Sister has BRAC2 - feeling very emotional.

[sisterlylove]

Thanks for the "hug" Pinkie

im def not brave in fact I'm quaking in my boots lol but for me I  know I have to do this!

my sister was diagnosed whilst awaiting prophylactic surgery so that gave me an added incentive not to delay!

that and so fed up living under a cloud.

I know I would be devastated if I got BC when I could of prevented it. But I also know ladies who just can't deal with the surgery so I feel for you and your dilemma .

please keep,posting and reading it may help with your decision.

SL x

[Pinkie]

Hello, Sisterly love, you have certainly shown you live up to your name here.  Thank you so much for your message and I have added a hug to this reply for you.  Golly, most poeple in BRCA groups are much braver than I am!  I do wish you well with your op - I guess sometimes you have to just bite the bullet - and hope all goes as well as it can; also it gives you some peace of mind.  Love Pinkie

[sisterlylove]

Hi Pinkie

im really sorry you have tested positive for BRCA2 but am pleased that you have all wheels in motion to help monitor you and getting good advice from the experts.

It is so hard when you have children that then have to be tested it is a very sad feeling I know.

i am bout to have a prophylactic double mastectomy and recon next month due to a dire family history of BC my family is not in the BRCA category but is deemed to be highly likely of a faulty gene yet to be discovered.

i too have daughters and am fearful for them they will embark of the monitoring route in due course.

it is a very personal journey deciding what to do but if I can help in any way please feel free to ask.

SL x

[Pinkie]

Hello Moijan and anyone else on this thread.  My sister sailed through her BSO and I have a lovely photo of her 3 weeks on looking more relaxed than I have known for months.  I received my BRCA results on Monday at the Clinic and tested positive for the same  mutation - BRCA2 with numbers after it.  I was so shocked that my mind blanked out any recollection iof being at the clinic.  I got to about 3 pm and could not remember anything that had happened that day.  My husband gave me the result sheet and told me about it.  Later I remembered some of the journey and the coffee we had beforehand but not when that happened.  I have emailed the Counsellor and the Psychologist and saw my GP who has been great.  He is arranging local Counselling for me as well as what Guy's Hospital offer me (I am under them but because I live in East Sussex, my two appointment with the Genetics Counsellor were at a Hastings clinic).  I am told it is selective short-term memory loss and am sure it will resolve.  I later remembered parts of the consultation and found it very painful.  I am keeping all options open.  I have applied to go for annual mammograms (this I had decided long ago) and to ask to see the Guy's Hospital Ovarian Surgeon in due course for a no obligation discussion about the BSO.  My doctor was not only helpful but also encouraging.  He pointed out that as I am physically fit there is no reason I should not sail through the BSO.  I was worried that it might make some other problems in that area worse.  However, the opposite is true - these problems can be fixed at the same time (and could later need surgery anyway). I emailed the Genetics Counsellor on the Tuesday morning to explain what had happened and asking her to fill in the gaps.  She filled in some there and then, saying she has sent a referral to Brighton (from where mammograms are managed) to set me up on the annual mammogram programme.  I have an appointment at Guy's Hospital on Wed 2 August with the Psychologist to help with these issues.  I am confident I will get through this, and, when clearer, make a sound decision about the BSO (my fear of it could become a window of opportunity, bearing in mind what my GP said).  However, any support is welcome.  My daughter now comes into play and wishes to be tested in due course.  She is 28, and as our mutation seems to kick in during 50s and 60s, appears to have youth on her side.  Apparently I get some paperwork for her and my GP explained how the system works for her (I wrote that down!).  So I will make a little "dossier" for her with everything in it I can think of for her to take it further in her own time.  She came round on Monday to see me and my sister phoned as well.  My sister, daughter and husband are all supportive.  I am very lucky in that and other respects in life, but would welcome any support from this Forum please. Thank you so much if you have managed to read this far.  Pinkie

[Eian01]

Hello Pinkie, there are no easy way to cope with it and so sorry to hear what you been through. Hope things will change positivly for you and the family..

[Pinkie]

Hello Moijan and thanks again for your reply, some months ago now.  My sister is having yearly mammograms, is still clear of Breast Cancer (over 5 years now) and opting for removal of ovaries and tubes in June.  My cousin has now been tested and awaits her results.  Neither want to talk about it, nor my brother, so I get my support from elsewhere.  I am due to be tested on 19th June, and will be so glad to get it over with as this has been hanging over me for so long.

However, in spite of emotions (and I am finding all sorts of support, thank goodness, including yours) I am well and happy much of the time.

I had an urgent referral following a one-off vaginal bleed - that was OK.  Better safe than sorry.  Getting creative these days - making myself a new dress, enjoying Art classes, music and going in the garden to mess about with plants when tit is warm.  Creativity seems to be the best thing to keep me emotionally well at the moment.  I have also started Pilates classes and enjoy these a lot.  And supportive husband and daughter, so a lot to be thankful for. 

Many thanks again. 

[Moijan]

Yes...you have a lot going on just nowxx

these things seem to take an age to unravel dont they? Hopefully yours now has a bit of a shortcut

So you get results quickly.

thinkng of youxx

Moijan💙💚💙

[Pinkie]

Hi Moijan

Thank you for your reply which means a lot to me.  Feeling a bit better today and getting into normal activities which help "carry" the emotions.  They are there and I think it best to sort of "make friends" with them rather than pushing them away.

Very early days - haven't got my sister's written report yet but my genetic counsellor has said I can email it to her and the referral for the further counselling (in London) will be by email so I am "in the system".

Spoke to my sister-in-law who is very grateful for what my sister and I have done to get the family history together and both of us getting initial genetic counselling and my sister persevering and getting her results - seemed to admire our courage - and will talk to my brother (her husband) at an opportune time.

Love  Pinkie xx

[Moijan]

Hi Pinkie,

Welcome to the forum xx you have just joined a new group of friends.

of course we will support you. Your family has had more  than its share of cancer...so sorry.

hopefully your own news will be good from the testing.

i am afraid.im not that familiar with BRCA2, but I am an old hand at suffering from anxiety and emotions re this disease. There are loads of lovely ladies on here who all have lots of love and kindness to share. We all come with different types of bc and from varying situations and im sure you will get loads of support.

we all know that the uncertainty is the very worst thing, so hopefully your results wont take a year.

do keep posting and let us know how it goes, we are all here for youxx

Hugs,

Moijan💚💚💚

[Moijan]

Hi Pinkie,

Welcome to the forum xx

of course we will. Your family has had more  than its share of cancer...so sorry.

hopefully your news will be good from the testing.

i am afraid.im not familiar with BRAC2, but I am an old hand at suffering from anxiety and emotions re this disease. There are loads of lovely ladies on here who all have lots of love and kindness to share. We all come with different types of bc and from varying situations and im sure you will get loads of support.

do keep posting and let us know how it goes, we are all here for youxx

Hugs,

Moijan💚💚💚

[Pinkie]

Hello Everyone.  I am Pinkie and a newbie.  My sister had Triple Negative Breast Cancer 5 years ago and is mercifully clear.  However as we had lost our Mother to Ovarian Cancer and her Father had had Breast Cancer and was of Armenian background with probable Ashkani Jewish ancestry, we both went into our family history and received genetic counselling.  It was recommended my sister was tested.  To date this process took a year.  2 days ago we got the results and my sister is BRAC2 positive.  I am making arrangements to be tested.  All I had to do was ring my genetic counsellor and she is doing the necessary referral.

My sister is actually very relieved.  I am in one way but finding my emotions hard. It feels like a "shadow waling on a grave" for want of a better description.  I am sure I will handle it OK and see the process through but I hadn't bargained for that one!

We have a brother abroad and my sister feels unable to approach him so I have taken that on and had a really helpful chat with his wife last night.  We all have families and there are 2 cousins to approach.  Quite a can of worms!

I am very, very fortunate not to have had a whisker of cancer to date.  I am mid sixties, my sister somewhat younger.  Please can you support me?? Thanks and love from Pinkie.