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ACCRF Patient Webinar Follow-up - March 2023

Thank you to everyone who attended our 4th ACCRF Patient Webinar: Dealing with ACC Lung Metastases. We are so grateful to all those who submitted excellent questions, and to Dr. Renata Ferrarotto and Dr. Jonathan Schoenfeld for taking the time to share their expertise and guidance on lung metastases.


If you were unable to attend, or you would like to rewatch or share the webinar, you can find the recording here along with previous webinars in our Patient Webinar Archive.

Some key takeaways from the discussion:


  • Surveillance: After initial surgical and/or radiation treatments of the primary tumor, regular MRI and CT scans are crucial tools in identifying and monitoring new or growing recurrences.


  • Natural History of Lung Metastases: A preliminary ACCRF-sponsored study shows that most patients (82%) have a constant tumor growth rate for the period before their first treatment of their lung metastases. The median time to progression (tumor growth of at least 20% or the development of new tumors) is about 9 months.


  • Radiation Treatments: While there is no single standard of care for lung metastases, new research from some non-ACC tumor types indicates that patients with 5 or fewer metastases may live longer with radiation treatments. ACCRF is co-sponsoring a clinical trial of SBRT in such “oligometastatic” ACC patients.


  • Systemic Treatments: Multikinase inhibitors such as Lenvatinib and Axitinib are considered the most active drugs for lung metastases. However, for patients with high tumor burdens and rapidly growing metastases, traditional chemotherapy combinations including cisplatin may be appropriate.

We strive to bring you the most up-to-date and relevant information in ACC research and treatment, and we value your feedback. Please feel free to share any thoughts on our most recent webinar or any topics you would like to see covered in the future by emailing info@accrf.org.


For further information about the foundation’s work and ways you can support these efforts, visit our website accrf.org.



Thank you for your continued support of ACCRF!


Jeffrey Kaufman, Co-Founder and Executive Director

Nicole Spardy Burr, PhD, Director of Research





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