When you are told you have a diagnosis of metastatic cancer, you often face many emotions, questions and fears. At a time when you may feel you need support the most, support can be harder to find. Friends and family can feel uncertain about what to say or do to help you. Support groups with people who are finishing treatment don’t always feel like a good fit. Finding resources can be challenging for people with metastatic cancer. OncoLink sat down with Stephanie Stern, MSW, LCSW-C, from the MetaCancer Foundation, an organization that provides resources and support to people with metastatic cancer and their caregivers, to talk about coping and how to find support and hope during an uncertain time.
: What advice can you give someone facing a metastatic diagnosis regarding finding support?
Answer: Research shows that support can positively affect a person’s quality of life. Through individual and/or group support, people are able to share and learn information as well as coping strategies. It can be harder to find support groups specifically for people with metastatic cancer, but the hospital social work department can be a helpful resource when you’re looking for local support services. Many social workers are familiar with support services given through the hospital and in the community. The Internet can also be a helpful place to find local and national support services. National organizations, like MetaCancer, can offer online support services to people living with metastatic cancer and their caregivers.
Support for those with metastatic cancer may be geared to people with very different types of metastatic cancer (breast, prostate, colorectal, ovarian, bladder/urinary, skin, lung, testicular, among others), even though respective treatment protocols and medical issues may seem to have little in common with each other. At first glance this may seem to not be ideal, but in reality these people, facing different metastatic cancers, have a lot more in common than they would with a person with the same type of cancer that is in an early stage. The common bonds for the metastatic community are the psychological and emotional realities faced by anyone living with metastatic cancer.
: Why is open communication so important during this time?
A: As clinicians, we know that when someone receives a diagnosis of metastatic cancer it can be harder to accept, harder to make treatment decisions, harder to find support and harder to feel hopeful. It can also be harder to talk to family and friends about how you’re emotionally and physically feeling for fear of upsetting or scaring them. Open communication with the people we love can become more difficult.
People living with metastatic cancer and their loved ones often have similar concerns and feelings. However, many of these concerns and feelings are uncomfortable to talk about because they can feel overwhelming. It’s important to know that talking about your thoughts and feelings can make you feel better.
When people openly express their thoughts, feelings and concerns they often feel a sense of relief. Also, by sharing, they can learn how others are feeling. Sharing feelings and emotions can help you to feel less alone, it can also help others better understand what you’re experiencing; what you need and want.
: Hope is a word that has a lot of meaning in the metastatic cancer community. Can you talk a little about having hope when you may feel hopeless?
A: Many people experience uncertainty and fear about the future when they are diagnosed with metastatic cancer. Hope has many meanings and means something different to each of us. As an oncology social worker, I know that hope is something inside of us and personal. While there may be times when hope is hard to access, it enhances our quality of life and is something wonderful to share.
: Please tell us about the Mosiac resource that MetaCancer has created.
A: Mosaic is a new, free online community developed by the MetaCancer Foundation, available to anyone affected by metastatic cancer to help meet those unique needs. Members can share their thoughts, feelings, hopes and concerns with others who are in a similar situation, any time of the day or night.
Mosaic is designed to be a place of calm where members can post an image, inspirational quote or message of hope. Members can log in and post a color that reflects their current mood along a timeline that can change from day to day. Simple, yet powerful.
Pages can be shared with others or kept private. Members can feel a sense of connection with this community, as well as provide a source for inspiration and hope for others. Relating to others and expressing yourself creatively can help manage stress that accompanies this diagnosis. Don’t hold it in.
: How is Mosaic different from face-to-face support?
A: MetaCancer created Mosaic as a way for people who are going through a similar situation to express their thoughts and feelings online with people who are going through a similar situation.
It’s a secure place to express your thoughts, feelings, emotions and mood from the privacy of your home, office and/or hospital room. You can post (any hour of the day or night) words, pictures, art or anything you create. Your posts can be private, just for you, or you can choose to share your posts with other patients and/or caregivers. You’re also able to see other participants’ posts and to share in their experience. Mosaic is a unique support service in that you can customize your page to reflect how you’re feeling that particular hour, day or week. There is no set-time to share, it’s up to you! Mosaic is a national/international community where you can connect with others from all over the country.
People can register for Mosaic through MetaCancer’s website.
I hope to see you there!