METAvivor: Support Groups for Metastatic Breast Cancer Patients

Two women having coffee in support group. Getty Images

METAvivor Peer to Peer Support Groups are launching across the United States to bring comfort, support and companionship to women and men who are living with metastatic breast cancer (MBC),which is often referred to as Stage IV breast cancer. Their cancer has spread beyond the breast to distant organs. It is not curable. Treatments, which are ongoing, are draining physically, emotionally and financially.

Peer to peer support groups are a critical need for metastatic patients not only as a source of support, but to reduce the isolation so often experienced by those with metastatic disease.

Each group has a trained leader who also has metastatic breast cancer. Individual groups come together in local community-based settings, across the country, knowing that each member of their group understands what it means to have metastatic disease; there is relief in knowing that, in this group, there is no need to explain what you are going through; every member can identify and be supportive.

Each regional group gets together in environments that are non-medical such as coffee shops, restaurants, and other sites that are both comfortable and provide easy access to group members. Meetings may include a guest speaker, and, at times, a special event can be part of a peer support group. There is no limit on the length of time of each group meeting, with most meetings lasting about two hours.

METAvivor was founded for those living with metastatic breast cancer. The organization focuses on research. Their mission, as described in their literature, is:

  1. Increase awareness about the funding discrepancy that short-changes metastasis research in the cancer world, and to directly fund the kind of research that is currently lacking.
  1. With the primary goal of extending life and ending deaths from MBC, METAvivor awards grants for research projects that have the potential to shift MBC from a terminal disease to a chronic condition with a decent quality of life.

The Importance of Peer to Peer Support Groups

Metastatic patients often speak of the difficulties in attending breast cancer support groups that may exist in their home communities.They have very different support needs than those treated for early stage breast cancers.

Metastatic patients may not always feel welcome in groups that are primarily attended by women and men who were diagnosed with earlier stage breast cancers; they may feel that their metastatic disease is frightening to some in the group.They would be right; most of us diagnosed with an early stage cancer fear a recurrence that would result in our becoming metastatic. 

Women and men with metastatic disease may feel that they can not relate to the issues of those whose treatment is time-limited and whose prognosis is very different than their own.

They may also feel that these groups don’t meet their needs as metastatic breast cancer patients. 

There are not many support groups that focus exclusively on the issues and concerns of those living with metastatic breast cancer. These groups may have waiting lists and be time-limited. They may be conducted in a way that doesn’t allow for the free give and take of information that is so important to someone with metastatic disease. A major issue with many of these groups is that they are not led by someone who is coping with the same disease. No matter how sensitive such a leader is, she cannot fully identify or understand the feelings and situations that are part of having an incurable disease.

The newly launched, peer to peer support groups are modeled after a support group begun in 2007, in Annapolis, Maryland by "CJ" Corneliussen-James. CJ was diagnosed with breast cancer in 2004. Her cancer metastasized in 2006. When she needed and wanted to attend a support group for those with metastatic breast cancer, she couldn’t find a group that met her needs. So, she founded one.

Two years later, she and three female friends, that also had metastatic breast cancer, came together to found METAvisor, which became a nonprofit organization in 2009. CJ is the sole surviving founder. She serves as President of METAvivor; and as the Director of Advocacy.

Peer to Peer Support Group Leader Training

In 2016, METAvivor submitted a grant to Avon, which was funded in support of formalizing a training program for group leaders that would prepare them for starting and managing a group in their region of the country. The Peer to Peer Support Group Leader Training encompasses a webinar training program taught by CJ, and includes: a training guide that can be downloaded, a flyer that can be used to advertise the group, and a new member sign-up form. A closed Facebook group for peer leaders gives them a place to share ideas and challenges with each other. 

The training guide includes a message from CJ describing the reasons for and the benefits of peer to peer support groups, saying:

“As everyone with MBC knows, people who are not Stage IV patients may not understand, or even have heard of, metastasis and what it means. When we want to speak about Mets with many people, the typical response is 'Mets? What’s that?' or 'Huh?' So, when we do find other MBC patients—either through attending conferences, connections from our doctors, or in other ways—we breathe a sigh of relief that we have finally found someone who understands what we are going through, and what we are talking about. Being able to experience that feeling of understanding on a regular basis is pretty incredible—and very important. This is why MBC support groups are so necessary. Where else in your hometown, outside of an oncology center, can you find people who even know what metastasis is?

Peer support groups have unique benefits. They offer the opportunity to:

  1. Build a circle of local friends who understand MBC and who can provide invaluable advice and assistance.
  2. Go out, relax and discuss MBC issues with those who not only understand but actually enjoy addressing the subject.
  3. Turn a negative into a positive by using your diagnosis to make a difference in the lives of others with MBC.
  4. Speak about MBC treatments, side effects, and other medical issues without having to repeatedly define and explain.
  5. Lament insensitive public statements, have your MBC gallows humor appreciated, and laugh over things that would shock the man on the street while being instantly understood."

Group leaders are all volunteers, each of whom takes on the responsibility of arranging regular meetings for members, providing them with opportunities to come together in environments that are comfortable and welcoming.

Visit METAvivor if you want to join a group, review a list of current group sites and their group leaders, or apply for group leader training.


 "CJ" Corneliussen-James, President  and Director of Advocacy, METAvivor,

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