Lynch syndrome

Hi MO 65. So sorry to hear that you’ve had another curve ball thrown into the mix. You may or not test positive but I’ve attached a link to a previous post although the person that originally posted it doesn’t appear to be active on the board anymore

https://community.macmillan.org.uk/cancer_types/bowel-colon-rectum-cancer-forum/f/new-here-say-hello/223717/lynch-syndrome

Court mentions the Lynch Syndrome Society - I’m not allowed to attach the link but you can find it on google and they be able to offer you some support.I think Hayleyc89 s hubby was tested for Lynch too?

Take care

Karen x

https://www.lynch-syndrome-uk.org

Hi MO 65

Welcome to the forum and delighted to hear you are through your treatment .

I have linked in the Lynch syndrome U.K. information and thoroughly recommend you get in touch with them if you have not found them already . A lovely lady with colon cancer who used to post here worked very hard with this group and have brought the lynch  testing to the front to enable appropriate surveillance for other family members . They are a wonderful organisation who know exactly how this feels but also the best way forward to put in safeguards to ensure everyone is given the best care possible .

I am sure the lady involved did not actually know about lynch syndrome initially as it was a very long time ago and despite her own mum having it her mum’s cancer did not surface until her 70 s .

Kareno62 I have just seen your post . I am trying to link in the details . I will see if it will let me if not I will check with admin .

Take care ,

Court 

Hi. Yes my husband was told he had lynch syndrome after removal of the tumor in 2021 the tumor showed the lynch syndrome so further bloods were done and weirdly they haven't shown any mutations so the tumor and bloods still remain with leeds genetics team and they are doing more tests on them so we don't actually know what is going on we haven't heard from the for 4 months but they did say it can take a long time till they get back to us xxx

Thanks everyone for your replies. 

Hi, I have just rejoined.

We created  Lynch Syndrome UK a fair few years ago as there was no support or ready available information.

My mum was 64 at cancer diagnosis,  I was 44 and my brother 34 when he had his first bowel cancer. 

Unfortunately by the time we were diagnosed with LS my bro had fought 2 further bowel cancer and we sadly lost him in 2016, 2 days before his 47th birthday. 

Knowledge of having LS can ultimately save your life and stop other family members having to go through cancer treatment. 

Hopefully if your tests were positive you have already joined LSUK.

Regards

Helen xx

Hello HellB 

So lovely to see your name pop up again .

I hope life is being kind to you .

Court 

Hi Court,

I hope all is well with you and your family. Xxx

Yes all good here, I've got divorced and moved to Chester in the last few years

And have a granddaughter who was 7 on Saturday. 

She will need testing for LS at 18 as my daughter has it.

I have had to fight so hard to ensure my daughter gets a colonoscopy.  Her last was December 2020. Endoscopy unit told her she was NOT priority!! 

So a complaint to PALS got me no where, complaint to the NHS Trust did. I added all the guidance on timings for scopes, then a few days later she was offered 5 different appointments!

So, my advice to any other Lynchies, don't let them tell you you are not priority! 

My cancer was found 2 years 10 months after a clear scope, resulting in a total colectomy and chemo. If I'd have had a scope earlier I may not have needed chemo.

Big hugs

Hell xxx

You sound a very busy person HellB . I can’t believe the fight you have had getting access to the right investigations for your daughter . Kind of hope we were further head than this . 
So frustrating and you can only imagine that less equipped people will turn away from pursuing it .

So lovely to have a grandchild . How special .

I keep flying the flag for people with lynch  syndrome and refer them over .

We have to keep trying . I thought everyone was tested now but I get the impression it’s patchy at best .Could be wrong though .

Take special care ,

Court 

Hi Court 

Yes I think the testing of all colon and gynae cancers are slowly happening, shame its taken so many years for hospitals to finally follow NICE guidlines. And as you say we have a lot that just give up and don't push for scopes they should be offered as a matter of course.

Thanks for sending any Lynchies to our website, much appreciated. 

Hell xxx

Hi, I have mismatch cancer which I believe is associated with Lynch Syndrome I was also tested but was told it was random and not Lynch Syndrome. So I suppose it doesn’t always follow if you have dMmR that you have Lynch Syndrome. Because I had dMMR I was given Immunotherapy instead of Chemotherapy I have stage 2 colon cancer. I hope this helps a bit