Last year I wrote a blog about ILSAD that covered many aspects about the genetic syndrome, if you like, you can recap here
This year I asked people via instagram, what their questions were and chose the most popular ones…
What is Lynch Syndrome?
It’s a type of inherited cancer syndrome associated with a genetic predisposition to different cancer types. ie if you have Lynch syndrome you have a higher risk of getting particular cancers.
How do you get it?
It is (usually) hereditary.
Very rarely, someone throws a spanner in the works (like me…) and is De-Novo. Not family links at all.
Is it just bowel cancer you are at risk of?
Sadly no. Lynch syndrome also increases the risk of developing endometrial (uterine), ovarian, stomach, breast, small bowel (i hope not!), pancreatic, liver, kidney and prostrate and urinary tract cancers.
How did you know you had it?
When I was diagnosed with bowel cancer at 29yo this was pretty uncommon, so my consultant flagged my case up (as I had had it from, what they guestimate to be, the age of 24) and Guys Hospital’s Genetics Dept started testing my tumour. It took them years, but then they found the Lynch
Is it only people with bowel cancer who have it?
No, many people have it but they do not know. Normally it is the hereditary aspect that is a bit of a flag for the medical teams (thankfully for me my age was the flag, as mine would never have been picked up based on family history).
Can you get tested for Lynch Syndrome?
ANYONE with a bowel/rectal cancer diagnosis should be tested for Lynch. The National Institute for Health and Care Excellence (you may know of them as NICE) recommended last year that everyone in England who is diagnosed with bowel cancer should be tested for Lynch syndrome. If you have not been offered it, ask for it.
Can you get rid of it?
No. We are not in a Marvel movie, we cannot change our genetic make up (yet)
Is it because it is hereditary you have not got a child?
This was a bit blunt, this question. However, it is a good one. This will be answered in a whole other blog post to come (that will be shared with Never Too Young, Bowel Cancer UK). In short, probably.
How would I know if I had it?
You would have to be tested. If you have family history of lots of cancers and develop cancer yourself you really should ask your GP for a genetic referral.
There is something called the Bethesda guidelines that GP’s may use to know when to refer:
- Bowel or endometrial cancer under 50yo
- Bowel cancer, endometrial cancer, or other cancers with mismatch repair deficiency (MMR-D) or high-level microsatellite instability (MSI-H) found on testing of the tumour specimen
- Bowel and other Lynch linked cancers separately / the same time
- Bowel cancer in 1 or more first-degree relatives (folks, siblings, kids) who also has or has had another Lynch syndrome-related cancer. Particularly if 1 of these cancers was developing under 50yo.
- Bowel cancer in 2 or more first- or second-degree relatives (aunts, uncles, grandparents, grandchildren, nephews, and nieces)
How can I stop getting it?
You can’t. Sorry
If I have it, does it mean I will get cancer?
No, odds are not favourable but it by no means it is a certaintity. Alot of people with Lynch have preventative surgeries to remove the cancer risks – education, surveillance and knowledge are all key in a healthy life and survival rates.
Up Yer Bum : bowel cancer awareness & charity events 