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What age did you go down the preventative mastectomy route?

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Re: What age did you go down the preventative mastectomy route?

preventative surgery Hi Justine

This is my first time posting on here and actually my first time posting anywhere on the net! Hope I do it right!
I was reading your thread on the site and just wanted to write to share my experience of preventative mastectomy. I\'m 34 and a preventative double mastectomy about 7 weeks ago after finding that I had BRCA2 in November last year. A tough decision to make but absolutely the right decision for me. My Mum found out that she had BRCA2 about 3 years ago (just after her treatment for BC finished) and I pondered for a couple of years until my sister was diagnosed with BC last August age 30. My maternal grandmother and two of my Mum\'s sisters have also had BC.
I would have waited till I had completed my family (I have one son at moment) but my sisters diagnosis made up my mind for me. I still hope to have another child if possible (admittedly will miss breastfeeding if I do).
I was very nervous prior to surgery but feel very positive and well now and would be so happy to help anyone in a similar situation.

Take care,

Inga

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Re: What age did you go down the preventative mastectomy route?

Breast reconstruction choice Hi Lisa,

Hope you are ok, I know it is a hard set of issues to deal with it took me two years to fully get my head around things. You have a high chance of a negative gene test too though-like you I resigned myself to it being positive and in my case it was, but three of my Moms sisters tested negative.

As regards type of reconstruction. Yes I had a choice but only from reconstruction from tummy muscles (TRAM ) or reconstruction from back muscle (latissimus dorsi flap). My plastic surgeon was not prepared to reconstruct me using implants only as she felt it does not give the best cosmetic results

I choose to have reconstruction from my back as I didn\'t like the idea of using my stomach muscle, i was worried if I wanted another baby it might be more difficult. It was pure personal preference really. Some women choose the TRAM flap as it\'s like having a tummy tuck thrown in for free.

I had my reconstruction from my back muscle and my plastic surgeon mananged to use all my own muscle and fat in it.. I have had my nipple removed and my surgeon is going to reconstruct me a new one. My surgeon was adamant that I have these removed ,I did want to keep them! What I have had is major surgery and I\'ll not pretend it\'s been easy, but I am pleased with the results

I\'m not sure how much the reconstruction is influenced by size and body shape as they can always supplement your own tissue with an implant ,if you for example already have a washboard tummy.

I\'m no expert on reconstruction. I have gleaned a bit of information but I don\'t pretend it\'s all factually correct. You need to have a good chat with a breast care nurse and like your doing the breast surgeon. There are various booklets available, one published by breast cancer care- breast reconstruction.
Good luck
Joolz

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Re: What age did you go down the preventative mastectomy route?

Justine,

Gosh I didn\'t realise that they may not be able to find a fault if there is one, how often will they look at your mums blood ?

They have identified a BRAC2 fault in my family, down the male side, my mums dad had stomach cancer (not thought to be through the faulty gene), the main link is that his twin brother had breast cancer, his daughter, mums cousin got breast cancer aged 40ish, my grandad\'s sister had cervical/ovarian cancer and her daughter, got breast cancer aged 33 and died four years later (this was a long time ago)

I thought the programme was good, in terms of my thought process it was very similar to Becky\'s and the main thing for me was the surgery and how well it went for her. I realise that there wasn\'t a huge amount of information on genetics/hereditary bc and it didnt go into ovarian cancer, it wasn\'t supposed to be about that though. It made me feel better about things, and also made my mum feel a bit more at ease. I have found that people\'s initial reactions tend to be that it would be a mistake to remove healthy breasts (including my mum) but when you talk about the finer detail of what it means. The test is available for me when I want to have it, I want to see the surgeon first though with a clear non emotional head on, just waiting for the appointment which should be in the next couple of months, once I have done that it is a matter of booking in for the test, should be all sorted either way by end of Aug/September time.

Good look with your decision, it must be hard for you as you don\'t have a definate fault. Have you seen a genetic counsellor ? That might help, mine has been brilliant.

Lisa xx

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Re: What age did you go down the preventative mastectomy route?

Joolz,

Thanks for your reply. I have posted my reply yo Courtney on the other thread re the programme. It is great to hear different opinions, and comforting to know (whilst scary and almost unbelieveable) that there are so many women in the same/similar position to me.

I am waiting for an appointment with the breast surgeon, I want to know my options and be fully informed so that when I get my result and if the worst comes to the worst, I will know what to do. Once I have seen the surgeon I will have the test. If the result is positive I will opt for surgery I think as soon as I can. I do feel lucky that the test is available to me.

In terms of the type of reconstruction, did you get a choice or did your surgeon suggest the best option ? Does this depend on size/body shape etc ?

Thanks
Lisa xx

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Re: What age did you go down the preventative mastectomy route?

Hi Lisa,
I missed the programme in the end, I completely forgot about it (doh) but from what I\'m hearing its probably a good thing I did miss it.
I think the programme left out bits & pieces which can possibly leave people with the wrong information.
They believe our cancer gene was passed on from my grandfather who\'s mother died of bowel cancer in her early 40\'s. My mum was diagnosed with bc in 2003, and Addenbrooke\'s genetics clinic suggested a test for brca1&2 considering the family history, although she has so far tested negative (they test about 60-80% on the nhs which leaves plenty of room for error unfortunately). Mum is the only one who can be tested as both my aunts passed away. Addenbrookes have said that they will continue screening her blood against new genes as and when they are identified.
I think because I had a scare recently and with my gran\'s diagnosis it\'s made me feel very uneasy, and as I get older I get more worried about bc.
When do you get your results?
best of luck

Justine
x

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Re: What age did you go down the preventative mastectomy route?

Hi Lisa Hi Lisa,

I am having one side done at a time as I am having my breasts reconstructed using my back muscle and fat and my breast surgeon and plastic surgeon prefer to do one side at a time. There are quite a few options when it comes to reconstruction and you need to discuss this with your breast surgeon. A lot of people only have one operation and they might have their new breasts reconstructed form their tummy or have implants. I am very happy with the results so far. I like you felt that screening was not enough to rely on.

I have posted my opinion on the telly programme \"My breasts or my life\" on another thread. Some people felt it did not present all Beckys\' options and was sensationalist in tone.

Good luck in whatever you decide to do and if you want to ask me anymore questions I will gladly answer
Joolzc

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Re: What age did you go down the preventative mastectomy route?

Q\'s ??? Hi

I am 32 and going through the process of genetic testing, my mum has tested positive for BRAC2, bit of a strange one as came down the male side (my mums dad) one of my mums cousins was diagnosed at age 33.

I think I am certain that if I have a positive result I will definately have the preventative surgery. It sounds like you had one done at a time, was there a reason for this ? Did you watch the programme last night ? If so what did you think ? I watched and felt much better about things, but now I am confused as there is a thread stating that info was incorrect ?
Lisa xx

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Re: What age did you go down the preventative mastectomy route?

preventative surgery Hi Justine,

My mom was diagnosed with breast cancer when I was 27, shortly afterwards she was found to carry the BRCA1 gene. She was 50. My cousin was diagnosed a year after with breast cancer, she was 38. (Previous to this it didn\'t look as though b.c was genetic in the family as even though two of my moms sister had had it before 50 this was out of 8 sisters).

I am now 30 and have just had the first of my prophylatic mastectomies with reconstruction. I know this is young but considering my cousin was only 38, I didn\'t think it wise to delay. Plus I am pleased with the results as the new breast feels soft and looks great. My next operation is now in three weeks time. It\'s a big decision to make but I feel I have made the right one.
Joolz

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Re: What age did you go down the preventative mastectomy route?

What age did you go down the preventative mastectomy route? Hi everyone,
as a regular poster on here (and the other site lol) I\'ve been thinking a lot lately about going down the preventative mastectomy route, especially since my gran has just been diagnosed with terminal cancer (not bc), which makes her the fifth close family member to have been diagnosed with cancer. Mum is 3 years post diagnosis, my youngest aunt was 41 when diagnosed (although she must have had it at least a year the genetics clinic think) and 46 when the cancer came back, other aunt was 49. Mum has so far tested neg for brca1&2. I\'m 30 now, five years to wait until screening starts, and already had one scare.
For those of you who have had the surgery how many years before your relatives diagnosis did you have it?
hope that question makes sense
thanks
Justine
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What age did you go down the preventative mastectomy route?

What age did you go down the preventative mastectomy route?