There’s a ton of information and support for people with breast cancer. But as a person living with metastatic breast cancer, your needs may be somewhat different from those who have earlier stage breast cancer.
Your best resource for medical information is your oncology team. They can provide you with educational materials specific to advanced breast cancer. Chances are you’ll probably want information about a variety of other aspects of life with metastatic breast cancer, too.
Several organizations provide helpful materials specifically for people with advanced breast cancer. Here are some good places to start:
Living with advanced breast cancer, you no doubt have a lot on your mind. With all the treatment decisions, physical changes, and side effects, it wouldn’t be at all unusual if you felt overwhelmed at times.
Whatever emotions you’re feeling, they’re not wrong. You don’t have to live up to anyone else’s expectations about how you should feel or what you should do. But you might want someone to talk to.
You may or may not have a spouse, family, or friends who can provide emotional and social support. Even if you do, you could still benefit from connecting with others who are also living with metastatic cancer. This is a group of people who will “get it.”
Whether it’s online or in person, support groups offer a unique opportunity to share common experiences. You can get and give support at the same time. Members of support groups often form strong bonds of friendship.
You can find support groups in your area through your oncologist’s office, a local hospital, or house of worship.
You can also check out these online forums:
- BreastCancer.org Forum: Stage IV and Metastatic Breast Cancer ONLY
- CancerCare Metastatic Breast Cancer Patient Support Group
- Closed Metastatic (Advanced) Breast Cancer Support Group (on Facebook)
- Inspire.com Advanced Breast Cancer Community
- TNBC (triple-negative breast cancer) Metastasis/Recurrence Discussion Board
Oncology social workers are only a phone call away. They’re available to help you cope with the emotional and practical challenges of breast cancer.
Many questions arise when you’re living with advanced breast cancer. Who will help when you can’t drive yourself to treatment? Where can you buy medical products? How will you find the home care help you need?
Your oncology office gets these questions all the time. They can probably provide a list of services and providers in your area. Here are a few more good resources to try:
- American Cancer Society Services provides information on a variety of services and products, including:
- financial resources
- hair loss, mastectomy products, and other medical products
- local patient navigators
- lodging while getting treatment
- rides to treatment
- coping with appearance-related side effects
- online communities
- CancerCare Financial Assistance gives help with:
- treatment-related costs such as transportation, home care, and child care
- insurance copayment assistance to cover the cost of chemotherapy and targeted treatments
- Cleaning for a Reason offers free housecleaning services for women in treatment for breast cancer, available throughout the United States and Canada
If you find you need in-home care or hospice care, here are a couple of searchable databases to help you locate these services:
- National Association for Home Care National Agency Location Service
- National Hospice and Palliative Care Organization — Find a Hospice
Your doctor’s office can also refer you to services in your area. It’s a good idea to research this before the need arises, so you’re prepared.
Clinical trials are an important part of cancer research. They give you an opportunity to try new treatments that aren’t otherwise available to you. These trials often have strict criteria for inclusion.
If you’re interested in taking part in a clinical trial, start by speaking with your doctor. They may be able to find a trial that fits your situation. You can also check out these searchable databases:
Primary caregivers can also get a bit overwhelmed. In the process of taking care of a loved one, they often neglect their own well-being. Encourage them to ask for help.
Here are a few ways to help lighten the load:
- Caregiver Action Network: information and tools to get organized
- Caring.com — Being a Caregiver Support Group: tips and advice on taking care of the caregiver
- Family Caregiver Alliance: information, tips, and caregiver support
- Lotsa Helping Hands: tools to “Create a Care Community” to organize help with caregiving duties such as meal prep
Besides their caregiving duties, these people may also take on the responsibility of keeping everyone else in the loop. But there are only so many hours in a day.
That’s where organizations like CaringBridge and CarePages come in. They allow you to quickly create your own personal web page. Then you can easily update friends and family without having to repeat yourself or make dozens of phone calls. You can control who has access to your updates, and members can add comments of their own that you can read at your leisure.
These sites also have tools to create a help schedule. Volunteers can sign up to perform particular tasks on a certain day and time so you can plan on taking a break.
It’s easy to get lost in caregiving. But caregivers do a better job when they also take care of themselves.