Lynch Syndrome

Hi KW89

Thanks for getting in touch.

My name is Paula and I am one of the Cancer Information Nurse Specialists on the Macmillan Support Line.

I am sorry to hear about your husbands battle with bowel cancer and can imagine how difficult it must be for you. It’s never easy when a loved one gets a cancer diagnosis and declines to talk through their fears and anxieties. Sometimes they don’t realise the impact it has also on all the family facing those difficult questions and answers.

I am really pleased you reached out to us for support. I hope it helps with the concerns you have. Google is good for some information, but it can cause further unnecessary worries when you’re trying to make sense of what’s happening.

On the whole most cancers are not genetically linked and may be caused by other factors. However, with some cancers there is a genetic link which can be inherited such as Lynch syndrome. It’s considered one of the most common inherited cancer syndromes that can run in families. It can increase the risk of getting bowel cancer and other cancer types from an early age. However occasionally it can occur with no family history of cancer.

Testing for lynch syndrome can be confirmed through blood or saliva test and usually involves three-stages. Not until the third test result comes back will you know for certain if your husband has lynch syndrome. It may be worth trying to talk to your husband about his test.

If the third test confirms this family members may be eligible for testing for the syndrome. However, it is recommended talking to a health professional who has training in genetic diseases and conditions, especially for people who have a family history of lynch syndrome, before going ahead with any testing.

You may find this guide on Lynch syndrome helpful to look at or this NHS patient information booklet. Both have useful information that may help your understanding of the syndrome.

Coping with future uncertainties can be difficult. Recognising those feelings is a normal process and many people share your fears and worries. You may find this guide on Lynch syndrome helpful to look at or this NHS patient information booklet. Both have useful information that may help your understanding of the syndrome.

We also have online forums which some people find it helpful to share their experiences with others. Bowel Cancer UK also offer support and advocates for Lynch Syndrome testing

You might find it helpful to talk one of nurses on the support line. Sometimes giving us a call can help. It’s a free phone number on 0808 808 0000 and we are here 7 days a week, 8am-8pm or email us. 

I hope this information has been helpful, please don’t hesitate to get back in touch.

Regards

Ref: PW/JD