Adenoid Cystic Carcinoma Organization International

10/22/2026

Navigating routine follow-up scans can be one of the most stressful parts of living with Adenoid Cystic Carcinoma (ACC).

After an initial diagnosis, doctors typically schedule surveillance scans every 3 months or so to monitor everything closely. Because everyone’s journey is unique, these imaging sessions are often spaced out to every 6 to 12 months after the first year if there is no evidence of disease. However, if metastasis is suspected or occurs, the frequency and specific type of scans will likely change.

Depending on your exact situation, your care team might utilize several of the different medical imaging tools shown below—ranging from Pet/CTs to MRIs. Learn more here
https://accoi.org/long-term-monitoring/

10/12/2026

Monday's Message
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10/10/2026

Today is World Mental Health Day, and this year’s theme—“Lived experiences heard: real voices, real change”—reminds us how vital it is to listen to those navigating complex medical journeys.

For our community, managing mental health is a deeply critical, yet often unseen, part of living with Adenoid Cystic Carcinoma (ACC). Because ACC is a rare, slow-growing cancer with a long-term trajectory and a persistent risk of recurrence years down the road, it places an enduring emotional weight on both patients and their loved ones.
Your story, your vulnerability, and your voice matter. No one should have to carry the weight of this diagnosis or the transition that follows alone.

10/07/2026

Adenoid Cystic Carcinoma is usually slow-growing and composed of cribriform (Swiss-cheese like) or tubular cell patterns. However, the solid type features cells growing in dense, unorganized sheets and can carry a more aggressive clinical course and higher grade.

Fast-growing or high-grade ACC can have a higher risk of local recurrence and distant metastasis—most commonly to the lungs, bones, liver, or brain.

This subtype1 is often linked to specific secondary genetic alterations, such as NOTCH1 mutations, alongside the core MYB-NFIB gene fusion.

Today, there is hope! New drugs—specifically Antibody-Drug Conjugates (ADCs) are being tested in clinical trials built specifically for patients with aggressive, high-grade, or solid-pattern ACC.

ACCOI is grateful for emerging research highlighting the need for personalized therapies for our ACC community

10/06/2026

This week, on Salivary Gland Cancer Awareness Day, family and friends honored the memory of an extraordinary Patient Champion, Molly Midgley-Hellend.

At just 26 years old, Molly was diagnosed with an aggressive form of Adenoid Cystic Carcinoma (ACC). Even when faced with the heartbreaking news, Molly was determined to raise awareness and support research.

Family, friends, and former teachers rallied by her side, forming what we know as "Team Molly." Together, Team Molly has poured their hearts into incredible physical challenges across the UK—including the Sheffield Half Marathon, the York Marathon, and massive cycling events.

Thank you to Team Molly, who have now raised over £110,000.
Your dedication keeps Molly’s beautiful legacy alive.

Read more about Molly's story here: https://ow.ly/JrQB50ZTzxN

09/26/2026

In Canada, Vania’s treatment journey took her far from home after she was diagnosed with adenoid cystic carcinoma (ACC).

For many ACC patients, accessing advanced cancer treatments means traveling hundreds of kilometers and temporarily leaving behind family, friends, and familiar routines.

For Canadians, that journey is made a little easier thanks to the incredible support of Hope Air. Hope Air believes that every Canadian should have access to the healthcare they need, regardless of where they live or their financial situation. They are dedicated to easing the stress of medical travel by providing families with free flights and accommodations.

Learn more about HopeAir here: https://hopeair.ca/about/
Learn more about other patient resources: https://accoi.org/patient-resources/

Hope Air Wings Flights of Hope Angel Flight Soars, Inc. Miracle Flights

09/24/2026

For years, Tanja’s voice was her world, her career, and her core identity as a professional singer and actress. But in 2020, her life shifted overnight when she was diagnosed with adenoid cystic carcinoma and underwent a total laryngectomy.

Losing the very instrument she built her life around was a devastating challenge. Yet, transformation often lives on the other side of our hardest moments.

Today, Tanja and her friends just conquered the grueling Yorkshire Three Peaks Challenge—a demanding 24-mile (38.6 km) trek across three mountain summits. Every step raised awareness and support for everyone impacted by salivary gland cancer.

Cancer may change our bodies or alter our paths, it can never take away our strength.

Thank you, Tanja!

https://bbc.com/news/articles/cyvz6z691z2o?fbclid=IwY2xjawUhTANleHRuA2FlbQIxMQBwZG9mAXNydGMGYXBwX2lkEDIyMjAzOTE3ODgyMDA4OTIAAR74Dk3K9hqVZtGFx4RTX0ZFKIH_VFxVsoanghsjZFdN1kGo8c74oJh3_9RWtg_aem_UgaLJ--IUo9uVjoEAeZIbQ

Tanja Bage has continued to perform on stage despite having her voice box removed during treatment.

09/17/2026

By the time many patients finish radiation treatment, they're ready to leave their radiation mask behind. Some people run them over, some people shoot em up and some people use them for Halloween.
For Stephen, he writes:
"This was harder to do than it seems. I held onto this for 12 years like I never wanted to move on.. but it's well overdue. So many emotions right now. But mostly relief "you've changed me but will never control me."

What did you do with your radiation mask? Share with us here.

09/16/2026

In The Young Tongues Podcast, Dr Patrick Ha, Chief of the Division of Head and Neck Surgical Oncology, UCSF explains the basics of adenoid cystic carcinoma (ACC).

He also explains why some people with metastatic ACC may be advised to have regular scans and active surveillance rather than starting treatment straight away.

"We know the cancer is there… but for now, we’re going to watch it.” For most of us, that sentence feels completely counterintuitive. Surely if cancer is found, the best thing is to treat it as quickly as possible?"

But with adenoid cystic carcinoma (ACC), things can be very different.

Listen to the latest episode of The Young Tongues Podcast now on all major podcast platforms or our YouTube Channel: https://www.youtube.com/watch?v=yjzU101HcLo

Most conversations about tongue cancer – including many on The Youn...

09/13/2026

Integrative Oncology. What is it?

After Sarah McDonald was diagnosed with adenoid cystic carcinoma and breast cancer, yoga and meditation carried her through her cancer journey.

Today, Sarah's honesty and resilience is inspiring filmmaker Nancy Svendsen in her new documentary, 1 IN 3, a film that reimagines what cancer care can be.

In this new film, Nancy explores the growing role of integrative approaches - including meditation, yoga, mindfulness, acupuncture, music therapy and nutrition - alongside conventional cancer treatment.

Nancy's team will film Sarah and her family - capturing the real moments, relationships, and humanity that make 1IN3 so personal and universal at the same time.
Watch for previews: https://www.1in3film.com

https://vimeo.com/1181379315/e5be632c5f?
Sarah Brubacher McDonald

The film looks at how leading cancer centers treat the whole person — combining conventional treatment with evidence-based integrative therapies. Every patient deserves to be offered integrative treatments from the very beginning of their diagnosis.