Genetics etc

FormerMember
FormerMember
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My hubby John was the youngest of 6 kids. His 2 sisters both died of abdominal located cancers. One was stomach, not quite sure if the other was stomach or bowel. John got bowel cancer diag, in 2015. It was already 50% of bowel. He was 61. Towards end it was suspected that although very rare, the cancer had gone to his brain. He moved during a brain scan so it wasn't confirmed. The symptoms were rather like dementia with a twist. Looking back the changes were there but too subtle for me to notice as early as 2016. I didn't see these till after he died in 2019. He left a video remembering people he cared about. In it he mentioned neighbours who he barely knew, yet the previous family whose kids were like our own were left out. He was also losing time perspective where hours felt like minutes, and the once spectacular almost photographic memory began to be affected. 

His older brother Joe also got bowel cancer at a similar stage about 18 mth after John's diagnosis. They both had the same op. John had chemo but Joe refused it but all seemed okay and no sign of cancer in his bowel...but with John the cancer never returned to his bowel it came on his abdomen wall...so now I wonder if Joes cancer is back and gone to his brain too. His wife is very worried but Joe refuses to go to the doctor. There is def something wrong but no idea if dementia or cancer.... but there is also the genetic worry. No one has had the bottle to follow up if there is a test that can be done for genetic cancer...is bowel cancer even one of them? Just seems odd that 4 out of 6 kids had abdo located cancers and 3 died....any advice please?

  • Hi ,

    Welcome to the forum. I am so sorry to hear what your husband and siblings have gone through . It is a very difficult disease for some .

    My own mum was 67 at diagnosis and nothing to indicate genetic abnormalities. However there is some bowel cancers that have a genetic link and for the next generation it is worth while investigating as they can start screening sooner if applicable . I am not sure if this is right but when my mum was diagnosed we were told anyone under a certain age should have immediate family siblings tested and their offspring should start testing ten years earlier than their relatives were diagnosed.

    There is also a syndrome called Lynch syndrome that is genetic and bowel cancer is one of the primaries along with others that it affects . There is a very real possibility that your husband’s tumour sample will still be there and suitable for testing . I don’t know much about this side of things but I can only urge you to look into it . There is a group for lynch syndrome in the UK and is actually ran by someone who used to post on here . If you contact them they will have a lot more information on genetics and how to approach testing . It’s a long process . Or you could phone our helpline 0808 808 0000. I think it’s worthy of looking into .

    Can I ask if your husband used to post on here ?

    There was a man called John with a brain met who was a very valued contributor a few years ago . Just wondered if it was the same man .

    Sending you much love .

    Court 

    Helpline Number 0808 808 0000

  • Hi there, 

    I'm so sorry about your husband. My husband is also John, he's 35 and recently diagnosed with bowel cancer and as he's so young, we spoke to a geneticist. She advised John to do a test to see if there are any hereditary causes or strange mutations picked up. 

    I'd advise Joe's wife to speak to her GP for a referral to a geneticist. They can either take a blood sample or a spit sample. 

    Lornaliz x

  • When I was being treated, I was given full genetic screening to see whether or not I had some sort of genetic tendency to develop bowel cancer, so my brothers could be aware of it, and also be screened. Fortunately, we did not have those genetic markers. However, this proves that the service for this does exist. If you are want to know if those markers are in the family, then you can try to ask GP or any hospital doctors that are involved to have those tests done. Lornaliz is absolutely right, getting those referrals would be a very good idea. I do hope you are able to get some help in this matter. Often, the not knowing is worse than having the answer!

    Robin.

  • FormerMember
    FormerMember in reply to court

    Hi Darkhorse123

    I would also like to say hello and welcome to the forum.

    I am so sorry to hear about your husband and his family's history of cancer.

    Court has given you some useful information, and I would also suggest that you contact Lynch Syndrome UK, it was set up about 11 years ago.  Court is right that a member on here, who I met several times, worked very hard, together with a small group of other people who had family histories of bowel cancer to get the Lynch Syndrome charity up and running.  The website is www.lynch-syndrome-uk.org and you will be able to get lots of useful information and contacts from there.  If you also look on the Bowel Cancer UK website, they have a link to the NICE guidelines on Lynch Syndrome.

    I was diagnosed 11 years ago and I know that it was difficult to access gene testing for Lynch Syndrome at that time, but I understand that access to testing, if you meet a certain criteria, is easier now.

    Take care,

    VickiLynne