Good news Jan glad your recovering well xx
So upset today. My youngest daughter just got her genetic result through and she has inherited the faulty gene! We are gutted.
It just goes on and on. 
Hi Blondbutbrainy,
If you need someone to talk to away from the family then the helpline staff are here to support you. Do give them a ring, lines are open now until 5pm this evening, the call is free, 0808 800 6000.
Take care,
Jo, Facilitator
hello jan,
just came on to send you a massive cyber hug. wish i could make it better in some way. try to remember that it is not a diagnosis of cancer. i think it is better to know as she can now think about how she wants to manage her risk. even as i write all this, not sure if i believe it though, my own daughter is just 5 years old and cant bear to think of her having to deal with all this.
am sure you have been a terrific role model Jan. thank goodness you are there to support her and show her there is a way through all this.
best wishes, rattles xx
Thank you Jo and Rattles. You are so kind. We all feel a bit better now (although I’m crying as I type this) and my daughter, who is a feisty young woman, is adamant she just wants her breasts off! She said that her friend said ‘surely you would rather lose your breasts than lose your life’ and my daughter replied that she would rather lose her breasts than her hair! (She’s got wonderful hair). She also said the only thing she wants is to be there for her daughter who is my wonderful 2 year old grand-daughter. We will do everything we can to support her through this.
Thanks again.
Best wishes
Jan
x
oh Jan im gutted for you and your daughter… but she sounds like she has her head around it… remeber not everybody with a mutation gets cancer.
have you heard of the national hereditary cancer helpline… they can give lots of support especially for people planning risk reducing surgery…
http://www.breastcancergenetics.co.uk/
my 21 yr old daughter and 18 yr old son havent been tested yet but they are both considering it… i think i am more nervous about it than they are.
love and best wishes
Lulu x
Thanks so much Lulu. You are always so supportive! I don’t know what we would all do without you. Now my sister and brother have both tested positive for the gene too! 
So, so far, out of my mother’s five children, four of us (we are assuming my sister who died inherited it too) have got the faulty gene. My youngest brother doesn’t want to be tested though. Lots of my nieces and nephews are now considering being tested too. Thanks too for the link. That is most helpful.
Jan
x
Jan sorry to hear your sis and bro are also positive… my family have been pretty lucky so far as my sis was neg and my dads bro was also neg…
so it must be such a worry with a big family.
lulu xx
I read this post with interest too as I’m starting to look at my options for risk-reducing mesures.
I’m nearly 39, mum of 2, BRCA2+. My Mum, a BRCA2 carrier, had BC (2xs) and is thankfully a surviror. Her half-sister passed at 35 of BC. My sister (40) recently tested and is Negative
Recently met with gynecology/oncology and know what to expect with an oophorectomy. I was hesitant to take HRTs but now I’m feeling better about this who proceedure, along with recovery and what to expect.
Mid-week, I’ll be meeting **with of Norfolk & Norwich to undestand the breast options - this is the part I’m SOOO afraid of - the pain and recovery time, etc.
Trying to get my head around it all and it just spins & spins.
Hi hepsie
like you i had my head around the oophorectomy and had that done in 2010, but the breast surgery i have found hard to come to a decision despite having had BC x3… just saw my surgeon and onc during the week… onc quite keen for me to discuss surgery but surgeon isnt in any hurray so planning to see him next year as that will be two years from the end of my last treatment and hopefully my body will have recovered recovered enough from chemo and rads so that there shouldnt be any complications following surgery.
good luck
Hi Lulu,
I had the double reconstruction using the LD Flap (I think I wrote above that I had the DIEP method but that was wrong) on September 21st and then oopherectomy at beginning of Nov. Yesterday I went to see a friend who I’d met through chemo and she had double recon using LD on one side and strattice on the other side around 8 weeks ago. Although we both agreed that the op is not at all nice and you are quite incapacitated for a while afterwards, we both absolutely feel that it was the right thing to do and feel much more positive both mentally and physically! Both of us are experiencing quite traumatic events in other areas of our lives that are not at all good but in respect to BC and all the peripheral s… we really are feeling good!
Hope this helps.
Love
Jan
I meant to say that I am accompanying my daughter who has got the BRACA 2 gene too to see the specialist next week. She is determined to have a double mx and reconstruction and I am doing everything I can to support her. I want to help her to get the best possible outcome aesthetically too. Do you know what options are available to someone like her who a) has got high risk due to the gene but b) hasn’t actually had BC yet. I’ve tried to research what Michelle Heaton had done but I can’t find it anywhere. My daughter is 28.
Love
x
Blonde
I think whe will obviously be offered bi lateral MX but she will probably have to have counselling first and also possible removal of ovaries again when is ready and had children etc.
There is also another option of going on tamoxifen and annual ultrasound screening from 30 years old which doesn’t really have much appeal especially tamoxifen virtually for life .
My daughter has already decided what she is going to push for and we have nt even had results of genetics but been told as I am TN and had BC twice it is looking like I might have the gene and if i haven’t the are other genes out there that they don’t understand yet.
I am also going to discuss surgery tomorrow for MX for affected side and also MX on other side .
Out of interest are you TN?
Wishing your daughter luck and courage with whatever she decided. Hugs to you both
Wendy
Hi Wendy,
She has already decided to have the double mx with reconstruction and has spoken to a specialist who accepts that it is what she wants. I had TN BC before getting the BRACA 2 diagnosis. However, my sister who sadly died of BC 18 months ago didn’t have TN BC so it is not at all straight forward in that respect is it? It is really the type of recon we are not sure about. I know that there are slightly different options for those who are having it all done prophylactically but will hopefully find out what they are next week. We are definitely going to ask for a referral to a specialist plastic surgeon which will mean going to a different hospital I think. We are in South Yorkshire and I think that Nottingham is the nearest unit which has a very good reputation and specializes in this type of work. I will definitely report back when we find out more!
Jan
x
Hi Jan I agree with Wendy that they will offer bilateral breast surgery to minimise her risk. It reduces her risk of getting BC by around 95% but doesn’t remove the risk completely… So this is why she should have counselling before making a final decision. In addition there can be complications and that a bilateral mx and recon can actually be the first of a series of operations over the next few years.
The type of recon she will be offered is normally the same options as for women with bc And will depend on her own body shape, her own expectations and the surgeons experience… But if her surgeon cannot offer the surgery she wants she needs to request a referral to discuss it with another surgeon who can do her preferred surgery. DIEP and TRAM are more specialised micro surgery where as LD and strattice are normally able to be done by most breast and plastic surgeons. I have you’ve that women without cancer who have risk reducing surgery sometimes experience a more difficult time following survey as their new breasts are not perfect. Those with cancer often feel relieved the cancer is removed and in some cases are just thankful to have 2 boobs no matter how good for bad the recon is.
the tamoxifen option is still in its early stages so this may not be an option yet. I was told it wasn’t available in Scotland prophilactically yet when I saw my onc during the week so suspect it’s the same in England.
Also they shouldn’t be offering ultrasound as a screening method as its completely unreliable as the chance of operator error Is extremely high in the absence of a physical symptom. However if she chooses not to have the mx she should be offered annual Mammo and breast MRI from age 30-50.
In terms of ovarian cancer risk there is no reliable screening available. They advise oophorectomy or ooph plus hysterectomy around age 40 or after you have completed your family. The risk for ovarian ca tends to be an older onset than breast but still at a younger age than the general population… So the risk for ov ca is highest around age 50 than after 60.
wendy my first cancer was hormone positive when I was 37 second one three years later was triple neg as was the recurrence in my lymph nodes 2 years after that.
the most recent research has indicated around 20% of women with TNBC diagnosed under age 50 will be found to carry A brca gene mutation. So that still means an 80% chance you won’t so keeping my fingers crossed.
lulu xxx
Jan
i think it’s not a case of offering different recons to no BC patients but that women who have had treatment wont be limited by the surgery they have had previously or by radiotherapy treatment. Eg if you have scars from previous lumpectomy or mastectomy then the blood supply could potentially be cut off to certain parts of the breast or if you have had radiotherapy the skin may not stretch enough to give a good cosmetic appearance or maybe very painful.
There are some very specialist techniques like taking flaps from the thighs or buttocks but these are usually done of there isn’t any tissue to use elsewhere and she would maybe have to go further afield to get this done as it only a few plastic surgeons that do them.
My friend had an LD at Nottingham and was pleased with it but had a huge waiting list so was quite a long wait to get the surgery and even longer for lipofill and nipples… But that might depend on which surgeon she seen.
there are some good booklets on BCC and Macmillan on risk reducing breast surgery. The mac one has pics of real women rather than cartoon type pics in the BCC one. But also your daughter might want to join some of the brca websites… Brca sisterhood is a Facebook group and mainly American but also check brca umbrella which is based in the UK and they have before and after pics of different types of recons including what can go wrong.
best wishes
Lulu xxx
Hi,
I’ve been scouring the internet and also the main BC forums and they talk there of reconstruction with just implants. I wasn’t offered this though and I wonder if this is only suitable to certain women who may not have had invasive BC. It is the most straightforward of the reconstruction techniques according to the info and, as my daughter is very slim, I can’t really see her being offered the LD or Diep or any of the others. I would have loved just to have implants so am not sure who is eligible for this and who is not.
Advice very welcome!
Jan
x
Hi jan I have been offered a a tissue expander implant. It is placed under the muscle and inflated to oversized and then reduced to give a more natural shape. It is then like a silicone implant and is permenant. this is obviously less invasive surgery. If you can get hold of the book Breast reconstruction your choice by Dick Rainsbury &Virginia Straker it is very informative and gives you all options in plain language . My surgeon lent this book to me and apparently some of his work is pictured in there.
I am booked in for surgery 25th April but now looks like I have to have rads so wil probably have reconstruction after rads and have MX other side at the point.
Still waiting for the results of my BRCA and my daughter is looking forward to getting new boobs !!
Wendy
Hi - my surgeon lent me the same book prior to my double reconstruction using the LD flap method but he didn’t give me the option of just implants, expander or otherwise. I would definitely have preferred that. I had had rads though after chemo/mx etc etc.
I’m hoping my daughter won’t have to undergo the same recon surgery as mine as, although I am pleased I had it done, it was not at all easy and the results, while looking fine in clothes are not particularly pretty without!
Jan
x
Hi there,
My daughter had her appointment with the consultant breast surgeon and she said that, because my daughter is very slim and hasn’t got nor wants large breasts, the implant with possibly an expander and some use of strattice or another type of animal skin would indeed be the best option for her. She also said that this was the simplest of the recon surgeries which is also a big advantage in my opinion. However, she showed us some pretty awful pictures from 2008 as samples of her work and, while she was very nice indeed, didn’t really inspire confidence regarding the outcomes visually. We have come to the conclusion that my daughter should really ask for a referral to a specialist plastic surgeon as, (I think you are absolutely right Lulu here), she may feel very dissatisfied with the outcome otherwise. The consultant also said that complications leading to further surgery ran at around 50% for reconstruction surgery which sounds pretty high to me.
Does anyone have experience of how to get a referral and how to find the best place to go? Any advice would be very much appreciated.
Jan
x