Living with Brain Cancer: How Support Groups Matter

Are you a newly diagnosed brain cancer patient, or a family member or caretaker? Have you been living with a brain tumor and/or brain cancer for awhile, but have not met others on a similar path? If so, I would like to share from my own lived experience how support groups may be beneficial in complementing medical care. Some hospitals and brain cancer centers have dedicated support groups for brain tumor/ brain cancer patients, while others may have more general cancer support groups and services. And some have both. I am very fortunate to be a part of UCSF’s Sheri Sobrato Brain Cancer Survivorship Program, which offers a comprehensive suite of programming to support individuals and their families to live well with brain cancer. I’ve attended patient support groups, have been trained to provide peer support to others, and have participated in exercise classes for patients and survivors.  Most engagement is done via ZOOM or phone calls, meaning that you can conveniently participate from home or another space with no need to commute long distances.

Just like life, everyone comes to a support group with their own story. You will find incredible diversity among individuals with brain cancer. Participants in support groups span decades of life, genders, interests, and abilities. Some people may have more noticeable side effects from surgery or treatment. At first, it was really hard for me to witness that. In fact, I may have attended one of my meetings too early. It’s OK to participate and it’s OK not to participate. Give yourself grace if such a group does not resonate now. It may later. Feelings shift, and what may feel hard or uncomfortable today might be welcome later. You may also try one group and if it does not resonate, try another. 

Whether in person or online, support groups offer you the opportunity to build community and find others who have traveled a similar path. Sometimes, meetings are educational in nature and sometimes they are designed to share experiences. You never have to share if you do not want to. Conversely, you can pour out your feelings if that is what you feel you need on the given day. You’ll find that in these support groups, people know what it means when you mention your side effects. They can relate when you mention feelings surrounding possible or actual recurrence. You can speak in an honest and confidential space. If you’re not feeling too well, there is usually no problem with joining from your bed or sofa or keeping the camera off and just listening in.

I have gained so much from taking online support group interaction offline. I’ve met with other survivors and their families and friends at various events often tied to advocacy, support and research for our greater community. I consider several individuals with a similar brain tumor to mine as my honorary siblings, and their family members as my greater family. We look out for one another. and the bonds form quickly. 

If your hospital does not have specific support groups, there are organizations out there to help! The National Brain Tumor Society (NBTS) holds regular patient, caregiver and grief support conversations. Find out more here. The American Brain Tumor Association (ABTA) can also help you find a group if you are not sure where to start - check out their resources here.

Wherever you are, whether newly diagnosed, years into survivorship, or supporting someone you love, support groups can help to navigate the path. We are in it together.