Lynch Syndrome

I was tested for Lynch and that came back negative. I was also tested for the BRCA gene and that came back negative too. I can’t say I wasn’t worried while I was waiting for the results - Lynch came back first but BRCA took longer. It was an incredible relief to get my negative results, thought I’d also decided that if the BRCA came back positive I wouldn’t have a mastectomy but would opt for regular MRIs.

Thanks for getting back to me. Understandably worrying whilst you're waiting for yet more results but so glad you had negative results on both counts.

Hi SH53,

I was also tested for Lynch syndrome, which was negative. I think it is more likely if you have a lot of cancer in your family, especially bowel cancer. I had to ask about it at my follow up as they didn't mention it. Best wishes for your results.

A x

I was given a positive Lynch Syndrome result. Positive for MSH6 gene. I was tested due to both my mother and Grandmother having endometrial cancer at the same age/time of life as myself, plus various other cancer history in the family. 

This does mean that regular monitoring/ testing is offered to watch for other cancers as you may be at more risk.

I was going to be getting a colonoscopy, but due to my current condition and treatment, was advised by my consultant to put it on the back burner for now. 

Don't over think it. Just concentrate on what you are going through now. You may get a negative result like some of the other folk on here. I hope all goes well for you. X

Thanks. No female cancers in my mother's family, most lived into their 80s & 90s! My father had eye melanoma in his 80s which was a bit unusual. Not aware of any bowel cancers.

Thanks for your advice. Just a case of taking every day as it comes!

It is, I think everyone will agree with that. 

Keep us posted. I really hope everything goes well for you. 

Take care and keep positive! 

X

Hi

I had to ask my consultant about what I'd been tested for as they didn't offer this information and it turns out I was tested for Lynch Syndrome which was negative.  They didn't do the BRCA test's as it wasn't connected to womb cancer, but as there is a history of breast and ovarian cancer on my Mum's side I wish they had tested for it.  I'm now mulling over whether I should get myself tested privately just for reassurance.

Hi Shelley, also diagnosed with Lynch following shock endometrial cancer diagnosis this time last year. So rare to find anyone in same Lynch boat son thought I'd reach out! xx

Hello cbwc

Good to know I'm not on my own, but sorry at the same time for your sake!

I try not to think too much about it, put it to the back of my mind, but I am concerned for my 3 boys. 

How are you getting on with your treatment etc? Hope you are coping ok.

Shellie