Help please with lynch diagnosis - Lynch Syndrome UK

Lynch Syndrome UK

Help please with lynch diagnosis

Amyjane88 profile image
5 Replies

Hi all new here I'm almost 30. I'm looking for advice to see if I should be tested for lynch. My wonderful mother past away from cancer when she was 50. She was diagnosed 6 months before she passed away. They think she must have had cancer for a couple of years before. She had bowl cancer that had a feminine hormones it spred every where. My father has had lots of colon polyps removed.

Would I be a candidate for testing?

And if it was to be positive what happens next.

I had a uterine polyp last year removed and that was cancer free . But I had another one less than a year later and have surgery for that next week.

Many thanks xx

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Amyjane88
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Hrant profile image
Hrant

Hi Amyjane88

Run for a genetic test , do not wait . check on your uncles and ants and grandparents to know their past health history before you meet the geneticist because they are going to ask you a lot of questions about your family . I do not know where you live but if you are near a major cancer centre go there . make sure during your surgery they check ( if your polyps are MSI-H that is microsatellite instability -high ) . if you are positive for Lynch , make sure what gene is messed up ( there are 5 possibilities ) , then get your brothers and sisters to test also .

there is nothing to fear knowing early means you are ahead of the disease . I do not overwhelm you . once you know the bad gene then if you chose to contact me I will walk you through it . the bad gene in me is called MSH6 and am 60 year old male and did not get any cancer yet but I test every year . You can be on top of this if you have it , just don't ignore the testing .

Take care , Hrant

Hrant profile image
Hrant

One more thing , get a physical copy of your biopsy report . good luck . Hrant

Amyjane88 profile image
Amyjane88 in reply to Hrant

Hi

First of all thank you so much foriding your reply. I lives between sailsbury and new forset. I have one brother but of causes will share information with him.

As far as family goes . My moms parents are still around and they have never had cancer . My dad's mom passed away at 52 from brain cancer . One of my auntie had breast cancer. Unfortunately have not spoken to this side of the family for 20 years.

I will ask about the msi-h test on poylp. I'm having this done on Thursday.

Bit silly thing to ask but do I go to my g.p to get things started ? Or is there some where I need to go ?

I would just like to know I am not worried about having it. It worries me more that I have it and testing is not being done.

Many thanks for all your help

Hrant profile image
Hrant

Amyjane88

I have a feeling you live in England , I am in Los Angeles and I do not know much about the rules outside of the U.S. .

You are thinking the right way you need to go to a genetic counsellor whether you do it directly or need a referral from your GP I do not know but the bottom line you need to go there , or maybe your GP is able to order the test , it is a simple blood test , remember if you are told you have it make sure you know which gene is the problem .then you get your brother to test first ( we can talk about the rest of the family later )

I have been reading that testing and following up is kind of a new trend over in England , so you have to be on top of this PERSONALLY . ( we will get to that later if you have it )

Once they take the polyps out on Thursday , make sure you have the biopsy report and look if they discovered any dysplasia in the cells ( that state is 2 steps before cancer) . and if if if it is a cancer make sure the find if it is genetically an MSS ( microsatellite stable ) or MSI ( microsatellite instable ) . All lynch patients have MSI -H ( high)

Maybe you want to talk to your GP about the recurrence of the polyps in the same area and his opinion on your risk of bigger problems and see what he suggest .

Keep me posted , good luck on Thursday . Hrant

Amyjane88 profile image
Amyjane88

Hey

Yes I'm in the uk. Thank you so much for your wonderful advice and the time you have taken. I will make sure I ask for the things you have told me .

I will keep you posted

Many thanks amy

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