Emotional and social support

Emotional impact and speaking to your family about your diagnosis

Finding out that you have an inherited condition can be challenging. It could be an additional worry as this diagnosis not only affects you but also the rest of your immediate family. With regards to cancer predisposition syndromes, to know that one of this conditions is also life-saving information for you and your family, as it will empower you and arm you with a personalised enhanced cancer screening program that could prevent future cancers, or at least catch them and treat early so you can have a normal and fulfilling life.

If your condition is inherited in an autosomal dominant manner, your first degree relatives would have a 50% chance of having the same condition (see figure below). If your condition is inherited in a different manner, your clinician will let you know, and will give you information as to who in your family is at risk.

If your condition is inherited in an autosomal dominant manner, It is very important that you tell your parents and siblings as they have a 50% chance of having the same genetic change. They need to know as they could have the same condition too and this information can help them to take steps to prevent cancer. Your health care professional can help you think about how to have this conversation and share this information, and give you a letter to pass on to your family so they can have the genetic blood test to find out if they have the condition or not. If they have it, their extended family will also be risk.

Perhaps one of the most difficult decisions is to tell your children and how to approach the conversation as they also have a 50% chance to have the condition. Deciding how and when to have this conversation can be difficult. Genetic testing may not be recommended before the age of 18. If so your clinician will let you know. We recommend that you answer your children questions using a language that is easy for them, and share the information when you feel they are ready to learn about Lynch syndrome. Younger children might not understand what your diagnosis means to them. Children differ in the age in which they are ready to learn about the condition and their likelihood to develop cancer. In most cases, children cope better when the family is willing to discuss what is happening. This helps them feel valued and respected. Remember that not everyone living with a cancer predisposition syndrome will develop cancer, so your children might not develop cancer. Also, cancer treatments, screening and risk reducing strategies improve over time, so the options that will be available to your children when they become adults might be even better than now. Furthermore, if your children have the condition and they wish to have children, they will have additional family planning options open to them if they wish not to pass on.

Many people are preoccupied when sharing this information because they are concerned how their relative is going to react. People are concerned about causing anxiety to their family and can feel anxious, guilty or responsible about causing this upset. It is always difficult to share what is considered to be bad news. It can help to think about other times when you share bad news, or think about the benefits of having this information, such as helping your relatives to find out if they have it, and if they do, to help them to take steps to prevent cancer, as this is life-saving information.

It is important to remember that you are not responsible for having the condition. This happens by nature and it has been passed on to you from your parents, and your parents have it from their parents and so on. Also, we cannot control the genes that are passed on to our children, and you didn’t know that you have the condition when you decided to have children. You cannot take responsibility for something that you didn’t know about.

Sometimes sharing this information can be burden. You can ask other close family members to help you talking to the rest of the family, or to give your family the letters and other information that they need to get tested. Also, remember that your health care professionals might be able to help develop strategies to share the information.

You are not alone!

Living with a cancer predisposition syndrome can be a double edge sword. On one hand, it could be worrying to know that you have a higher likelihood to develop cancer. On the other hand, you are armed with knowledge and an enhanced screening programme that will help you prevent these cancer types and live a normal and fulfilling life. It will empower you to manage your care and reduce the risk of cancer, or catch it and treat early.

What is most important, you are not alone! There are many people in the UK who live with the same syndrome, just like you, and live a fulfilling life.

If you would like to meet other people living with your condition, there are associations that can help you get in touch with people just like you. They have useful resources, organise events, and online as well as face-to-face support groups where you can meet people just like you. Find below a list of associations:

For Lynch syndrome UK:  www.lynch-syndrome-uk.org
For Polyposis PolyPeople: www.polypeople.online
For the FAP gene support group: www.fapgene.com
IA gives support to anyone who has their colon removed: iasupport.org

Additional sources of emotional support

There are additional sources of emotional support. If you would like additional support we suggest that you discuss your wishes with your health care professional who will be able to help you, or choose and signpost you to the right service. Please find below some of these services and how to get in touch or self-refer to them.

One-to-one services: If you would like to access one-to-one therapy, there is a national program called NHS Talking Therapies. You can self-refer to this service. To read more about the service, click here.

Macmillan Cancer support line offers confidential support to people living with cancer and their loved ones. Telephone lines open 8.00 am to 8.00 pm. Call 0808 808 00 00. To use the email and chat online, click here.

Cruse bereavement support: www.cruse.org.uk. Helpline: 0808 808 1677

Mind peer support, please click here.

Relaxation and anxiety management

For Breathing Space, please click here, a free confidential and web based service for people experiencing low mood, depression and anxiety. Call 0800 83 85 87

For The Samaritans, please click here. Free confidential and web based service providing emotional support to anyone in emotional distress, struggling to cope, or at risk of suicide. Call 116 123

For Big White Wall please click here. Helping anxiety and depression and other common mental health issues.  Also provides social support groups.

Help with sleep hygiene app: PZIZZ, please click here to read more.

Motivation apps: to remain active, drink less, easy meals, smoke cessation and more click here.