Breast Cancer Support Groups InPerson Online For Caregivers
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.
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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 perfecting 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.
* The Metastatic Breast Cancer Network (MBCN) offers information on how to live with metastatic breast cancer, has a clinical trial finder, and much more.
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 an online 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 (ages 15 to 39) with any type of cancer. It 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, 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 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, but you should ensure that you’re careful.
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 for breast cancer social media. Searching with this hashtag can introduce you to the latest news coming out of conferences (often before studies are even published), and many posts include 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.
Additionally, there are tweet chats held every other week in which patients, caregivers, advocates, oncologists, surgeons, researchers, and more all communicate on the same level.
A Note on Advocacy
It’s very likely that at some point in your journey you’ll be asked to become a breast cancer advocate. Here are a few thoughts for your consideration.
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 you need with loved ones.
A Word From Verywell
Being diagnosed with metastatic breast cancer comes with unique struggles you may not be able to handle alone. Try seeking support centers to help you know how to care for yourself or someone who you know is a breast cancer patient. Remember that you are not alone and that people are there for you.
Frequently Asked Questions
Are there online breast cancer support groups?
Yes, breast cancer support groups allow you to connect with people with breast cancer virtually. Cancer Survivors Network and Reach for Recovery are two options for finding an online community of breast cancer. You can also find support groups by searching on Google or social media.
What can you do to support a woman with breast cancer?
You can offer practical support like cleaning the house or getting the kids from school. You can also provide emotional support by listening to her express her feelings and attending treatment sessions with her. It will also be helpful to visit her doctor with her and be the one to ask questions and take notes during the appointment.
What happens in breast cancer support groups?
Most times, a breast cancer support group has a group leader who is often a professional like a psychologist, pastor, or oncology social worker. Other times, groups are moderated by breast cancer survivors.
Once you find a support group to join, you may want to study how the group works. Some people find it easier sharing their experience than others. It is totally acceptable if you choose to listen more than talk.