Blog by Trish Vickery
On April 11, the Dana Farber IBC team held their annual patient forum; the virtual format allowed patients near and far to join. The day included informative medical presentations, followed by an expert roundtable, with a new feature – breakout groups for Stage III and Stage IV patients. The day wrapped up with the social work group, which is always a terrific way to debrief and process what we learned.
Dr. Filipa Lynce, director of Dana-Farber’s IBC Program, kicked off with updates on current research and clinical trials.
Next, Dr. Faina Nakhlis, associate director of Dana-Farber’s IBC Program, discussed surgical topics, including the current state of axillary lymph node dissection. She noted studies are using pre-op assessment after chemo and targeted therapy, but the correlation is not high enough to feel confident in limiting node removal at this time.
She also addressed immediate reconstruction at time of surgery. Obstacles continue to be IBC’s unique skin involvement, and higher dose radiation regimen; as such, immediate reconstruction is still not recommended at this time. She reviewed some past studies, noting limitations including older data, incomplete treatment information, and the potential some of the patients did not have IBC.
Next, Dr. Paolo Tarantino educated us on antibody drug conjugates (ADCs) and their role in treating IBC and other cancers. He compared ADCs to Legos, noting they are modular, and pieces can be added as needed. An example of utility would be adding to chemo to ‘scoop up’ excess chemo spillover, which would help reduce side effects. In the Q&A, he observed ADCs using slow release are particularly helpful when treating brain metastases allowing passage through the blood/ brain barrier. He is very enthusiastic as he sees many opportunities in oncology and beyond.
Dr. Ilana Schlam then reviewed possible applications of ctDNA (circulating tumor DNA) in early breast cancer with a focus on IBC. She noted while there is a lot of potential, researchers are studying how best to use the technology. She reviewed studies that are comparing ctDNA at key points in the treatment cycle; it can inform as to how well treatment is working, and correlate with outcomes. She highlighted the DARE study that is surveilling MRD (minimal residual disease) for a cohort of 1000 patients using Signatera Exome. While ctDNA can identify patients at high risk for relapse, challenges include determining proper testing intervals, and what intervention strategies might be.
Dr. Lindsey Anstine of Susan G. Komen then discussed the new ICD codes for IBC and implications for treatment and research. She began with the barriers that have slowed progress in diagnosis and treatment for IBC. These varied from lack of funding, different presentation from other breast cancers, no clear diagnostic criteria, and fast progression. Komen was instrumental in driving a collaboration that included MD Anderson and Dana Farber to develop a diagnostic scorecard tool. Once the tool was developed, it was validated with patient data and is now being used at many institutions.
She then provided an overview of the significance of the new ICD (International Classification of Diseases)-10 codes for IBC. It is far-reaching, impacting many aspects of billing, administration, clinical and patient care, public health, research, policy, and planning. Patient data will now be identifiable and searchable. It will be key to educate providers to ensure they are aware of the codes and how to properly assign them.
Next, we had a roundtable to discuss management of side effects, moderated by Dr. Fanucci, a new member of the IBC Program. The panel addressed hot flashes, neuropathy, pain management, and lymphedema (LE) and included NP’s Heather Murphy and Ryan Tamargo and Occupational Therapist Angela Serig. Many helpful tips for patients were offered. Angela highlighted that for IBC patients, full resection of lymph nodes increases risk of LE by 20-40%, while radiation increases it a further 50% with risk highest the first three years after treatment. She noted that studies using GLP’s for LE have been promising so far.
The Stage III and Stage IV breakout groups were informal and provided additional opportunities for questions. The Social Work group session allowed patients to compare notes on what they had learned, share how it had resonated for them and nicely rounded out the day.
The presentation and roundtable recordings will be available soon on the Dana Farber Inflammatory Breast Cancer site, as in the past. All are welcome to attend the forum; please reach out to me at trish@theibcnetwork.org if you are interested in joining next year.