Q. Is there a support group for newly diagnosed people? I'm 55 and just diagnosed with soft tissue sarcoma on my right leg, below the knee. So many questions! How long can I keep working; how do I tell my friends and relatives; how do I tell my workmates and supervisors; how will I cope with all the medical bills?
Being newly diagnosed is a chaotic time as you’re taking in a lot of information and figuring out the details of your diagnosis and treatment plan. Joining a support group or reaching out to a peer matching program might be a good way to learn from other patients. At this time, CancerCare does not have a group for newly diagnosed patients or for sarcoma. Our support groups are offered based on demand and we have not had enough members to create these groups to be active and helpful to participants. But, I can make some suggestions to help you get connected to support and information.
First, the following organizations focus on sarcoma education, resources and support:
- Sarcoma Alliance (view their support group resources)
- Sarcoma Foundation of America (lists this as an online group option: inspire.com/groups/sarcomaconnect)
- Sarcoma Coalition
You can also try www.smartpatients.com, which offers many different groups for patients and caregivers affected by specific illnesses including sarcoma.
Peer matching is another great option to connect with another patient with a similar diagnosis. Someone who has been through this will be able to give you suggestions, answer questions and tell you what helped them during their diagnosis. I would suggest:
I also wanted to share some helpful information from our programs. CancerCare has couple of publications and workshops that cover the questions you mentioned:
Specific to sarcoma:
Managing Costs of Cancer:
You may also want to look at www.cancerandcareers.org, which can provide you with helpful suggestions about navigating the workplace and employee rights during a cancer diagnosis.
I hope these suggestions are helpful and would encourage you to reach out to CancerCare’s Hopeline at 800-813-4673. All the calls are answered by oncology social workers who can connect you with support and resources. Our hours are Mondays to Thursdays 10 a.m. - 6 p.m. EST and Fridays 10 a.m. - 5 p.m. EST.