Metastatic Breast Cancer: Helping Us Help You


For two days at the end of next week, I will be attending a brain-storming conference to discuss ways to help mitigate the collateral damage experienced by people with metastatic breast cancer. This discussion will include patient advocates who have MBC, and patient advocates who have had non-metastatic breast cancer and are clinicians who treat cancer patients in our practices. As many of you already know, I belong to the latter category.

Some months ago, the Dr. Susan Love Research Foundation launched the Metastatic Breast Cancer Collateral Damage Project [MBCCD Project]. Initially, the project began by developing a survey to gather information about collateral damage from those who live with it. Then, clinicians like myself, who have had breast cancer and who treat patients with breast cancer, were asked to step forward and volunteer to help. Recently, the survey study was conducted, inviting people with MBC to describe the impact of MBC on their lives and provide details of all the types of collateral damage it has caused. A Health of Women (HOW) Study™ questionnaire was used to document this damage. Once the survey results were collected, DSLRF arranged for the conference I described above, and I was invited to participate.

Based on the survey results, an agenda has been drawn up to help guide those of us who will attend the conference. We will be meeting to review everything that has been shared by survey participants, and to work on developing concrete recommendations to improve the quality of life for people living with MBC. The goal is to come up with specific recommendations, based on our personal and clinical experience, and to share them widely.

I work as a physical therapist. Oncology rehab was one of my clinical internships in grad school. I have worked in many settings over the past twenty-five years, but for over a decade now, I have worked for a visiting nurse agency affiliated with a local hospital and healthcare system, providing physical therapy treatment in patients’ homes. I help all kinds of patients with all kinds of problems that often extend beyond the scope of physical therapy. That’s how it is in homecare. Both nurses and physical therapists serve as case managers for patients, which means that we need to ensure that our patients get help with all of their needs — medical, pharmacological, emotional, and financial. We do this by knowing when to bring in other clinicians who have specific expertise and by advocating for our patients with their physicians. We also have a palliative care team to help cancer patients and others with serious illnesses to manage pain and collateral damage of all kinds. I’m very lucky that I get to help advocate for and assist patients in such concrete ways. Believe me, when you treat someone in her home, you really see the impact that cancer has on a person’s energy, daily life, family, and finances in a way you cannot in any other setting. Having been a breast cancer patient myself really helps, too. Consequently, I feel that I have a lot to contribute to this next phase of the MBCCD Project. And, incidentally, I am looking forward to meeting folks in person whom I’ve only known in cyberspace, like Lori, who blogs at Regrounding. A wonderful perk!

I can tell you truly that the most important thing I do to be a good clinician, and a good friend, for that matter, is to listen. So, thank you to all those who completed the MBCCD survey. Thank you to my friends with MBC who have shared so many of their personal struggles with me and trusted me for advice, support and friendship. Thank you to my amazing patients who have taught me much more than I’ve taught them. And thank you to my blog readers. I want to invite anyone who reads this now to help me, to help us help you, by commenting here on the blog or on social media, by emailing me at kk@accidentalamazon.com, or by messaging me on Facebook or Twitter. The more we know and understand, the more and better help we can provide. I’m listening.

pixelstats trackingpixel
Share
This entry was written by Kathi, posted on Saturday, November 05, 2016 at 12:11 pm, filed under Making A Difference, Metastastatic Breast Cancer and tagged , , , . Bookmark the permalink . Post a comment below or leave a trackback: Trackback URL.

Leave a Reply