Lynch syndrome (LS) is a genetic cancer syndrome that causes an increase in at least 12 different cancers. Cancer of the colon and rectum (or bowel cancer) are the commonest cancers in Lynch syndrome.
People with all the genetic mutations of Lynch syndrome have a HIGH RISK of getting cancer of the colon and rectum – which is why they must have colonoscopies every 12-24 months.
The risk of getting colon or rectal cancer in people who carry a Lynch syndrome mutation is between 10% and 46% by the age of 70 years. The majority of LS carriers have the higher risk of 46%. (Moller)
A 46% risk of getting colorectal cancer by the age of 70 years old is TEN TIMES that of the general population.
People with Lynch syndrome colorectal cancer get it at a much younger age than the normal population. The average age is in the 40s compared with 70years + in non-genetic types.
Colorectal cancers in Lynch syndrome grow more quickly than ordinary types of cancers. A few extra weeks may be long enough for an “interval cancer” to grow.
That is why it is imperative that people with Lynch syndrome have their colonoscopies at the correct intervals and do not have them delayed beyond the 2-year limit.
What to do if you are having problems with getting your screening colonoscopy done on time
Assuming that you are staying with your current hospital, here are some ideas for you to try.
Nb. If you have recently had a bowel cancer operation you will be followed up by the surgeon and will then swap back to screening appointments at a later date.
Prepare well and save all your previous information. Keep all your previous colonoscopy sheets which have when you were last seen, who did your colonoscopy, what the name of your consultant is and when they wanted you to be seen next.
Phone the endoscopy unit 3-4 weeks before your time limit runs out to find out when your appointment is going to be. If it is too far ahead ask for the email address or telephone number of the endoscopy unit manager. The frontline staff probably won’t be able to change your date.
Make sure you understand where you are going to be seen and what procedure you are having. Endoscopy unit is the name of the department, endoscope means any camera looking inside the body, gastroscopy means looking into the stomach and colonoscopy is looking into the colon.
Contact your genetic counsellor and ask for them to help. They will have stipulated how frequently you were to have colonoscopies when they first saw you. If you are now on a shorter recall such as 12 months because of polyps, tell them. Genetic counsellors are normally happy to do this and will liaise with endoscopy units.
Email or phone the endoscopy unit manager if your genetic counsellor can’t help. Email is probably best because they have to answer it and can’t fob you off with excuses. Make sure you know who does what in the unit. Go to the hospital trust website – go to services, find endoscopy then you should be able to find who is who. All the email addresses will be similar. Email the endoscopy manager with a copy to your consultant.
Say that you have Lynch syndrome and are at high risk of getting bowel cancer and that you should be seen every 1-2 years (or whatever has been specified for you) for colonoscopy. Also say something like the UK guidelines for Lynch syndrome (Vasen 2013) say that even a few weeks delay can lead to cancers. Can they please ensure that you are seen as soon as possible? Or words to that effect . . .
If that doesn’t work, email directly to your consultant with a copy to the endoscopy unit. Say that you are extremely worried that you are not getting your Lynch syndrome colonoscopies on time because …….. something like - Lynch Syndrome UK have told you that every patient with LS should be getting their colonoscopies on time and certainly no later than 24 months. (UK and European guidelines by Vasen 2013 and BSG 2010).
Say that it cannot be acceptable for people like yourself to be screened at 30 months (or however long your appointment is going to be ..) if the guidelines say 24 months. (If you have had polyps previously mention that.) Whatever fits your situation.
I know it is harder to email than to ring – but you are more likely to get a sensible answer if you give them time to think and consult. And you will have it all in writing.
Also, get your GP to write to your consultant and the endoscopy manager. If the GP doesn’t know what the guidelines are – give him the links on the first page of this. His job is cancer prevention and he should be making sure the local trust is not failing you. The general practice can’t just turn you away and say it is the hospital’s responsibilty. If they won’t help ask for the telephone and email address of the CCG or Clinical Commissioning Group for your area so that you can write to them and say that you think the clinical services for colonoscopies for people with Lynch Syndrome is falling short at . . . … .. Hospital. In addition, if you think your general practice doctors are not being helpful enough with getting your colonoscopies on time, make an appointment with the practice manager and voice your disquiet.
Go to PALS. They are in your local hospital. Tell them that the hospital is failing you by not getting your colonoscopies on time. This isn’t just about bad manners – this could threaten your life.
Write to the local paper. This is a tricky one because sometimes adverse publicity might prejudice your case but if you are at your wits end, this might make a few more people locally start speaking up too.
Write to your MP. It probably won’t get your colonoscopies done on time but talking about Lynch syndrome is always worthwhile. If they don’t understand what is going on at the coalface, they won’t raise NHS budgets.
We hope after all that you have got your colonoscopy appointment through the post. Just keep persevering without getting emotionally drained. Say that on the LSUK support group, plenty of people all over the UK get theirs done on time, so it must be possible!
Written By Pauline Skarrott
Evidence for spacing of colonoscopies in Lynch syndrome
1. Vasen, HFA in “Revised guidelines for the clinical management of Lynch syndrome : recommendations by a group of European experts. GUT online February 2013
2. British Society of Gastroenterology 2010 Cairns, S.R et al in Guidelines for colorectal cancer screening and surveillance in moderate and high risk groups, GUT 2010; 59: 666-690
3. Moller P et al in “Cancer incidence and survival in Lynch syndrome patients receiving colonoscopic and gynaecological surveillance: first report from the prospective Lynch syndrome database. GUT 2015;0: 1-9