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Another family member!

13 REPLIES 13
Moderator
Community Manager

Re: Another family member!

Hi Debs Breast Cancer Care have written a factsheet called \'Famliial breast cancer\' which you may find helpful to read. You can read this via the following link or contact our helpline on 0808 800 6000 (open Monday to Friday 9am-5pm and Saturday 9am-2pm) for further information and a copy of the factsheet:

breastcancercare.org.uk/docs/familial_breast_cancer_updated
_may_06_0.pdf

Kind regards
BCC Host

belinda
Member

Re: Another family member!

Hi Debs, I have bc and bone mets, I\'m 47. My daughter is 27 and we are going to a genetic appointment in a few weeks time. I got my onc to refer me as I found out my Gran had died of ovarian cancer and her sister died of breast cancer.
My daughter is brill too, she\'s expecting her first baby in the New Year.
I wish we didn\'t have to do this but it\'s better (we both think) to be informed and find out about the gene and the options available.
As far as I know I will probably be asked to give some blood after the geneticist has had a look at my family tree.
I\'ve had a lot of helpful replies here, I\'ll post again after my appointment.
Belinda....x

Debzz1
Member

Re: Another family member!

can you help me re;daughters risk Hi everyone,in abit of a muddle,my two elder daughters have filled out the family history forms and theve been given in.....I have my youngest daughter too.My mother had bc and died sadly at 47,then I got it at 40 and again this may.When I told my family it was back they said that my older sister had just finished treatment for her bc,she didnt want me to know.(Shes down south Im in Scotland!)So,out of us 3 sisters 2 of us have had it plus Mum.What happens next?I went this morning to see my onc and hav xrays done -they were clear.So happy ,but feel guilty for not asking about blood tests for the gene.Can anyone explain how its found out.My girls are brill they say they will happily cope with chosen mastectomys.All of you take care ,Debs

debbi
Member

Re: Another family member!

spelling sorry about some of my spelling I am a bit pissed

debbi
Member

Re: Another family member!

hi birgit and kim birgit,I was really upset to read that your daughter does not want to know especially after your family history. I dont know how old your daughter is but please try and urge her just to go for tests,I am absolutely devasted that I might have passed this on to my children and I would want them to go for any test possible, i have just had a row with my teenage son actually about diabetes and cancer because he has a girkfreind who has diabetes and he said you do know you can die from diabetes dont you and I really had to bite my tongue.I am in a horrible situation with my mum and sister at the mo and they are really hiding their heads in the sand and it has been suggested by genetics that we are at a high risk level and my mum just does not beleive me and because of mum neither does my sister and I really do not know what else to say to them

Birgit
Member

Re: Another family member!

Family history Hi Kim

orry to hear your test results, but as you say not that much of a surprise. I thought I briefly tell you about our family, which might help a bit.

Every female member - going back 4 generations - has had BC and most have died from the disease. My mum is still around 20 years on - so that\'s the good news. But my sister has had numerous pre-cancerous cells in both breasts and opted finally for bi-laterial mastectomy (without reconstruction). Whilst she is obviously not very happy about loosing her boobs, it has given her some peace of mind and she was worn out by the numerous tests and hospital visits.

I was dx in 1999 and had since had a recurrence in 2005, so although terrible news, not that surprising. The problem is my daughter - my oncologist strongly recommends gene testing (although I can\'t really see the point with my family history!!), but my daughter is adamant that she does not want to know. As far as she is concerned, she would not want this hanging over her, just waiting for something to happen, and she would not be happy to have a preventative mastectomy. She has a young baby and is working and would not want to put herself through unnecessary surgery. As far as she is concerned, if it happens, she will then deal with it. She is also a Christian and feels that her faith will help with anything that life may or may not throw at her, and I support her fully in her choice. In the meantime they have offered here yearly mammos and she has been told to be extra vigilant with breast examinations.

Hope that this may help a little, I know everyone is different, and at the end of the day only you can decide.

Birgit

Lisa1974
Member

Re: Another family member!

Hi Kim

Bad luck eh - welcome to the club.

There is loads of info on the other site, see earlier post on this thread. There are loads of us there waiting for surgery, so we should be able to help.

There are options to private message on the other site which you may find useful.

Join and see what you think.
L xx

ps the scissor sisters were great, what did you think ?

SandyKim
Member

Re: Another family member!

Update! Hi all, just to let you know that I have joined the \'mutants\' (as we\'ve called outselves) in my family and also tested positive! It came as no great shock - I laughed actually - so much for their 50/50 1 in 2 chance. It would have been nice to have a bit of a break in the positives but then again, no surprise.

We are having our ovaries screened in January and we are on the waiting list for a breast MRI. Now my cousin and are starting the process of looking into the surgery options that are available to us.

I would be grateful to hear from any of you who have been down the preventative surgery route, having it done etc. and what you\'ve had done or decided to have done and perhaps your reasoning for it. There are so many options available its difficult to know where to start.

Look forward to hearing from you.

Kim
x

gingernut
Member

Re: Another family member!

I\'ll come too if I\'m up to it Hi Lisa,

Just spotted the date and location for the get together. I will come along too if i am up to it by then (its likely to be busy and i can\'t cope with crowds at the best of times)!
I can also show you how things are progressing with my recon - it might help you with your decision. I have taken photos each week since the op bit i look so awful at the moment i can\'t look at them myself let alone show them off!
I am going back to the clinic on Monday to see my consultant and i am expecting to have some saline put in the expanders.
I think one of the expanders has moved since the op - its much lower and further under my arm than it was so i\'m hoping it can be sorted out quickly.
i\'ll keep in touch
Gingernut X

Lisa1974
Member

Re: Another family member!

Hi Kim Hi Kim

Hope it is negative for you...

I am seeing the scissor sisters in Manchester on 6th Nov so let you know how it goes.

Before I got my test results I was exactly like you , I knew what I had to do and wanted to do. My date for surgery is 18th Jan - Yikes, just trying to make the decision on nipples !!!

The meeting arranged is 9th December - Trafford Centre. There is more information and ability to private message/email on the \"other\" site - the address is http://phpbbserver.com/breastcancer there is an area specifically for those affected by bc genetics and we have just set up a forum for private discussion, there are approx 10 of us all similar ages with surgery next year.

I can only understand your mums reaction to the positive gene fault, my mum has felt SO guilty too.

Anyway - fingers crossed for you and hope to see you on the other site soon, oh and don\'t forget to bring your cousin, the more the merrier !

L xx

SandyKim
Member

Re: Another family member!

Thanks guys! Thank you for your posts. I have been following your posts for quite a while, Lisa. If you have arranged that \'get together\' and I\'ve missed it, it must be time for another. If nothing has gone ahead yet, well, it\'s time we arranged something. I\'m sure my cousin (who has just tested positive) would be up for a gathering.

I\'m going out with my cousin on Thursday. I think she is coping really well with it! She hasn\'t decided what to do and she is keeping all of her options open, she will have any counselling that\'s going to make sure she makes the right decision for her - which I commend her for.

I have a real determination that I\'m going to get it before it gets me (if I test positive of course) - that\'s my idea of reverse psycology on my body; \'if she\'s thinking that she has the mutated gene, blow her, she can\'t have it\'. Do you think it might work??

The way I see November 10th is, if I have the gene - so what, I already know what needs to be done (not even \'I know what I want to do\'). If I test negative, what a bonus, my mum really does not have anything to feel guilty about. Do you know she was more upset about testing positive for BRCA2 than she was about finding out about her liver mets!! She just kept apologising! I can understand her reaction (as a mother myself) but it\'s so hard to convince her that it\'s all manufactured at conception - it\'s no-ones fault!

I have thought that if I do test positive that I would like tests done (i.e ultrasound on my breasts etc.) before I have any preventative surgery. Do you think they\'d allow that? I don\'t really know why, only that I want to make doubly sure that I haven\'t got it first - to make sure the surgery is not in vein!! I\'ve also got private health insurance - do they offer preventative surgery under your policy? I know it takes a simple call to find out but I don\'t want to tempt fate!

My reasoning at the moment is that our family can\'t be that unlucky - to have so many affected by breast cancer so mine must be negative - suits me for the moment! What I haven\'t yet really thought about is how I will feel if I am negative. The only feeling that springs to mind is \'GUILT\', guilt that my mum, aunty, cousin and god knows who else has it and I\'m lucky enough not to. They\'ll all be happy for me but I will feel guilty - I think! Who knows until the time comes.

Lisa, Helen, nice to hear from you both anyway. I\'ll let you know how I get on on the 10th. One good thing is I\'m off to see the Scissor Sisters the day after (my wedding anniversary) - it can\'t be all bad!!

Take care.

Kim
x

Lisa1974
Member

Re: Another family member!

Hi Kim

My mum tested positive 7 years ago for BRAC2. I didn\'t decide to do anything about it until recently. I am now 32.

I had the test and got the results in August, I was positive.

My thought process was quite different to a lot of ladies, but sounds like yours. Prior to having the test, I wanted to decide what I would do. Did loads of research and made the decision for preventative surgery before I had the blood taken. I have a provisional date for surgery 18th Jan. Whilst I am not looking forward to the surgery, I am looking forward to a time when I can worry less about getting bc and feel \"normal\" again. I do also feel lucky though to have the choice and can hopefully prevent myself from having to go through bc.

Take care, good luck and fingers crossed for a negative result for you.
Let us know

L x

SandyKim
Member

Re: Another family member!

Another family member! Our strong family history of breast cancer is not letting us down!!!!!! My cousin (31) was told today that she also carries the mutated BRCA2. That\'s three confirmed now, my mum, my aunty, and now my cousin. It\'s a wierd feeling, it\'s not nice to find this out but at least there is a reason for the breast cancer - a reason why the breast cancer is so strong in our family, a reason why my aunty and mum have already suffered so much.

I feel at a real advantage knowing that if I test positive (will find out November 10th) I can do something about it, before it gets me! I really feel that this gene holds the key to my future.

I have already decided that I want preventative surgery if I test positive - I don\'t ever want to find a lump, or have the constant worry of finding one, but most importantly, I don\'t want to go through what my mum has been through - and she\'s still fighting. I feel so lucky to have the opportunity to make that decision for myself.

Has anyone had the test and not gone for the results, or been reluctant to? Does anyone have a relative who has tested positive and decided against testing for themselves?

Love
Kim
x

SandyKim
Member

Another family member!

Another family member!