It seems like a very long time ago (prior to the Komen-Planned Parenthood controversy), but late in January, I had the pleasure of meeting nine other metastatic breast cancer patients from across the United States during a meeting at the Komen headquarters in Dallas, Texas. Our common goal was to share with the staff of Komen the concerns and needs of metastatic breast cancer patients whom we had met along our journey. Among us were newly diagnosed metastatic patients and others who have been living with the disease for some time.
Over a day and a half, we shared with the attentive Komen staff present in the room what it was like to live with metastatic breast cancer and what, we perceived, were the unmet needs of patients. The conversation was very frank and revealing. We discussed how metastatic patients relate to the word “survivor;” the pink ribbon; and the awareness activities that go on each year in October. Our full experiences were shared—including the great need for more research to find new treatments to extend life, the disparities in access to quality health care, the costs of ongoing treatments, the need for good information to make treatment decisions, and the need for appropriate support groups to help us deal with psychosocial issues.
Though there was no specific action plan formalized at the end of the meeting, I feel confident that the Komen leadership will review and discuss what was shared. I am hopeful a plan to address the unmet needs of metastatic breast cancer patients will be developed in the future. More updates to come…
In the meantime, I made nine new friends who are amazing!
All best wishes,