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Lynch Syndrome - am I selfish?

Lilly04
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Hi, sorry if this is a long post - I just don't know where else to turn. 
 

I'm 25 and my partner is 28, we've been together 3 years. Last year he was diagnosed with Lynch Syndrome after genetic testing (he's never been diagnosed with any form of cancer). He received genetic test as both his father and grandfather had bowel cancer at a young age. Sadly, his grandfather died at 40 and his father is 50 and has been diagnosed twice already. 
 

When my partner first recieved his diagnosis I thought of it as a positive thing (frequent testing, catching cancer early, extra vigilance etc) but more recently I've been thinking about it a lot and the thought of losing him young terrifies me. I've done my fair share of research into Lynch Syndrom so I know all the ins and outs but I can't shake the anxiety. 
 

A couple of months ago I had started to come to terms with it all and beame a lot more settled. Then just as that happened my partners dad got another bowel cancer diagnosis and yet more surgery to remove part of the bowel. Again, all seemed okay and I started to settle again as I saw how quickly it could be delt with. 
 

That brings us to today when my partner has just received the news that his dads cancer has spread and he only has a few months to live. He's going for surgery but docs have said there's a chance he won't survive. 
 

At the moment all my focus is on supporting my partner, however my anxiety about everything has just increased 10 fold. I have thought about ending our relationship for other reasons before but defided to stay as I do really love him but I'm so scared. I want to start having kids soon and with there being a 50% chance of passing the gene on I think I would feel guilty if they got it. I know it sounds selfish but I also don't want to out-live my partner and kids which could be a possiblity. I'm terrified and don't know if I can handle a relationship knowing I may have to deal with cancer or his death in the next 10-20 years or have to deal with passing it on and breaking the news to children. 
 

Am I as selfish as I feel for possibly wanting to end the relationship? Does anyone have any advice? Has anyone lived with Lynch? Anything would be so appreciated right now. 
 

Again sorry for the long post but thank you so much in advance.

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    Hi - I have no experience of Lynch syndrome but I do have experience of being a mum and the impacts a difficult genetic heritage can bring. A few thoughts which may or may not be helpful. Only you can make this decision. Go with your deep intuition neither blinded by love, pity or cold reason.

     - you mention you have previously thought about ending the relationship but for other reasons. Before having children you need to be certain of your relationship. Only when you are certain your partner is the man you both love and want to be the father of your children should you consider how Lynch complicates things further 

    - I am picking up that a big concern is one of knowingly passing on suffering 

     - would you consider genetic intervention (is that an option for Lynch - I don't know and some people don't like to consider those kind of things but when you have seen a child or an adult suffer with little or no chance of a normal lifespan it changes perspective. Nurses on here may have more information)

    - there are continually advances being made regarding cancer treatments so that it isn't certain the syndrome would have the same impact on your children or partner as it has on your father-in-law and his father

    - I feel horribly guilty about not realising the genetic impact on my children as for one child especially it led to a lot of suffering which continues even now - obviously this can happen in any family but when it's knowable in advance that's somehow different 

    - your situation is different from mine because it sounds as if Lynch gives a normal childhood and the pain comes later whereas my child was suffering from baby stage 

    - love is important but it is not the be all and end all in relationships

    - don't rush a decision

    Do consider talking things through with someone who has better knowledge of Lynch (maybe try calling the nurse helpline for advice)

     

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