CommunitySupport #SalivaryGlandCancerAwareness #RareCancerResearch #RareDiseaseResearch #CancerResearch @SGCancerUK

about 24 days ago 🎗️ Did you know? Salivary gland cancer is rare, but when caught early, treatments can be more effective. Unfortunately, many people aren’t familiar with the symptoms, meaning they might delay seeking help. Our mission is to change that by educating others about the importance of recognising the signs and acting early. With more awareness, we can help ensure that more people are diagnosed in the early stages, improving outcomes and saving lives. Help us spread the word—awareness is the first step towards progress. #CancerEducation #SalivaryGlandFacts #SpreadAwareness #SalivaryGlandCancerEducation #SalivaryGlandCancer @SGCancerUK

about 27 days ago 🌟 Honour. Support. Remember. Today, we take a moment to think of those that are living with salivary gland cancer and remember those who have lost their lives to it. Every journey is unique, but each one shows incredible strength and determination. Whether you're honouring a loved one’s memory or supporting someone in treatment, your presence matters. Let’s come together to provide hope, strength, and healing for all those affected by this rare disease. #NeverForgotten #CancerCommunity #CancerSupportGroup #HopeAndHealing @SGCancerUK

Mucoepidermoid Carcinoma (MEC) is the most common salivary gland cancer in adults and children.

The cancer affects more women than men and is most likely to develop in the 40s or 50s.

The major salivary glands are responsible for producing approximately 95% of saliva and include the parotid (just below and in front of each ear), the submandibular (below the jaws) and the sublingual glands (under the tongue).

Minor salivary glands produce the remaining saliva and can be found in almost any part of the mouth.

Most MECs form in the parotid gland, although they can also develop in the submandibular and minor salivary glands.

MEC has been reported at distant sites including the breast, lungs, and thyroid.

MEC typically form a slow-growing, painless lump below the ears, and common symptoms include weakness or twitching in the face, pain or tenderness, ear discharge, trouble swallowing and difficulty opening the mouth.

You can find more resources and further information on Mucoepidermoid Carcinoma (MEC) & Warthin-like MEC research and treatment on our website.

https://lnkd.in/eXmybJAn

The Christie NHS Foundation Trust

#MucoepidermoidCarcinoma #MEC #SalivaryGlandCancer #Pathology #Genomics #GenomicsEngland #SalivaryGlandCancerUK @sgcanceruk

about 29 days ago The spine gives your body structure, and helps you to sit, stand, walk, twist and bend. It also protects the nerves that travel through its centre in the spinal cord. It is made up of: • Vertebrae: 33 stacked, small bones that form the spinal canal. • Intervertebral disks: flat, round cushions with a gel-like centre that sit between the vertebrae acting as the spine’s shock absorber. • Facet joints: which hold the vertebrae together. Their cartilage allows the bones to slide against each other so we can twist and turn. • The spinal cord: the group of nerves that travel through the spinal canal. Messages are sent between the brain and muscles via 31 pairs of nerves that branch out through openings in the vertebrae. • Soft tissue: Ligaments, tendons and muscles, which help connect and support the vertebrae and aid movement. The spine starts at the base of the skull, and ends at the tailbone, which is part of the pelvis. It is not straight, but curves to form an S shape. This helps the spine to absorb shocks and avoid injury. It’s split into five sections: • Cervical spine (neck): seven vertebrae, that allow you to move your head. • Thoracic spine (middle back): 12 vertebrae which are attached to your ribs. • Lumbar spine (lower back): five vertebrae that support the upper parts of your spine, connect to your pelvis and bear most of your body’s weight, as well as the stress of lifting. • Sacrum: five vertebrae that are fused together into a triangle-shaped bone and cannot move independently. It connects to your hips. • Coccyx: Four fused vertebrae to which pelvic floor muscles and ligaments are attached. Metastases (secondary cancer growths) can occur in the bone of the spine in salivary gland cancers - although it's important to note many patients do not go on to develop such secondary growths. Symptoms of metastasis in the spine can include back pain and kyphosis (curvature of the spine which causes the back to look more rounded than usual). However, bone metastases can be asymptomatic, especially in the earlier stages, and so they are often only discovered incidentally during routine scans. You can listen to Alison C talk about her diagnosis and treatment for ACC spine metastases here. (Begins at 2.50 in the interview.) #Metastases #BoneMetastases #SpineMetastases #SalivaryGlandCancer #Genomics #Pathology @SGCancerUK

about a month ago 💙 You are never alone on this journey. Whether you've just been diagnosed, are undergoing treatment, or are in remission, our community is here to offer support, understanding, and care. We know the emotional and physical challenges that salivary gland cancer brings, but with the right support, you can feel empowered and resilient. Reach out, share your experiences, and lean on others who have faced a similar path. We are stronger together. #SupportMatters #StrongerTogether #SalivaryGlandCancer @SGCancerUK

about a month ago Team Molly managed to get us into the National Press! Incredible awareness and fundraising efforts by this phenomenal group of people 🥹. Thank you. #TeamMolly #UKCharity #CharityUK #CharityFundraiser #CharityFundraisers #CancerFundraiser @SGCancerUK

about a month ago Lucy Canning, a cancer support specialist, talks to us about her work at Maggie’s in Manchester. Maggie's is a UK-wide charity providing cancer care and support. Learn more about how Maggie's supports cancer patients in our YouTube video now. Maggie's Centres #CancerCare #CancerCommunity #CancerSupport #MaggiesUK #MaggiesCentres @SGCancerUK

about a month ago 🦋 Small symptoms can sometimes mean something significant. Unexplained swelling in the face, pain in the mouth, or even a small lump might not seem serious, but they could be early signs of salivary gland cancer. Don’t ignore the signals your body is sending. Acting early can make a crucial difference in treatment outcomes. If you notice anything unusual, speak to your doctor, and encourage others to do the same. Let’s prioritise early detection to give everyone the best chance of successful treatment. #EarlyDetectionSavesLives #StayInformed #ListenToYourBody @SGCancerUK

Misdiagnosis is extremely common for salivary gland cancer because they are rare and have no risk profile.

Remember that small symptoms can sometimes mean something significant...

Unexplained swelling in the face, pain in the mouth, or even a small lump might not seem serious, but they could be early signs of salivary gland cancer.

Acting early can make a crucial difference in treatment outcomes for patients.

Let’s prioritise early detection to give everyone the best chance of successful treatment.

#EarlyDetectionSavesLives #StayInformed #SalivaryGlandCancerAwareness @sgcanceruk

about a month ago 🧑‍🤝‍🧑 Support can come in so many forms—whether it’s a listening ear, a shared post, or a donation to vital research. Every small action has the potential to make a big difference in the lives of those affected by salivary gland cancer. 🎗️ Salivary gland cancer may be rare, but that doesn’t mean those affected should feel isolated. Let’s continue to come together to build a strong community of care and understanding. Support, awareness, and compassion are key to making sure no one feels alone in their experience. 💙 #CancerSupport #SalivaryGlandCancerAwareness #SalivaryGlandCancerSupport #TogetherWeCan #MedicalResearch @SGCancerUK

about a month ago 📖 Every story shared about living with salivary gland cancer helps others feel less alone. If you or someone you care about has been affected, your experience could provide valuable support and comfort to someone going through a similar journey. We invite you to share your story with our community. 💬 #ShareYourJourney #SalivaryGlandCancerStories #SalivaryGlandCancerUK #UKCharity #CharityUK @SGCancerUK

🎉 Congratulations to Professor Ali Khurram! 🎉

He has been appointed the new Dean of the School of Clinical Dentistry at the University of Sheffield.

Some of you may already know Ali for his wonderful contributions to our community... He is also part of the team leading the UK Salivary Gland Cancer Research Working Group.

Ali is known for his expertise in oral pathology and will be leading the university in its continued pursuit of excellence in dental education and research.

Wishing him all the best in this new role!

https://lnkd.in/eJiY\_DY2

#UniversityofSheffield #OralPathology #DentalResearch #DentalEducation #SalivaryGlandCancerEducation #SalivaryGlandCancerResearch @sgcanceruk

about a month ago 💙 When we support those affected by salivary gland cancer, we are supporting better research, care, and hope for the future. Every act of kindness—whether it’s sharing information, offering a helping hand, or donating—brings us closer to a world where no one faces this illness alone. Your involvement matters. #SalivaryGlandCancerSupport #HopeForTomorrow #RareDiseaseResearch #CancerSupport #CancerCommunity @SGCancerUK

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