1st genetics app today ...

WHOAH!!! Now I have stopped crying for an hour I can see the keyboard to type!! Been to my first genetics app this afternoon.I tried not to read too much about it and me and my husband went with an open mind.The consultant was soooo lovely and explained everything perfectly…but WOW my mind is blown I will need a degree at he end of all this…I was dx in May and finished active treatment 7 weeks ago I think today may have been a bit too early for me to deal with.I have 2 wonderful daughters 15 & 18 and all I want to do is protect them and know Iv done all I can.BC is in the family obvs and this is one hell of an emotional time for me.Although today I have learned my youngest has to be 18 if she needs tesing after me so we have a while to think about what to do… and sometimes tests come back inconclusive Think it wil take us 3 years to take it all in!! BRAIN OVERLOAD !! Ooo I feel better now though writing it down…thanks for reading :slight_smile:
Kate x

Hi Kate

It sounds like you’ve had a pretty emotional day. I’m sure the users of this site will be along to support you soon.

In the meantime if you need to talk things through or just to have some extra support please don’t hesitate to give the BCC helpline call on 0808 800 6000. The staff there can offer emotional support as well as practical information. The lines are open Monday to Friday 9.00 to 5.00 and Saturday 10.00 to 2.00.

Best wishes Sam, BCC Facilitator

Kate,
Everything must be a bit overwhelming at the moment, but it does calm down. Even if it does come back positive, does not mean that you have passed it on. Also screening and awareness is so much better than it used to be.
When I go my BRCA1 result my geneticist put it really well, she said ‘Your risk hasn’t changed, just your awareness of it’ This has now allowed me to make decisions about what I want to do, and entitled me to extra screening, so I now have MRIs as well as mammograms.
If you need to talk to someone the helpline is very good, there is also a specific National Hereditary Breast Cancer Helpline 01629 813000, run by a woman who has hereditary breast cancer, and her daughter as well. I haven’t spoken to them myself.
The Royal Marsden also has a good booklet about BRCA which you might find useful (link below)
royalmarsden.nhs.uk/consultants-teams-wards/clinical-units/cancer-genetics-unit/pages/brca-booklet.aspx
Hope you feel better when things have settled down a bit.
Jen

thank you Sam and Jen for your comments…I feel a bit better now than I did earlier and Jan I love that about the risk not changing just your awareness…very uplifting…after reading all your reply its all very lovely and calming and then I read mine again and I feel like a mad woman…lol…I felt like a mad woman a few hours ago!! thank you also for that link I will have a look:)
Take care
Kate x

hi kate

i was going to suggest the marsden booklet that jen has posted a link to… Its quite long and comprehensive but you can read read the chapters which are if most interest to you. And dip in and out if it.

Breast cancer genetics can be completely confusing but if your still feeling a bit lost ask to go back and see your genetic counsellor again.

when i was diagnosed with brca 2 my kids were 18 and 15 and id had bc twice and went on to get it a third time. I thought they would both jump at the chance to be tested after seeing me go through treatment… They are now 21 and 18 and although they say will get tested at somepoint neither is in any hurry to do it in the short term… My 18 yr old son always said he wanted to know even before he was 18 but now he is able to have it done he doesnt seem so bothered.

i would like them to get tested but that is for my own selfish reasons in the hope i havent passed it on. But i know its their decision and i do feel a bit guilty that they have this added worry of potentially having a gene when it didnt even cross my mind till i was in my 30s.

breast cancer is very rare under age 25 even in genetic families so you still have a bit of time to decide what to do yourself and what they want to do.

also even though your family may appear to fit the criteria for testing only around 20% of the high risk families tested are actually positive for a gene change. So there is still a pretty high chance that you dont carry a mutation. And as jen says the screenng and awareness is much improved that hopefully your girls will have a good screening programme when the time comes.

all the best
Lulu x

thank you Lulu great info:) I feel much more comfortable with it all now…I have decided to have my blood taken on Thursday and genetics are going to store it for me while we think about it for a little while.As I said above I was only diagnosed with BC myself in May and have now finished active treatment so really Im still getting over ‘me’,My husband has been great and I know that I will definatley want to know if I have the gene…but not right now:)
thanks again Lulu
Take Care Kate x