Salivary Gland Cancer UK
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  • About Us
    • Our Mission - Our 8 aims
    • The Story so Far - Our 5 year impact Report (2024)
    • SGC UK Governance
      • Sally Crowe
      • Shane Draper
      • Emma Kinloch
      • Robert Metcalf
      • Jackie O'Connor
      • Kemi Olaiya
      • Barry Thomas
    • UK Salivary Gland Cancer Research Working Group (UKSGCWG)
    • PPIE (Patient and Public Involvement and Engagement) Work
    • SGC Research Grants
    • SGC Travel Grants
      • Isobel Read shares her experience of ESMO 2025
      • Sian Dobbs shares her experience of ESMO 2025
    • Salivary Gland Cancer UK Mascots
    • Our Partners
  • Treatment Options
    • Diagnosis
    • Surgery
    • Radiotherapy
    • Drug Therapies
      • Drug Therapies - Immunotherapy
    • Clinical Trials
    • Radiofrequency ablation (RFA)
    • Gene profiling or tumour profiling or genomic testing
    • Patient follow up after treatment for SGC
  • Our Stories
    • Alex's story
    • Alison's story
    • Allison D's story
    • Barry's story
    • Christine's story
    • Dawn's story
    • Heather's story
    • Ian's story
    • Jade's story
    • Jamie's story
    • Jev's story
    • Jim's story
    • Kamla's story
    • Karen's story
    • Matilda's story
    • Sarah's story
    • Shane's story
    • Susan's story
  • Patient and Carer Support
    • Anxiety Management Techniques
    • Exercise for the head, neck and shoulder area
    • Returning to Work
    • Tips on communicating with an electrolarynx
    • How can I best support my mother?
    • Kemi shares her advice for supporting a loved one with cancer
    • Radiotherapy Treatment and Late Effects
      • The Late Effects of Radiotherapy Treatment with Emma Hallam, Consultant Therapeutic Radiographer
      • What is Radiation Induced Fibrosis? And How To Reduce Its Effects
      • Tips for Salivary Gland Cancer Patients Living with Radiotherapy Late Effects
      • Top tips for radiotherapy treatment from our network member Dawn
    • Dawn's tips for someone close to someone with Salivary Gland Cancer
    • Pain
    • Quality of Life (QoL) in Adenoid Cystic Carcinoma (ACC) Patients with Dr Joe Haigh
    • Mindfulness Practice with Emma Hallam, Consultant Therapeutic Radiographer
    • Psychological Support for those affected by Salivary Gland Cancers
  • Support SGC UK (and get involved)
    • Join Our Network (and get our newsletter)
    • Donate tissue to the Biobank
    • Our 2025 Events (gatherings and webinars)
    • Donate and help our work
    • Patient – Researcher Trial Discussions
    • Podcasts and Videos
    • Volunteering with SGC UK at a conference or event
    • Salivary Gland Cancer Day - 4th October
    • SGC UK Shareable Resources
    • Leaflets and Flyers
    • Ribbon badges, baseball caps, trolley coin fobs and more in our shop
  • Salivary Gland Cancers
    • A guide to different types of Salivary Gland Cancers
    • Acinic Cell Carcinoma (AcCC)
    • Adenocarcinoma
    • Adenocarcinoma, NOS
    • Adenoid Cystic Carcinoma (ACC)
    • Basal Cell Adenocarcinoma (BCAC)
    • Carcinosarcoma
    • Hyalinising Clear Cell Carcinoma (CCC)
    • Salivary Duct Carcinoma (SDC)
    • Mucoepidermoid Carcinoma (MEC) & Warthin-like MEC
    • Secretory Carcinoma (SC)
    • Myoepithelial carcinoma (MC)
    • Polymorphus adenocarcinoma (PAC)
    • Genetic alterations in Salivary Gland Cancers
      • NTRK genes
      • The RET gene
      • The NOTCH gene
      • The MYB gene
      • Human epidermal growth factor receptor 2 (HER2)
      • Androgen Receptor (AR)
  • Body sites affected by SGC
    • Major Salivary Glands - Parotid, Sublingual and Submandibular
    • Secretory Glands - The Lacrimal Gland
    • Secretory Glands - Bartholin's Gland
    • Secretory Glands - The Lining of the Trachea
    • Skin
    • Nerves in the Head and Neck - Trigeminal Nerve
    • Nerves in the Head and Neck - Optic Nerve
    • Bone Structures in the Face
    • The Spine
    • Breast
    • The Ears
    • The Eye
    • How we taste
    • How we swallow
  • Fundraising for SGC UK
    • Run
    • Walk
    • Swim
    • Some fundraising ideas
    • Paying in the funds you've raised
    • Fundraising at work
    • Leaving a gift in your will
  • Salivary Gland Cancer Science - Research Updates
    • Salivary gland cancer: new classifications and diagnostic challenges
    • Association of quality of life with mortality in patients with adenoid cystic carcinoma using an internationally-validated QoL questionnaire (EQ-5D-5L)
    • Tracheal Adenoid Cystic Carcinoma: why studying it matters - and how biobanks help
    • New study examining disruption of oncogenic pathways in mucoepidermoid carcinoma (MEC)
    • New study reveals late recurrence and low survival rate of adenoid cystic carcinoma of the breast
    • New study using real-world UK data supports the use of HER2-directed therapies for HER2-positive salivary gland cancers
  • UK Salivary Gland Cancer Research Working Group (UKSGCRWG)
    • Research Working Group Members
    • RQ 1. Address the utility of Guidelines for Salivary Gland Cancers (SGC)
    • RQ 2. Assess the variation in histopathology reporting for Salivary Gland Cancers (SGC)
    • RQ 3. Standardise the decision-making processes for patients who have technically operable, Salivary Gland Cancer (SGC), where the surgery carries high morbidity
    • RQ 4. Improve the diagnostic pathway for Salivary Gland Cancer (SGC) patients
Join Our Network Add to Biobank Our Events Donate Shop

Working for those with rare salivary gland cancers.

Acinic Cell Carcinoma (AcCC)
Adenocarcinoma
Adenocarcinoma, NOS
Adenoid Cystic Carcinoma (ACC)
Basal Cell Adenocarcinoma (BCAC)
Carcinosarcoma
Clear Cell Carcinoma (CCC)
Salivary Duct Carcinoma (SDC)
Secretory Carcinoma (SC)
Mucoepidermoid Carcinoma (MEC)
Myoepithelial Carcinoma (MC)
Polymorphous Adenocarcinoma

Carcinosarcoma

Carcinosarcoma accounts for less than 1% of all salivary gland tumours

Mucoepidermoid Carcinoma (MEC) & Warthin-like MEC

Mucoepidermoid Carcinoma (MEC) including Warthin-like MEC

Myoepithelial carcinoma (MC)

Myoepithelial carcinoma makes up less than 2% of all salivary gland tumours

Salivary Gland Cancer Day - 4th October

19 Dec 2025

Raising Awareness for a Rare Disease. Welcome to the WORLD'S FIRST Salivary Gland Cancer Day, being held annually on the 4th of October.

SGC Travel Grants

Apply for funding to travel to a conference or workshop. We welcome all applications that are aligned with our strategy.

UK Salivary Gland Cancer Research Working Group (UKSGCWG)

09 Dec 2025

This working group is to identify the gaps in Salivary Gland Cancer Research, develop strategic priorities for this area of research and deliver them.

Basal Cell Adenocarcinoma (BCAC)

Basal Cell Adenocarcinoma (BCAC) accounts for 1-3% of salivary gland cancers

Polymorphus adenocarcinoma (PAC)

Polymorphous adenocarcinoma (PAC) accounts for around 12% of malignant salivary gland tumours

Acinic Cell Carcinoma (AcCC)

Acinic cell carcinomas account for 1-6% of salivary gland tumours.

Adenoid Cystic Carcinoma (ACC)

Adenoid Cystic Carcinoma (ACC)

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Salivary Gland Cancers
Our Stories
Patient and Carer Support
Support SGC UK (and get involved)
Primary tumour sites: The Lacrimal Gland (Tear Glands) 💧

As we start the new year, let's look at the often-overlooked area where Salivary Gland Cancer (SGC) can occur: The Lacrimal Gland (your tear glands).

Located above each eyeball, these glands produce the fluid that cleans and protects your eyes. They share similar cellular makeup with salivary glands, making them susceptible to SGC types.

Adenoid Cystic Carcinoma (ACC) is the most common SGC type found here. Symptoms of tumor growth can include bulging eyes, a drooping eyelid, and, significantly, pain and numbness- a hallmark of ACC growing along nerve cells.

If you experience persistent eye pain, numbness, or bulging, discuss these specific symptoms with your clinical team.

https://lnkd.in/ekqj9p9W

#SGCUK #AnatomySpotlight #LacrimalGland #OcularHealth #SalivaryGlandCancer #ACC
@sgcanceruk
about 4 days ago Did you know there are over 23 types of Salivary Gland Cancer (SGC)? Today, we’re shining a light on Basal Cell Adenocarcinoma (BCAC), a rare type accounting for only 1–3% of SGCs. BCAC often appears as a slow-growing, painless lump, usually found in the largest salivary gland, the parotid gland Key Facts About BCAC: Who it Affects: Most common in people over 50, affecting men and women equally. Primary Location: Most cases form in the parotid gland (in front of the ear). Challenge: BCAC is often confused with a benign (non-cancerous) tumor called basal cell adenoma, making expert diagnosis crucial. The key difference? BCAC tends to spread into surrounding nerves and blood vessels. Treatment: The main treatment is surgery. While BCAC is generally non-aggressive, there is a risk of the tumour returning, so regular follow-up is essential. Understanding these rare subtypes is the first step toward better patient outcomes. If you notice a persistent, painless swelling, especially in the parotid area, please bring it up with your doctor. Read the full details on our website: #SGCUK #BasalCellAdenocarcinoma #RareCancer #SalivaryGlandCancer #ParotidGland @SGCancerUK
about 6 days ago “When you get to the end of your rope, tie a knot and hang on." — Franklin D. Roosevelt This isn't about finding a sudden, easy answer, it’s about finding that small bit of strength to survive the moment, to hold on to hope, and to refuse to let go. In the context of Salivary Galnd Cancer, this means: Holding on during difficult treatments. Finding support in our community when you feel isolated. Persisting in seeking answers and specialised care, especially when symptoms are complex No matter where you are on your journey, know that you are not alone. Our community is here to help you tie that knot. #SGCUK #Resilience #Hope #PatientSupport #RareCancer #Motivation @SGCancerUK
Understanding the genetic drivers of SGC is fundamental to developing effective, targeted treatments. Today, we're spotlighting a key player: the RET gene.

What is RET, and Why is it a Game Changer?

The RET gene codes for a protein essential for cell growth and nerve development. In several types of SGC, the RET gene becomes faulty, often fusing with another gene (e.g., CCDC6−RET, NCOA4−RET).

This new RET fusion gene acts as a powerful "switch," activating signalling pathways that can drive cancer growth and reduce the efficacy of therapies.

The presence of diverse RET fusions across multiple SGC subtypes makes the RET protein a high-value candidate for targeted therapy.

Evidence of Success: The Libretto trial tested the specific RET inhibitor selpercatinib in various cancers. Importantly, two out of four patients with RET-fusion SGC showed a lasting response.

Promising results have been seen with the multi-target drug cabozantinib for the NCOA4-RET fusion, but specific RET inhibitors like selpercatinib offer the potential for less toxicity and higher efficacy.

🔑 The Call to Action for Patients & Clinicians

Genomic testing (tumour profiling) is essential for salivary gland cancer patients. It's how we identify genetic mutations such as these RET fusions and match patients to the right drugs or clinical trials.

Learn how to get your tumour profiled and contribute to SGC research:

Genomic Testing Info: https://lnkd.in/ebh9-xMU

We must continue to advocate for advanced genomic testing to be standard practice for all SGC patients.

#SalivaryGlandCancer #SGCResearch #PrecisionMedicine #Oncology #Genomics #RETfusion #TargetedTherapy #ClinicalTrials Exelixis Ipsen Takeda Oncology Eli Lilly and Company
@sgcanceruk
about 9 days ago Anatomy Spotlight: The Lacrimal Gland (Tear Glands) 💧 As we start the new year, let's look at the often-overlooked area where Salivary Gland Cancer (SGC) can occur: The Lacrimal Gland (your tear glands). Located above each eyeball, these glands produce the fluid that cleans and protects your eyes. They share similar cellular makeup with salivary glands, making them susceptible to SGC types. Adenoid Cystic Carcinoma (ACC) is the most common SGC type found here. Symptoms of tumor growth can include bulging eyes, a drooping eyelid, and, significantly, pain and numbness - a hallmark of ACC growing along nerve cells. If you experience persistent eye pain, numbness, or bulging, discuss these specific symptoms with your clinical team. #SGCUK #AnatomySpotlight #LacrimalGland #OcularHealth #SalivaryGlandCancer #ACC @SGCancerUK
about 10 days ago Meet Wilson the Dog: Our Loyal Companion and Determined Advocate 🐾 Every journey is better with a friend, and for the entire SGC UK community, that friend is Wilson the Dog! Wilson isn’t just our mascot; he represents the pure, steadfast loyalty, protection, and companionship that defines our support network. Like a true friend, he reminds every patient and family that you’re never alone on this journey. Wilson’s Determined Mission: Awareness! Salivary Gland Cancers are rare, but Wilson is determined to change that. He embodies the sincere effort it takes to raise awareness for a lesser-known disease. He might not be the sportiest chap - his SGC UK shirt is a little tight! - but he shows up every single time. He’ll be right there on the starting line of every fundraising event, ready to do his very best to support research and patient care. When you see Wilson, remember the strength of companionship and the determined spirit required to tackle rare cancers. Show Wilson some love! Tag a friend who has been your loyal companion during a difficult time, or tell us what awareness means to you. #WilsonTheDog #SGCUKFriend #LoyaltyAndSupport #CancerAwareness #SalivaryGlandCancer #Mascot @SGCancerUK
about 12 days ago What an incredible year it has been for the Salivary Gland Cancer community. From the first ever Salivary Gland Cancer Day to every small win, we faced it all together. Thank you to every patient who shared their story, every carer who provided unwavering support, every researcher who worked late in the lab, and every donor who made it all possible. Your courage, advocacy, and generosity are the foundation of everything SGC UK achieves. We are building a stronger, more informed, and more supportive community. Let’s carry this momentum into 2026! Happy New Year from the SGC UK Team! 🎉 @SGCancerUK
A recent study from Germany 👇. An interesting follow up could be including minor salivary glands and non-head and neck primary sites.... @sgcanceruk
One Community, One Cause: Thank You for 2025! 🤝

What an incredible year it has been for the Salivary Gland Cancer community. From the first ever Salivary Gland Cancer Day to every small win, we faced it all together.

Thank you to every patient who shared their story, every carer who provided unwavering support, every researcher who worked late in the lab, and every donor who made it all possible.

Your courage, advocacy, and generosity are the foundation of everything SGC UK achieves. We are building a stronger, more informed, and more supportive community.

Let’s carry this momentum into 2026! Happy New Year from the SGC UK Team! 🎉

#SGCUK #RareCancer #PatientAdvocacy #NewYearNewHope #Gratitude #Community
@sgcanceruk
Cancer Spotlight: Adenocarcinoma - A Family of SGCs

Adenocarcinoma isn't one cancer, but a group of types that can affect the salivary glands, each with unique features. Let's shine a light on four key subtypes:

Polymorphous Adenocarcinoma (PAC): Typically slow-growing, found mostly in minor salivary glands (often the roof of the mouth). It primarily affects women around age 60 and has a good prognosis. Diagnosis is aided by a specific genetic mutation: PRKD1 E710D.

Cribriform Adenocarcinoma (CASG): More aggressive and has a high chance of spreading to the lymph nodes. It features small cysts and is characterised by fusions in the PRKD1, PRKD2, and PRKD3 genes.

Mucinous Adenocarcinoma (MAC): Extremely rare and aggressive, often presenting at an advanced stage in men aged 50s-60s. Research shows a specific genetic abnormality in the AKT1 gene.

Microsecretory Adenocarcinoma (MSA): A newly identified, non-aggressive type, often found in the palate, with a specific MEF2C and SS18 gene fusion.

Understanding these differences is key to effective diagnosis and treatment.

Read more about the subtypes of Adenocarcinoma on our website: https://lnkd.in/erNU2A5Z

#Adenocarcinoma #PAC #CASG #SalivaryGlandCancer #PrecisionMedicine #SGCUK
@sgcanceruk
📢 8 Slots Remaining for HER2-positive SGC patients on the CRUK DETERMINE Trial Arm 04 evaluating trastuzumab and pertuzumab.

As the year concludes, our focus remains sharply on advancing Salivary Gland Cancer (SGC) research to develop new and better treatments.

An opportunity in this direction is the ongoing Cancer Research UK (CRUK) DETERMINE Trial. DETERMINE is an umbrella-basket platform trial to evaluate licensed targeted therapies in unlicensed indications, in rare adult, paediatric, and teenage/young adult cancers with actionable genomic alterations (including common cancers with rare actionable alterations).

DETERMINE Treatment Arm 04 is evaluating trastuzumab and pertuzumab for adult, paediatric, and teenage/young adult participants with HER2-positive malignancies. Within the Treatment Arm, there is a cohort for eligible participants with salivary gland cancer and ERBB2/HER2 amplification or insertion/indels.

There are currently eight “slots” remaining in this cohort.

The trial is actively seeking salivary gland cancer patients with HER2-positivity (ERBB2/HER2 amplification or insertion/indels).

This is found more commonly in Salivary Duct Carcinoma and Adenocarcinoma NOS (Not Otherwise Specified) but is also found in many others. The DETERMINE trial is open to all types of salivary gland cancer patients - it's the HER2-positivity that is key to taking part.

Find Out More & Share: Please share this information widely within clinical and patient networks. Recruitment is expected to continue until 2027.

DETERMINE For Patients: https://lnkd.in/eXuydBU8

#SGCResearch #DETERMINETrial #HER2positive #TargetedTherapy #ClinicalTrials #SalivaryGlandCancer #CancerResearch #SDC #SalivaryDuctCarcinoma #AdenocarcinomaNOS #aciniccell
@sgcanceruk
about 21 days ago As 2025 draws to a close, we reflect on our mission: funding critical research and providing essential support for everyone affected by Salivary Gland Cancer. The need is ongoing, and your donation translates directly into action and answers. See the Impact Your Generosity Makes: £500,000 can fund an in-person clinical trial to test a new treatment for ACC patients. £50,000 funds a dedicated Salivary Gland Cancer researcher for an entire year. £3,000 can cover a vital support meeting for around 50 patients and carers. £75 can cover a travel bursary, removing a barrier for someone to attend our support meetings. £15 a month helps us keep our communication channels running so that no-one is facing salivary gland cancer alone. Every single contribution, large or small, helps us move from research to reality - giving patients access to new treatments and better quality of life. How to Help Now: Donate Directly: Use JustGiving or PayPal Giving Fund. Raise FREE Donations: Use Easyfundraising when you shop online (with retailers like eBay, Boots, and M&S). It costs you nothing! Whether you donate, shop, or simply share this post, you are funding the future of SGC care. Thank you for making a difference. #SGCUK #SalivaryGlandCancer #CharityAppeal #Donate #YearEndGiving #RareCancerResearch @SGCancerUK
about 23 days ago Why Do Taste Changes Happen After Treatment? 🤔 Taste disturbance is one of the most common and challenging side effects reported by Salivary Gland Cancer (SGC) patients after radiotherapy and surgery. We often hear questions about why this happens. Here are the three main reasons why the simple joy of taste can be impacted: Saliva Reduction: Saliva is crucial for dissolving food molecules so your taste buds can even detect them. Reduced saliva flow (dry mouth) means less ability to taste. Direct Taste Bud Damage: Radiotherapy, especially in the head and neck area, can directly damage the delicate cells of the taste buds. Nerve Impact: The intricate network of nerves that carry taste signals to the brain can sometimes be affected by the cancer itself, surgery, or radiation. What helps? Managing dry mouth (xerostomia) is key to improving taste perception. Talk to your medical team about saliva substitutes, and focus on incorporating bold, natural flavours into your diet. Have you experienced taste changes? What is the one tip or trick that has helped you the most? Share your wisdom in the comments below! 👇 #SGCUK #SalivaryGlandCancer #TasteLoss #HeadAndNeckCancer #Xerostomia #PatientSupport @SGCancerUK
about 24 days ago 8 Slots Left for SGC Patients in Major Trial! 🎯 We are helping to find eligible patients for the CRUK DETERMINE Trial (Treatment Arm 04). This trial is evaluating whether licensed targeted therapies (drugs) might also be effective in types of cancer that they are not currently approved to treat. Treatment Arm 04 is evaluating trastuzumab and pertuzumab for adult, paediatric, and teenage/young adult patients with HER2-positive cancers. Within the Treatment Arm, there is a cohort for eligible participants with eligible patients with salivary gland cancer and ERBB2/HER2 amplification or insertion/indels. It is most often Salivary Duct Carcinoma (SDC) and Adenocarcinoma NOS (Not Otherwise Specified) cancers that are HER2+ but the trial is open to any salivary gland cancer patients that are HER2+. There are currently only EIGHT "slots" remaining in the SGC cohort. Your help in identifying and referring patients is vital to ensuring this groundbreaking research continues! ➡️ WHAT YOU CAN DO: SHARE this post. LEARN MORE about the trial's requirements and participating sites: THANK YOU for your support in these vital trials. #DETERMINETrial #SalivaryGlandCancer #SGC #HER2positive #TargetedTherapy #CancerResearch #ClinicalTrials #PrecisionMedicine #CRUK @SGCancerUK
about 25 days ago The festive season can be wonderful, but for SGC patients and their loved ones, it can also be exhausting, overwhelming, or difficult due to dietary changes, fatigue, or ongoing treatment. Remember, courage is also knowing when to rest. This December, we encourage you to: ✨ Prioritise your energy: It’s okay to say no to events or leave early. 🍽️ Adapt the menu: Find joy in soft, easy-to-manage versions of festive favourites. 🫂 Lean on your network: Share how you’re feeling with a trusted friend, family member, or our community. Self-care is not selfish; it’s essential. How do you look after your well-being during the Christmas Season? Share your tips below! 👇 #SGCUK #SalivaryGlandCancer #RareCancer #CancerCare #CancerSupport #SelfCare @SGCancerUK
about 26 days ago One Community, One Cause: Thank You for 2025! 🤝 What an incredible year it has been for the Salivary Gland Cancer community. From the first ever Salivary Gland Cancer Day to every small win, we faced it all together. Thank you to every patient who shared their story, every carer who provided unwavering support, every researcher who worked late in the lab, and every donor who made it all possible. Your courage, advocacy, and generosity are the foundation of everything SGC UK achieves. We are building a stronger, more informed, and more supportive community. Let’s carry this momentum into 2026! Happy New Year from the SGC UK Team! 🎉 #SGCUK #RareCancer #PatientAdvocacy #NewYearNewHope #Gratitude #Community @SGCancerUK
about 27 days ago Looking for a thoughtful gift that actually gives back? Why not choose merchandise from SGC UK? Every purchase helps fund vital research and support for the salivary gland cancer community. It’s the perfect way to share some festive cheer while spreading awareness. Our Top Christmas Gift Picks: For the Active Friend: A Technical Running T-Shirt or Vest (£25.00) – perfect for their New Year's fitness goals! For the Everyday Supporter: A stylish Baseball Cap (£10.00) or an essential Jogger Bottle (£10.00). Stocking Fillers: Affordable and impactful gifts like the 20mm Ribbon Badge (£5.00) or an SGC Pen (£2.50). When you shop with us, you’re not just buying a great gift - you’re contributing directly to patient support meetings and research grants. Shop now and give a gift that truly matters this Christmas! #ChristmasGifts #GiftWithPurpose #CharityShopping #SGCUK #SalivaryGlandCancer #SupportSmallCharities @SGCancerUK
Strategic Investment: Funding the Next Leap in Salivary Gland Cancer (SGC) Care

As the year draws to a close, we are reflecting on our core mission: to fund research and secure essential patient support for everyone affected by Salivary Gland Cancer. Our goal for 2026 is ambitious, focusing on translating research into real-world patient benefit.

Every contribution is a direct investment in the future of SGC diagnosis, treatment, and patient support.

Look at the image attached to this post for our Donation Funds Tangible Outcomes.

We are committed to pushing the boundaries of what is medically possible, ensuring that every SGC patient has access to the best available care and a robust support network. Join us in ending the year strong to guarantee this momentum carries into 2026.

How to Partner with Us:

Direct Pledge: Support our mission immediately via JustGiving or PayPal Giving Fund: \[https://lnkd.in/emU2qz6s\]

Cost-Free Contribution: Generate free donations simply by using Easyfundraising when making online corporate or personal purchases (at retailers like eBay, M&S, and Boots).

Your partnership fuels hope and accelerates the timeline from discovery to patient accessibility. Thank you for making a difference.

#SGCUK #Charity #MedicalResearch #RareCancer #Nonprofit #YearEndGiving
@sgcanceruk
about 28 days ago Focusing on a Brighter Future: SGC Research 🔬 As the year draws to a close, we look ahead with hope - a hope built on dedicated research. One of our core aims is supporting the development of better, gentler treatments. In 2025, we saw incredible momentum with trials like PRONTO, an evaluative study investigating proton beam therapy (PBT) for parotid carcinoma. PBT aims to deliver radiation precisely, potentially reducing side effects like taste loss and dry mouth (key challenges reported by patients!). Every donation and every share of information helps accelerate trials like this, paving the way for improved quality of life and survivorship. Let’s keep pushing the boundaries of what’s possible in Salivary Gland Cancer research. #SGCUK #PRONTOTrial #ProtonTherapy #CancerResearch #RareCancerHope #Genomics @SGCancerUK
about a month ago Cancer Spotlight: Adenocarcinoma - A Family of SGCs Adenocarcinoma isn't one cancer, but a group of types that can affect the salivary glands, each with unique features. Let's shine a light on four key subtypes: Polymorphous Adenocarcinoma (PAC): Typically slow-growing, found mostly in minor salivary glands (often the roof of the mouth). It primarily affects women around age 60 and has a good prognosis. Diagnosis is aided by a specific genetic mutation: PRKD1 E710D. Cribriform Adenocarcinoma (CASG): More aggressive and has a high chance of spreading to the lymph nodes. It features small cysts and is characterised by fusions in the PRKD1, PRKD2, and PRKD3 genes. Mucinous Adenocarcinoma (MAC): Extremely rare and aggressive, often presenting at an advanced stage in men aged 50s-60s. Research shows a specific genetic abnormality in the AKT1 gene. Microsecretory Adenocarcinoma (MSA): A newly identified, non-aggressive type, often found in the palate, with a specific MEF2C and SS18 gene fusion. Understanding these differences is key to effective diagnosis and treatment. Precision medicine is about treating your specific cancer, not just a label. Read more about the subtypes of Adenocarcinoma on our website: #Adenocarcinoma #PAC #CASG #SalivaryGlandCancer #PrecisionMedicine #SGCUK @SGCancerUK
We are proud to share the presentation by Emma Hallam, Consultant Therapeutic Radiographer, focusing on SGC UK Aim 2: Support advances in the understanding of the experience of Living with and Beyond Cancer (LWBC).

Emma runs the UK's first bespoke service dedicated to managing the long-term physical and psychological late effects of head and neck cancer treatment.

The Power of Bespoke Long-Term Care:
🟣Emma’s work is essential for improving patient quality of life post treatment.

Her service utilises:

🟣Digital Technology & PROMs: Using patient-reported outcome measures to proactively follow up with head and neck radiotherapy patients.

🟣Early Intervention: Identifying and managing late effects like lymphoedema and functional deficits early, before they negatively impact daily life.

🟣Innovative Therapy: Pioneering the successful use of Photobiomodulation therapy to reduce radiotherapy late effects, with a focus on future research funding.

Emma’s holistic approach ensures patients can live well and thrive after their diagnosis.

Watch the full video now to learn how personalied care is transforming life after cancer treatment!

➡️ Watch Here: https://lnkd.in/enpRVkMk

#SGCUK #LivingWithAndBeyondCancer #TherapeuticRadiography #QualityOfLife #LateEffects #SGCDay
@sgcanceruk
about a month ago Cost of Living Fund from Get A-Head £150 grants for head and neck cancer patients Our friends at Get A-Head, a head and neck cancer charity, have announced a Cost of Living Fund to support people with head and neck cancer, specifically relating to the added cost of living that comes with a cancer diagnosis. Each grant is worth £150 per person, and the application form is very straightforward, and opens on 5th January 2026. To find out more about terms, please visit their website: @SGCancerUK
about a month ago The festive season is full of great food, but dry mouth (a common side effect of SGC treatment) can make eating a challenge. Don't let it steal your joy! Here are quick tips for managing Xerostomia and enjoying your festive meals: Sip Smart: Keep water or sparkling water with a slice of lemon nearby. Sips between bites can help lubricate your mouth and enhance taste. Go Soft & Saucy: Gravies, creams, soups, and slow-cooked meats are your friends! Avoid dry, crumbly foods (like dry stuffing) that are hard to swallow. Chew for Saliva: Sugar-free chewing gum or candies can stimulate saliva flow before and during meals. Avoid Irritants: Skip alcohol, caffeine, and overly spicy or acidic foods, as they can further irritate or dehydrate your mouth. Try Frozen Treats: Iced drinks, sorbets, or ice lollies offer relief and temporary numbness to sensitive areas. Be kind to yourself and your body this season. Focus on the company, not just the cuisine! #SGCUK #Xerostomia #DryMouthTips #CancerCare #HolidayEating #SalivaryGlandCancer" @SGCancerUK
about a month ago Courage is not the absence of fear, but the triumph over it." — Nelson Mandela This quote perfectly captures the spirit of our Salivary Gland Cancer community. Every diagnosis, every treatment decision, every difficult conversation requires immense courage. It's not about being fearless; it's about acknowledging the fear and choosing to move forward anyway. To all SGC patients, survivors, carers, and researchers: Your strength in the face of uncertainty is a daily triumph. You are demonstrating courage every single day. Let's continue to support each other in overcoming those fears, one step at a time. 💪 #Courage #NelsonMandela #SalivaryGlandCancer #SGCUK #RareCancer #CommunityStrong @SGCancerUK
about a month ago Researchers from the University of Sussex are looking for people with experience of cancer andunintentional weight loss to help test a new website which provides information, advice and support for both parents and carers. They are looking for parents and/or carers, aged at least 18 years, who have access to the internet to take part. The session will take 60-90 minutes. To find out more, please see @SGCancerUK
about a month ago Anatomy Spotlight: The Spine 🦴 The spine is your body's foundation, protecting the vital nerves of the spinal cord and enabling movement - it’s the definition of resilience. For some patients with Salivary Gland Cancer (SGC), the spine can be a site of concern for metastases (secondary growths). While many patients never face this, understanding the spine's structure is key to vigilance. The spine is split into five sections (Cervical, Thoracic, Lumbar, Sacrum, Coccyx), designed to absorb shock. Symptoms of bone metastases can include persistent back pain or a change in the spine's curve, though often they are asymptomatic in early stages. Stay informed, stay resilient, and always bring up new or persistent back pain with your clinical team. #SGCUK #AnatomySpotlight #SpineHealth #SalivaryGlandCancer #CancerAwareness #Resilience @SGCancerUK
The spine is the definition of resilience - it’s your body's foundation, protecting the vital spinal cord nerves and enabling movement.

For some patients with Salivary Gland Cancer (SGC), understanding its role is crucial, as the spine can be a site of concern for metastases (secondary growths).

Key points for vigilance:

The spine has 5 shock-absorbing sections (Cervical, Thoracic, Lumbar, Sacrum, Coccyx).

Symptoms of bone metastases can include persistent, new, or changing back pain or a change in the spine's natural curve.

In early stages, these can often be asymptomatic, highlighting the importance of ongoing monitoring.

Always bring up any new or persistent back pain with your clinical team.

#SGCUK #AnatomySpotlight #SpineHealth #SalivaryGlandCancer #CancerAwareness #Resilience #Oncology
@sgcanceruk
about a month ago URGENT: Share Your Voice on Oral, Dental, Ear, Eye and Nasal Products The Department of Health and Social Care (DHSC) is transforming the listing process for medical devices on the Drug Tariff (Part IX), and patient perspectives are central to the assessment process! This is the first time patient insights will help determine which devices are funded by the NHS based on quality and value to users. Wave 1 Focus: ODEEN Products The initial assessment wave (starting March 2026) focuses on Oral, Dental, Ear, Eye, and Nasal (ODEEN) products, including drops, sprays, ointments, and related accessories. Two Ways You Can Help: 1. The DHSC needs Patient Representatives with lived experience of ODEEN products to join the independent advisory panel. The role is remunerated and the 📅 Deadline to Apply to DHSC: Friday 19 December 2025. LEARN MORE HERE : 2. Patient Insights - If you have experiences with ODEEN devices that you would like to share, please reach out to us at SGCUK. These experiences could inform the advisory panel's work.. 📅 Deadline for Submissions: 16 February 2026. This is a critical moment to ground NHS funding decisions in real-world patient needs. #DHSC #MedicalDevices #PatientAdvocacy #NHSEngland #ODEEN #SalivaryGlandCancer @SGCancerUK
Patient Representatives with lived experience of Oral, Dental, Ear, Eye and Nasal Products (including drops, sprays, ointments and related accessories) are needed for an independent advisory panel.

The Department of Health and Social Care (DHSC) is transforming the listing process for medical devices on the Drug Tariff (Part IX), and patient perspectives are central to the assessment process!

This is the first time patient insights will help determine which devices are funded by the NHS based on quality and value to users.

Wave 1 Focus: ODEEN Products

The initial assessment wave (starting March 2026) focuses on Oral, Dental, Ear, Eye, and Nasal (ODEEN) products, including drops, sprays, ointments, and related accessories.

Two Ways You Can Help:

1. The DHSC needs Patient Representatives with lived experience of ODEEN products to join the independent advisory panel. The role is remunerated and the deadline to Apply to DHSC: Friday 19 December 2025.  https://lnkd.in/ejxcgrdj

2. Patient Insights -  If you have experiences with ODEEN devices that you would like to share, please reach out to us at SGCUK. These experiences could inform the advisory panel's work.. Deadline for Submissions: 16 February 2026.

This is a critical moment to ground NHS funding decisions in real-world patient needs.

In addition, the deadline for the clinical applications outlined below 👇 is now extended to Dec 12th.

#DHSC #MedicalDevices #PatientAdvocacy #NHSEngland #ODEEN #SalivaryGlandCancer #PPI #PPIE
@sgcanceruk
about a month ago In the News: Reliving SGC Day Media Coverage! We are so pleased that SGC Day got significant media coverage! Huge thanks to our PR partners and the patient voices who shared their stories across multiple radio and audio interviews. Hearing our community's voices amplified is powerful. Listen to the highlights and interviews here: #rarecancer #SGCDAY #Salivaryglandcancer #Cancerawareness #RareCancer @SGCancerUK

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