Q. My brother was diagnosed with salivary gland cancer and it's supposedly rare. How can I find other patients or organizations that can help support him?
A cancer diagnosis can feel very isolating, particularly when the diagnosis is a rare one. Helping your brother find community and social connection through a support group is one way to help to reduce those feeling of isolation. In addition, groups can be a valuable source of emotional support, resources, and information from others going through similar experiences. While it may be difficult to find a group specific to people with salivary gland cancer, there are many excellent supportive resources available.
For example, CancerCare offers a number of face-to-face, telephone and online support groups. To learn more about our current offerings and how to register, you can contact our Hopeline at 800-813-HOPE (4673) to speak to one of our professional oncology social workers. Other organizations like the Rare Cancer Alliance offer patient forums geared towards those with rare conditions. Similarly, the Association of Cancer Online Resources (ACOR) hosts groups through an email listserv, including a Rare Cancers Online Community.
You may also want to explore peer-matching services offered by organizations like Cancer Hope Network, Imerman Angels and WhatNext. They work to match patients with one-to-one support provided by those with a similar cancer history.
Finally, disease-specific organizations (e.g., The Oral Cancer Foundation, Support for People with Oral and Head and Neck Cancer) can provide additional guidance and information. They frequently offer their own patient forums in addition to other services like education, advocacy and resource referrals.