*This post was written by Marie Borsellino, B.S.N., R.N., O.C.N., oncology nurse navigator for the Managing Cancer at Work Program
As we close international breast cancer awareness month, I would like to honor those women and finally the organizations that support those living with metastatic breast cancer. We know that in 2013, an estimated 232,340 new cases of invasive breast cancer were expected to be diagnosed among US women, as well as an estimated 64,640 additional cases of in situ breast cancer. Of those 6-10% of new breast cancer cases are Stage IV. Of all breast cancer cases diagnosed, 20-30% will become metastatic.
Of those living with metastatic disease, especially during October, there is a sense of isolation. They can actually be upset with the marketing strategies developed to promote awareness. When they attend support groups they can be accused of not being positive enough or even worse be perceived as a quitter. The reality, I am here to report could not be further from the truth. I have witnessed the strength, poise, and resilience of these men and women first hand. They are warriors like no other.
Years ago, when I was new in my role as a breast health navigator, during October, I attended a monthly support group. At the end of the meeting I was cornered by three women whom I knew all had metastatic disease. They pleaded for me to help them establish a group where they could freely talk about their issues. They eloquently laid out their case: Not one of them was looking to “give up” but their needs were plainly different. They were planning for a dignified farewell in case the new clinical trial or protocol being tried did not work. This group of women were determined to make the most of their time and needed a platform to vent about their issues. They didn’t want to “bum” out the other patients with the early stage treatable breast cancers that we, in this country, are so good at treating or perhaps if the critics are correct, over-treating. They wanted to talk about how to get affairs in order, talk to their kids, and grandkids, say good bye to their lover, their parents. These women know their loved ones don’t know how to deal with them. They were requesting a safe place to resolve feelings that they keep hidden from others but are right there always so close to the surface and finally, a place to freely discuss the physical and financial pressures that are a reality for most cancer patients.
I agreed to co-facilitate the group with one caveat; I needed to partner with an oncology social worker. Our group was attended by mostly stage IV advanced breast cancer patients, and we were fortunate to have some other breast cancer survivor/volunteers that were willing to provide transportation and maybe stop for a quick bite to eat if time allowed. The group was small but mighty in scope as we tackled so much in our time together. We did cry together when someone lost their battle, but I have to say, mostly smiled and laughed at the absurdities of life, and the power that comes from being embraced by a supportive environment. This collaboration lasted for almost five years until I moved here to Baltimore. I believe that working with this group was one of the best things professionally I have ever done. I learned so much from this group and saw how the effects of planned coordination, access to quality oncology care in a timely way, and the effects of plain, good old listening to each other can do wonders. Metastatic breast cancer patients deserve to be heard, and I would like to applaud all the wonderful groups out there that are heeding the call and providing these patients with education and support.
So here’s sending a special shout out to the following organizations:
Advanced BC.org - dedicated solely to the needs of people living with metastatic breast cancer
Living Beyond Breast Cancer – Their mission: to connect people with trusted breast cancer information and a community of support.
Metastatic Breast Cancer Network- a national all volunteer advocacy organization dedicated to the concerns of the women and men living with metastatic breast cancer.
Metavivor - a national support, outreach and research-granting organization dedicated to metastatic breast cancer.
Find out more about Johns Hopkins retreats for metastatic cancer patients: