How to Locate Breast Cancer Support Groups
If you have been recently diagnosed with breast cancer, your physician may have advised that you join a breast cancer support group to help you reduce the stress and anxiety associated with diagnosis. Being diagnosed with cancer is a life-changing event that is often followed by psychological and physical effects that can be debilitating (such as depression, anxiety, and hopelessness). The trauma of diagnosis can cause a person to experience intense emotions that are not easily shared with their loved ones. These emotions can be overwhelming to bear alone. Sometimes the best way to deal with the trauma and intense emotions is to simply tell someone else, especially someone who has also lived through the same tough experience. Support groups for breast cancer offer a place for you to express and process emotions while gaining knowledge from cancer specialists and/or people who have finished treatment and are in recovery. If you are looking for a cancer support group and are struggling with choosing the right one, this article will help inform you on how to locate a breast cancer support group that fits your needs.
Overview: Breast Cancer Communities
Breast cancer patients can find a safe place to express everything they need in a cancer support community. It may seem difficult to freely express your deepest emotions about living with cancer, especially in front of people you have just met. You may already be feeling vulnerable and may not want to open up or work through such intense emotions. This is completely valid. However, if you are feeling lonely or overwhelmed you may also find comfort and relief in talking about what you are going through with others who have had a similar life experience.
A support group is usually made up of people with a similar life situation who share concerns and related stories in scheduled meetings that take place online or in person. Some online support groups are formatted in chat rooms where people share posts as opposed to a scheduled meeting. These support communities should provide an environment where members offer each other support, positive reinforcement, and a place of comfort to openly share thoughts and concerns.
Support groups typically offer two types of memberships, open or closed.
Open memberships. An open membership allows the members to come and go as they please without a commitment to a long term involvement in the group. People who have a schedule that changes or who are going through treatment benefit from this type of membership.
Closed memberships. A closed membership usually requires registration and you are asked to participate in a set number of sessions. These groups may close after the specific number set for the group is met. For instance, if the number is set at eight people per session then the group will be closed to new members. People who enjoy making long-term connections to a small group of people and appreciate the consistency of a planned session will benefit from this type of membership.
There is a special bond that is created between people whose lives have been changed by cancer who talk about the experience in a community. The benefits of breast cancer support groups include:
- Accessing new information about treatment specific to the type of breast cancer you have
- Building a close connection with others thus relieving feelings of isolation
- Sharing knowledge with others living through a similar experience
Many breast cancer communities are led by professionals who specialize in the field (i.e., pastors, psychologists, oncology social workers, or oncology nurses). Others are run by survivors. In the support groups moderated by a trained professional, you will find the professional is prepared to provide resources for living with cancer and can help people who are dealing with intense emotions for the sake of group members. These professionals may or may not be breast cancer survivors. You may prefer a group that is organized by breast cancer survivors who bring their own personal experience with cancer into the guidance of the group. This connection may be more desirable to those who need a group mediator who can deeply relate with their experience with breast cancer.
How to Find In-Person Cancer Support Communities
In-person support groups are often available through a clinic, hospital, or your physician. There are also several non-profit organizations that offer support groups for people living with breast cancer. The government is another place where you can find resources that direct you to a support group. For example, the National Institutes of Health, or NIH, hosts websites specific to diseases or conditions that provide links to resources that offer support.
Non-profit organizations often provide numerous resources for people living with breast cancer. Some non-profit organizations that can help you locate in-person or virtual cancer support groups include:
- You Can Thrive! Foundation
- Support Connection Inc.
- Cancer Lifeline
- National Breast Cancer Foundation
- SHARE Cancer Support Inc.
- Shanti Foundation (Margot Murphy Women’s Cancer Program)
You may find that you have several different options to choose from for a face-to-face or virtual group. Because of the COVID-19 pandemic, many support groups have moved online. These meetings are very similar to what you would experience during a face-to-face meeting. Typically, these groups will require you to participate with your video and audio. While deciding which support group is best for you, consider asking the following questions:
- Is this an open or closed membership?
- Is the group led by a trained professional or a breast cancer survivor?
- Are there fees to join the group?
- Is there a trained moderator who guides the meetings?
- What is the meeting like?
- Are there set guidelines for confidentiality?
- Where does the meeting take place?
- How long are the meetings?
- Is the group-specific to people with breast cancer?
Asking these questions before you attend the meeting will help orient you to where the meeting takes place, among other important details like if the meetings are free or requires payment. If there is a long commute or the meetings seem to take too long, you may decide that an in-person meeting may not be the best fit for you. In deciding that you are unable to attend an in-person support group, know that there are several other options for you via telephone, video meetings, or online.
How to Find Online Breast Cancer Support Communities
Some people prefer the anonymity that the internet provides and the freedom to find support systems that do not require a commitment to regular group meetings. This is where an online breast cancer support community comes in. There are several options available to you on the internet. You may find that you are more comfortable in a group that is working through a similar life situation like post-mastectomy or just began chemotherapy. There are breast cancer support communities that are designed specifically for people who have metastatic breast cancer, or who are living with stage 4 cancer. Other groups may be formed to help support caregivers, family members, or loved ones. Several support groups are available for the different types of people who are touched by cancer, including groups organized according to:
- Stage – From diagnosis, treatment, after-care
- Family members and/or loved ones
You may want to join an online group that shares your ethnicity or gender. There is a great health divide in the diagnosis and treatment of young black women versus their white counterparts. Twice as many women under the age of 35 are diagnosed with breast cancer as opposed to white women. Black women are 40% more likely to die from breast cancer and are more likely to experience disparities in healthcare and lack of adequate medical resources. In these cases, choosing a support group that embraces and honors the disparity in healthcare and offers solutions to the divide may be the best online support community for you to choose. Males, transgender, or binary gendered persons may also be diagnosed with breast cancer. There are support groups available for all gendered and non-gendered persons. What is important for you when choosing your community is that you feel open, comfortable, and safe.
Lastly, the American Cancer Society is an excellent resource for people living with cancer. They offer one-on-one support through a program called Reach to Recovery. This program pairs people who are newly diagnosed with volunteers who are breast cancer survivors. There is also an online support network with chat rooms and discussion boards where you can talk to cancer survivors. Just remember to check any medical information discussed on these boards or chat rooms with your physician.
Mayo Clinic Staff. (2021, August 29). Support groups: Make connections, get help. Retrieved from Mayo Clinic
National Breast Cancer Foundation. (2021). Where can I find a breast cancer support group? Retrieved from National Breast Cancer Foundation
Parch, L. (2016, February 29). How to find an online breast cancer support group. Retrieved from Health
Shim, M., Cappella, J. N., & Jeong Yeob Han. (2011, June). How does insightful and emotional disclosure bring potential health benefits?: Study based on online support groups for women with breast cancer. Journal of Communication, 61(3), 432-464. Retrieved from NIH Public Access
***On the Aepios platform, members gain support from peers nationwide by sharing valuable real-world experiences, treatments, and outcomes for an expanding number of medical conditions.***