This blog post is from our My Ovacome forum and was originally written in December 2020.

There are various types of support groups. For example, they may be for people affected by ovarian cancer, by all gynaecological cancers or by any type of cancer. Some groups are led by a healthcare professional such as a Clinical Nurse Specialist, hosted by a charity or organised by someone affected to help others to support each other. The format of the group may vary, for example a healthcare professional could be involved but not go to every meeting. Some meetings might focus on a particular theme or have an expert speaker to talk about a relevant topic and others might be a more general discussion among the members.

Groups can be a valuable source of support, particularly for people affected by a less common cancer such as ovarian, who may not otherwise meet anyone with the same diagnosis. Talking about what is happening for you with other people who understand from their own experience can help you to feel less isolated. Some support group members also stay in touch with each other outside the group, for example meeting for coffee or texting to offer mutual support and friendship.

The idea of going to a group for the first time can be daunting. If you’re feeling nervous, you can get in touch with the organiser in advance to find out more about the group and ask any questions. For example, you can ask about the format of the sessions, directions to the venue, how many members usually attend, whether there is a planned topic or speaker for the meeting and whether you’ll be asked to say something. At our Ovacome groups, we usually start by inviting the attendees to introduce themselves and say something about their diagnosis and treatment, but this is completely optional.

Support groups are not there to pressurise anyone and you can speak as much or as little as you want to. Especially when you’re new to the group, you may find that it’s helpful just to hear other people talking about their experiences. When you feel more comfortable, you can start to join in the discussion more if you want to.

If you’re attending a group for the first time and don’t think you’ll want to say anything, you can let the organiser know in advance. If the meeting is virtual, you can also keep your video turned off if you feel more comfortable that way. Again, you can let the organiser know that you’re going to do this, so they understand that you prefer not to be visible. It may also be possible for you to arrange to arrive before the meeting starts to meet the organiser, talk through anything that you’re feeling unsure about and get settled in before the other group members arrive.

If you’re interested in joining a support group, there are a few different ways of finding out what’s available in your area. Ovacome has a list of local groups on our website. If you know of a group that isn’t listed, or if any of the information on our list has changed, please let us know so that we can keep the list as up to date as possible. You can also always contact us to search for local groups for you and we are happy to help with this.

You can search online or ask anyone you know who might be able to help. Your Clinical Nurse Specialist or another member of your team may be able to tell you about local groups.

There are some situations in which a support group might not be the most appropriate form of support for you. In a group setting, everyone has an opportunity to talk about what’s on their mind and receive support from the other members. If you feel that you need to talk at more length or in greater depth about your experiences and feelings, you may benefit more from one to one counselling or contacting a helpline. If you’re seeing a counsellor or using a helpline, you can also attend a support group.

Something to bear in mind when attending a group is that one of the members may say something or raise a subject that you find extremely upsetting or difficult to cope with. Anyone attending a support group meeting can discuss their experiences, and you don’t know when you arrive what the other members are going to talk about. Support groups are a safe space and if you become upset you will not be expected to leave. The group will support you. However, if you prefer not to be upset in front of others, you don’t have to stay and listen to the conversation if you’re finding it distressing. You can leave the room to take a short break, or you can leave the meeting altogether. If the meeting is virtual, you can click ‘Leave’ or, if you’re taking a break, temporarily mute yourself, turn off your video and mute the sound on your device. If you want to, you can also type a chat message to the group to let them know that you’re leaving or taking a break. Depending on the group’s practice, the organiser may contact you after the meeting to ask how you are and if you need any further support.

If you think that you may be upset if certain subjects are discussed in the group, you can consider whether going to the meeting is the right choice for you at that moment. If you do decide to go to the meeting, you can let the organiser know that you might need to leave early or take a break.

You can attend a support group for as long as you find it helpful. For many people, a group is part of their support experience and after a while they feel ready to leave the group or to attend less often. If you think that going to the meetings is no longer helping you, or is keeping your focus on your diagnosis more than you feel is right for you, you can try missing one meeting and seeing how you feel. You can always go back whenever you feel that you would benefit from attending a meeting.

If you’re thinking of starting a group, or if you’re running a group and would like more information, Ovacome has produced a handbook for support groups, which includes helpful tips on setting up and running a group. You can find the handbook here. 

If you would like to share your experiences of support groups or have any tips for someone thinking of going to a group for the first time, please comment on this post. If you would like information or support, including about how we can help support groups, please contact our Support Line on 0800 008 7054 or email [email protected].