If you are living with metastatic breast cancer, it’s possible that at some point you will feel alone or isolated. Family members who you thought you could count on may not be able to deal with the seriousness of the situation. Friends who you thought would always be by your side may vanish. Breast cancer survivors you met through a support group who are doing well may find your recurrence scary. Luckily there are many women living with breast cancer recurrences and metastatic disease who want to be part of your support system. Here are some of the places you can find them online:
You will find that the women living with metastatic breast cancer who visit these listservs and message boards have a wealth of information to share on the latest treatments, side effects, and clinical trials as well as what day-to-day life is like with metastatic breast cancer. They know what it’s like to be waiting for results from your most recent blood tests or scans. They know what it’s like to develop pain or an ache in a new area of your body and to wonder if this is a new site of metastases. They know what it’s like to find out you need to change treatments. And they know what it’s like to feel that no one else understands what you are going through
You may decide that you want to join others in advocating for more research on metastatic breast cancer. Here are some places you can find information and connect with other advocates who are pushing metastatic research forward:
- METAvivor.org
- MBCN.org (Metastatic Breast Cancer Network)
- MBCAlliance.org (Metastatic Breast Cancer Alliance)
- NBCC.org (National Breast Cancer Coalition)
A diagnosis of recurrence or metastasis will remind you that you do not have control over your body. But you certainly do have control over your mind, emotions, and spirit. If it’s right for you, think about learning meditation or listening to a visualization, like these provided by the University of Michigan Comprehensive Cancer Center.
It’s important that you have a doctor you can talk to and who will listen to you. Shop around if you have to. If you are in a small town and/or have an insurance plan with limited choices, then schedule an appointment with your oncologist so that you can talk about what you need, as well as what she or he expects from you. You need to know as accurately as possible what to expect from your condition and your treatments so that you can be prepared. Ask for the information you need and tell your doctor if there are things you would rather not know. As in any relationship, frank communication about your needs will go far toward having them met.
In addition to seeing an oncologist, you will probably want to see a palliative care specialist. Their expertise is in easing symptoms. Oncologists often get so tied up in treating the cancer they don’t pay attention to its potentially life-disrupting side effects. Palliative care specialists are not for the end of life, which is hospice care. They may have a lot of good ideas on how you can deal with your symptoms and the collateral damage of treatment, sometimes continuously over a long period of time. If your doctor doesn’t suggest it, bring it up.
Learn more about living with metastatic breast cancer in Recurrence.