Table of ContentsView AllTable of ContentsSupport Group TypesMenWomenCaregiversOnline SafetyAdvocacy
Table of ContentsView All
View All
Table of Contents
Support Group Types
Men
Women
Caregivers
Online Safety
Advocacy
Becoming involved in a breast cancer support group or support community is a tremendous benefit for many people coping with metastatic breast cancer. These communities provide the chance to talk with others who are facing the same type of challenges you are. No matter how supportive and loving your family and friends, there is something special about knowing another is experiencing something similar.
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In addition to support, a good support community may be a way to learn about thelatest treatment optionsavailable for your cancer. We have reached a time and place when members of a support community may be more familiar with the clinical trials studying new treatments for your disease than some community oncologists.
Unique Groups
For example, with metastatic breast cancer you may not be concerned about preserving your fertility or revisions to your breast reconstruction surgery. Instead, you may have many concerns related to having an incurable disease that some people with early-stage breast cancer have not considered to the same degree. In fact, you may feel you have more in common with people with other types of cancer which are stage 4 than with people with early-stage breast cancer.
Thankfully, there are now breast cancer communities designed specifically for those with metastatic disease. Examples include:
Support for Men
Most communities do not have breast cancer support groups designed specifically for men, and many men may find that their neighborhood support group doesn’t really meet their needs.
The beauty of the internet is that many people can find a community focused on conditions which are fairly uncommon such as male breast cancer.
There are many differences between breast cancer in men and breast cancer in women ranging from the types of cancer, to best treatments, to the incidence of a genetic predisposition. The opportunity to talk with other men can be particularly helpful when speaking of symptoms that are unique to men.
Support for Young Women
Just as men with breast cancer have unique needs, young women with breast cancer face a number of issues unique to young women. And as with men, there are many ways in which the disease can be different.
Young women are more likely to have aggressive tumors, tumors which arehormone receptor negativeand have a worse prognosis overall.Treatments, in turn, often differ, with options such as chemotherapy playing a larger role with metastatic breast cancer than for older women with the disease.
Finding a support community with other young people can be very helpful. Some options include:
Support for Caregivers
Caring for a loved one with metastatic breast cancer brings its own set of challenges, and studies have shown that those in the caregiver role may have higher levels of anxiety and depression.Though we think of people living with cancer most often with regard to support communities, these networks are just as important for friends and family. In some ways, support can be even more important as you are unable to lean on your loved one with cancer for support.
Thankfully support groups for caregivers are becoming more common. The organization CancerCare provides information as well as support for caregivers and the unique concerns they face.
Online cancer communities can provide immense support for people living with metastatic breast cancer, but a word of caution is in order. We’ve all heard the concerns about sharing private information online, and your diagnosis is no exception. Sharing your story with others in some detail allows others to truly support you, so how can you do this safely?
Many of the online groups for metastatic breast cancer are password protected. Before signing up make sure to read about their privacy policies.
On any social media site, make sure to carefully fill in your privacy preferences before you share anything. These settings on sites such as Facebook allow only certain people to see what you have shared and not others.
Become familiar with internet privacy issues before posting anything. You want your post that you are in the hospital to be a message that you are in need of support and prayers, not that nobody is home at your house.
How to Find Others with MBC
The other difficulty can be finding others who are facing metastatic breast cancer. On Twitter, you can use the hashtag #bcsm which stands forbreast cancer social media. Searching with this hashtag can introduce you to the latest news coming out of conferences (often before studies are even published), often with images of slides. To focus on metastatic breast cancer you can try the hashtag #metastaticBC or #metastaticbreastcancer. Some people also post using the combination of #metastatic and #breastcancer. There are also tweet chats held every other week in which patients, caregivers, advocates, oncologists, surgeons, researchers, and more all communicate on the same level.
Note on Advocacy
Being an advocate is an important part of raising awareness and generating funding for research. People respond to faces and stories, not statistics, and sharing your story can be a valuable way to make a difference.
Yet, don’t feel like you need to become an advocate. Many people find that coping with the symptoms of their disease and having enough time to spend with loved ones makes it too difficult to participate in any kind of advocacy work. If this is you, please don’t feel guilty or that you aren’t “giving back.”
Instead, it is up to those of us without metastatic breast cancer to generate support. The most important role you have right now is to heal as much as possible and spend the time with loved ones you need.
5 Sources
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read oureditorial processto learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
Teleghani F, Babazadeh S, Mosavi S, Tavazohi H.The effects of peer support group on promoting quality of life in patients with breast cancer.Iran J Nurs Midwifery Res. 2012;17(2 Suppl 1):S125-S130.
Wang F, Shu X, Meszoely I, et al.Overall Mortality After Diagnosis of Breast Cancer in Men vs Women.JAMA Oncol. 2019;5(11):1589. doi:10.1001/jamaoncol.2019.2803
Cleveland Clinic.Breast Cancer in Young Women.
National Cancer Institute.Informal Caregivers in Cancer: Roles, Burden, and Support–Health Professional Version.
American Society of Clinical Oncology. Cancer.Net. Coping with Metastatic Cancer.https://www.cancer.net/coping-with-cancer/managing-emotions/coping-with-metastatic-cancerDeVita, Vincent., et al. Cancer: Principles & Practice of Oncology. Cancer of the Breast. Wolters Kluwer, 2016.
American Society of Clinical Oncology. Cancer.Net. Coping with Metastatic Cancer.https://www.cancer.net/coping-with-cancer/managing-emotions/coping-with-metastatic-cancer
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