Adenoid Cystic Carcinoma Organization International

08/10/2026

Monday's Message

08/09/2026

The landscape of Adenoid Cystic Carcinoma (ACC) research has shifted toward precise, biology-driven treatments. Thanks to genetic mapping, scientists have identified key drivers like the MYB-NFIB fusion gene and NOTCH1 mutations. We now know there are two separate types of ACC, with one being notably more aggressive than the other. This is why obtaining molecular testing prior to entering a clinical trial has become so essential for patients.

In this insightful clip, Dr. Trisha M. Wise-Draper describes the complex factors researchers evaluate when building clinical trials and shares what patients should expect when participating.
https://www.youtube.com/watch?v=WfFduZQCAJA

Interview with Trisha M. Wise-Draper, MD, PhD author of Amivantamab...

08/06/2026

She's right! Marie from Scotland knows her the facts about adenoid cystic carcinoma (ACC) especially if it occurs in the breast.

ACC of the breast (ACCB) is NOT breast cancer; it a secretory gland cancer that commonly occurs in the head or neck. This is important because doctors who treat ACCB as a breast cancer may recommend chemotherapy as part of your treatment and this could be unnecessary.

Learn more facts here www.accoi.org



https://www.instagram.com/reels/DWEETAPCPVk/

08/04/2026

Monday's Message. It's a breakup!

07/29/2026

More patients with adenoid cystic carcinoma (ACC) are seeking proton radiation (vs photon radiation) due to its unique ability to precisely target tumors and spare normal, surrounding healthy tissue.

But can a patient receive a second course of radiation therapy to the same area of the body should the cancer return?

In this recent study, researchers present one of the largest retrospective analyses on ACC patients with recurrent and previously irradiated ACC. Proton therapy, with its ability to spare normal tissues (via the Bragg peak), may offer a promising and safe re-irradiation approach.

https://pubmed.ncbi.nlm.nih.gov/41623354/

07/24/2026

Managing Adenoid Cystic Carcinoma (ACC) means being well-informed and staying one step ahead. Due to the nature of ACC, staying close to your medical team for long-term (and life-long) monitoring is one of the most powerful things a patient can do.

Typically, patients have scans every 2 to 3 months for the first couple of years after their diagnosis. If a patient shows "no evidence of disease" those checks usually space out to every 6 to 12 months.

Patients need to feel free to discuss a monitoring plan and tailor the frequency of scans to the tumor's specific location, stage, grade, and treatment history. Read more here https://accoi.org/long-term-monitoring/

Adenoid Cystic Carcinoma can be closely watched and treated, but sometimes it never completely goes away. Many patients may never experience what is called a ‘local recurrence‘ of the primary tumor site after being treated with surgery and radiation. However, the risk of a recurrence, especially...

07/21/2026

At 44, Sarah was newly married, newly promoted, and preparing for a pregnancy when her life was upended by a dual diagnosis: two simultaneous, unrelated cancers. Her incredible journey of surviving adenoid cystic carcinoma and breast cancer—and defying the medical odds to welcome her daughter, Rory—is told here with raw honesty and the fierce resilience of a mother who refused to let go of her dream.

Today, Sarah uses her experience to serve as an author, speaker, and advocate alongside organizations like the American Cancer Society American Cancer Society Sarah Brubacher McDonald

Sarah McDonald, Mission Impact Chair share her cancer journey, and ...

07/11/2026

Your voice is your identity.
When cancer patients lose their voice box to a laryngectomy, the impact is devastating. Compared to those who retain their speech, these patients experience higher rates of long-term depression, a 30% job loss rate, and profound social isolation.

While most doctors and speech therapists don't realize it yet, AI speech software can now help head and neck cancer patients—including those with adenoid cystic carcinoma—keep their own unique voices.

Read more about how ACC patient, Sonya Sotinsky is using her newfound voice to help others in our community.

Thank you, Sonya!
Sotinsky

Sonya Sotinsky recorded herself talking and reading books to preserve a critical element of her personality: her voice. After surgery for oral cancer, AI used those recordings to re-create her voice.