Hi guys thanks for your feedback.  Agree, it's great to have our own NZ place to chat and share. Let me know if you want any additional categories added.

twonewboobs - your are so right, your new boobs and flat tummy look amazing, so pleased for you. We are incredibly lucky to have the wonderful Jeremy Simcock in this town.

Honey - your Mum doesn't have to be the tested first, but I believe that it is a preference to test a person who has or has had the cancer first. The reason being that if they test you first and it comes back negative, then that still doesnt mean it's not in your family you might simply not have inherited it.  However if the gene is in your family and your Mum has had breast cancer, then it is more than likely that it will be found in her.  But it sounds like your on the right track and are talking to the right people.  Good luck, keep us posted.   

We will be putting an FAQ section up on the website very soon.  We have submitted a number of questions to the NZ Genetics Team and should have them back very soon, watch this space

Yay, signs of life!
Good (small but perfectly formed...) coffee catch up at the Vicarage yesterday.
One of the things that keeps striking me about BRCA is how diverse we all are, and how individual our responses are to finding ourselves in this predicament. Which is also what makes decisions so very hard - nobody will (or should) ever tell anybody else how they should handle it. So it can be a very lonely place to be.
Hopefully this site and this group will give people impacted by hereditary breast and ovarian cancer (HBOC) a place to thrash out the issues and get clarity in their own thinking about what is right for them.
Honey, your Mum has done so well. I'm sorry about your sister - that is awfully young.
You need to be prepared for a third option besides 'positive' or 'negative' - and that's what my family ended up with when my Mum was tested: the dreaded 'uninformative negative'. You can't get a true negative, like Nic explained, unless, say, your Mum has tested positive and they can ID exactly the mutation they found in her.
Uninformative Negatives are quite common - I read somewhere around 30%, and they put you in a difficult position because you're just guessing at that point. And they still have to treat you like you're high risk (i.e like a cancer survivor - all that surveillance!) because they know that BRCA 1 & 2 (the only ones they know about) won't be the only bad-ass genes out there. They just haven't identified the full spectrum yet.

Sandi, it's great to see you here. I will have to go back and read your story. Have you looked into reconstruction options yet? One thing I learned along the way was that it's really, really important to get more than one opinion and ask the plastic surgeon what range of options they offer. Some will only offer you what it is that they do - even if there is a better option out there for you. There was a great piece in the New York times about this last year, I'll flick it to Nic to put up on the site.

Hi Mumof2, it's such a hard decision, isn't it?
I had my ovaries out at 40 (6 months before the mastectomies) and for me it was a really easy experience. I had HRT and never had any menopausal symptoms at all.
Even when they made me stop the HRT last month for 5 days after my DIEP (I was terrified I would turn into a raving menopausal lunatic: I didn't) I was fine.
I know it's not like that for everyone, especially since clinical menopause is so sudden and such a wallop if you can't/won't use HRT.
I wasn't really up to play with the BC risk associated with HRT - which sounds crazy when I look back it at, but it had never really entered my universe. My gynae, who gave me the HRT was relaxed about it, said I'd halved my BC risk  with the ooph and I didn't even need close surveillance of my breasts any more. Wrong ,wrong, wrong - as I found out when I dug further. When I did have the mastectomies 6 mths later they found LCIS and decided maybe I'd need to stop the HRT. I had to see an oncologist, he was happy for me to continue on the basis that my BC risk after the mastectomies/ooph combined was so low.
It's a really individual decision - for me, I was happy to take the tiny remaining BC risk for me with the HRT given the risks of NOT taking it - my endocronologist explained that 40 is way too young to go without estrogen altogether because of risks to heart, brain etc...

Hi again Sandi
I lived for a bit over a year without breasts after my first reconstruction failed.
When I had the  mastectomies and immediate recon it seemed like recon was an OK thing to do, but I really struggled with going through all that risk (any surgery being risky - let alone a 10 hour plus one) again on its own and just for the aesthetics.
What I discovered in that year was that for me, having breasts matters much more than I thought it did. I was never exactly happy with the ones I had, but being totally flat made me feel flawed and defective. I know that's not everybody's view, I really admire the people who feel whole/not disfigured and are happy to be flat. But I could never get myself to that space.
I didn't understand what people meant when they said they didn't feel whole until they got breasts again until I went without. I totally 'got it' the minute I woke up with my new ones. It sounds crazy, and it's hard to rationalise why or how, but I felt complete again.
The sort of reconstruction you're talking about is implant reconstruction. I'm not a fan of it, having done both  now (this latest surgery, a variation of 'DIEP', used my stomach tissue, skin and blood supply to make new breasts). But I had a particularly bad experience with them, so am maybe not the best example.
You really do need to do your homework and do as much talking to people who know about this stuff as you can.You also have to find out what is right/possible for you, as there are many different kinds of reconstruction. Not everyone can have a DIEP, for example, because not everyone has enough fat.
Whichever path you go down don't do what I did and just take the first opinion just because it's all so hard and stressful and you feel like you just want it over and done with...

Hi Sandi
I think you really need to shop around...get more than one referral from your breast surgeon. Ask who's best in town for implants/who does Trams/who does DIEPs etc. Call me mistrustful, but I would just never settle for one opinion from one surgeon again. If you've got good health insurance it'll all be covered.
I actually talked to surgeons in Auckland and Hamilton when I was shopping for a DIEP-doc. By then I had already narrowed the options. I knew I wanted to use my own tissue, not implants, and that I would prefer to get rid of my baby-belly than use fat from anywhere else. The DIEP doesn't use any muscle, that's the difference between it and the old fashioned TRAM flap (which is what most plastic surgeons do - hardly anyone has the experience in NZ for DIEPs, I found 3 in the whole country with anywhere near the numbers you'd consider putting yourself on the table for). That's why the DIEP is so popular - the fact they don't mess with your muscle.
The most experienced DIEP surgeon of all is here in CHC. In the end I decided to go with him because he has the numbers (done more than 50 - a lot for NZ) and because I came to learn on my travels that it's about more than just the skills of the surgeon - the nursing care, quick access to theatre if things go wrong etc afterwards is critical to the success of the whole thing. So you need to go somewhere they are experienced in nursing these sorts of cases.
I found the guy in Hamilton to be the most useful of all, though, because I'd ruled him out early in the piece (didn't want to end up in Hamilton on my own, at least in AKL I had people I knew...) and he was happy to provide a sort of an 'independent' perspective on all my options. Cost a bit, but I considered it money really well spent. I was so comfortable with my decision, knowing I'd done all my homework, that I never doubted for a second that I was in the right hands and that I'd made the best choice. With a surgery like this that really matters. You have a lot of contact for an extended period of time with whoever you settle on, and things don't always go 100% to plan. It's really important to be able to talk things through and feel that you are on the same wavelength, but also to be able to trust them, because very often you really have no choice - you just don't have the knowledge/experience to be able to deal to it in any other way.
Happy to pass on the names of the surgeons I know of in AKL and HLZ if that's helpful, I did quite a bit of research to get the names! Have Nic send you my email addy if you want.

HI everyone,
I am new to all this, only found out i am brca1 positive 2 months ago. Do i have to pay for any surgery i need to get or is it covered on the public system. I have no health insurance. Already been turned down for a increase in my life insurance that i needed to cover business loan.

Hi everyone. I'm BRCA 1 positive and have known for nearly 10 years. I found my lump 21 months ago and underwent a double mastectomy. At the same time I had my reconstruction done in which I had tissue expanders. I wanted my surgery done pretty quickly so hence I didn't have alot of time to do alot of research. I haven't had any problems with this form of reconstruction and am booked in for my exchange operation where they remove the expanders and replace with silicone ones at the end of July. My recovery from the initial operation was about 6 weeks and was never in any pain. I had it done at St Georges where they were fantastic. I guess every procedure effects people in different ways but I have to say I'm extremely happy with what I've got. I'm with Mumof2 with checking with your insurance provider if they will cover you. I'm with Unimed and they covered me but I'm wanting to have a prophylatic oophorectomy(?) but have said that they won't cover as there is no medical reason.

Hi all
Insurance is a really messy one. I had a fight with my income insurer, who decided upon hearing about the mastectomies that they wouldn't insure me at all for ANY kind of cancer. I finally got a back-down on the basis that 1) I'd reduced my risk so far with the surgeries that they were way below that of the average woman b) genetic breast/ovarian cancer disposition doesn't up your risk of ALL cancers, and I'm not even clearly BRCA anything and c) I managed to dig out some info about the insurance companies agreeing to some human rights thing around genetic predispositions (I think the agreement was that they wouldn't discriminate on the basis of them) from a few years ago. The mere mention of the words 'human rights' was enough to prompt a hasty phone call from the CEO in Wellington, no less. Might have had something to do with me wondering out loud whether this would be the sort of issue Close Up could really get their teeth into...
You really need to go in there armed with facts - and it's very hit and miss. There is so much ignorance about these issues and people jump to all sorts of conclusions w/out necessarily having any basis for them.
With Southern Cross I got letters from my gynae and the breast surgeon to support a special application and they approved it. But I know Nic was saying that people with much stronger family histories have been turned down.
On the upside, a life or income insurance policy I had had a clause in it I didn't even know existed, which I found out about after the surgery. It paid out for LCIS that resulted in mastectomies, and they paid it, even though mine was the other way around - mastectomies that found LCIS. I only even found it the clause was there when I went to activate the income insurance. So it's worth looking into those things.
Sandi, your policy will specifically exclude prophylactic treatments (which these are), but don't be deterred. Ask them about putting in a special application to the chief medical officer @ SX, with supporting letters from your breast surgeon etc re why it is medically  necessary.
Amanda, if you have any heavy bleeding your gynae might support your application for an ooph on the basis of that. Mine offered to do this without me even asking (even though I didn't have any real issues), but I decided not to risk going down that path b/c I'd already consulted him a few times on the basis of the o/ca risk, and he had copious notes to that effect. I didn't want to take the risk of my insurance company finding out and pulling my health insurance cover out from under me.

Hi
Whole life insurance can be used in the retirement years as cash assets. It can provide equity for loans and have fixed payments that do not increase with time. Many times whole life insurance policies will pay dividends - although not always.

life insurance

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