Support Communities Dedicated to Those With Metastatic Breast Cancer

Learn which groups focus on supporting those with metastatic breast cancer

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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.

In addition to support, a good support community may be a way to learn about the latest treatment options available 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

Many people with metastatic breast cancer find it helpful to become involved in a group made up of only people with metastatic breast cancer. The types of issues faced by women with early-stage breast cancer often differ from those with metastatic breast cancer, and being faced with these differences can be very painful.

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:

  • Metavivor is a support community designed specifically for those with metastatic disease

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 are hormone receptor negative and 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:

  • Young Survival Coalition is an organization dedicated to women who are age 40 or younger coping with breast cancer.
  • Stupid Cancer is a group of young adults (age 15 to 39) with any type of cancer, and is very active in supporting people with needs unique to young survivors.

Support for Caregivers

Caring for a loved one with metastatic breast cancer brings its own set of challenges. 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 Safety

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.

Note on Advocacy

It’s worth making a few comments about advocacy. It’s very likely that at some point in your journey you’ll be asked to become a breast cancer advocate.

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.

Sources:

DeVita, 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. Updated 01/2016. https://www.cancer.net/coping-with-cancer/managing-emotions/coping-with-metastatic-cancer

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