if one more person says to me...

I’ve just had genetic test results this afternoon that confirmed a rare condition called Peutz Jeghers Syndrome - increased risk of a range of cancers including breast (have recently have right DCIS and mx and am considering left preventative). I know people are trying to help and ‘put a positive spin’ but if one more person says to me ‘well at least now you’ll be monitored regularly, you’ll get better treatment than most people’ then I’m going to scream :slight_smile:

Has anyone else got any favourite ‘helpful’ responses people have made?

Hi lizred, 

I am sorry you are going through this and I am sure any users who have had a similar experience will be along soon to offer their support.

In the meantime you can always call our helpline on 0808 800 6000 who will be able to talk through any questions you may have and offer a friendly ear. The opening hours are below. 

Monday-Friday, 9am-5pm
Late opening Wednesday 9am-7pm
Saturday, 9am-1pm

Best wishes, 


I’m really sorry to hear your news Liz, I’m fed up of hearing …
Your so strong, It’ll be fine, It could be worse and like you "well they’ll keep a close eye on you now! ? Xx

thanks Clair, I’m not sure I’ve taken it in yet and I’m also worried about how to tell my son who is at a 50% risk of having it too (as its wider than BC it doens’t just affect women) - he tends to get anxious about things anyway so its going to be difficult for him waiting while he gets tested. Ah well, we should be good at managing these sort of things by now eh?! Hope all ok with you xx

Hi there

I just found out I have brca1 ‘changes’ from a gene test after finishing treatment for breast cancer. Annoying sayings - I’ve heard many

  • hair,boobs, ovaries don’t define you or make you any more of a woman!
  • it will grow back
    -at least your stil here
  • your so strong
  • I couldn’t do it
    -you need to look after yourself

How many of these have you heard lol