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Member
Posts: 1
Registered: ‎25-05-2016

Re: Brca2 double mastectomy and reconstruction

Hi there. I have just been accepted for a risk reducing procedure - and have been told it will be in 12 months time. I am now researching various options eg type of reconstruction, whether to keep nipples etc.

How did you go about researching your options? and how are you now post operation?  Has it affected you emotionally or psychologically?

 

Hope you are ok!

 

Paula

 

Community Manager
Posts: 49
Registered: ‎01-12-2014

Re: Brca2 double mastectomy and reconstruction

[ Edited ]

Hi Vickstar77

 

You may be interested in our new pilot service for people who have been confirmed as BRCA1 or 2 carriers. The Being a Gene Carrier service combines a themed talk from an expert speaker with an opportunity to meet other gene carriers to share experiences and engage with. The free service is taking place in central London starting in January.

 

Kind regards

Nik

Breast Cancer Care

Member
Posts: 863
Registered: ‎09-11-2015

Re: Brca2 double mastectomy and reconstruction

[ Edited ]

Hi Vickstar77, 

 

I am sorry to hear you are going through this difficult time and when facing these challenges talking to someone who has been there themselves can help. It is great to see our users have already been along to offer their support.

 

In the meantime you could contact our Someone Like Me service who can put you in touch with someone who has had similar experiences to yourself and can offer you support.

 

You can call the Someone Like Me service at 0345 077 1893 or email them at someonelikeme@breastcancercare.org.uk .

 

Best wishes, 

 

Lizzy 

Member
Posts: 2
Registered: ‎28-11-2015

Re: Brca2 double mastectomy and reconstruction

Hi. Do you know about Maggies Wallace Center it is located in Cambridge.At Maggie’s you can talk to, and get support from, a range of professional people. Our Centres are staffed by Cancer Support Specialists, Benefits Advisors, Nutritionists and Psychologists who can support you in whichever way best suits your needs. Im in Cambridge if you want to visit we can meet up there.I want to see  someone who has been through surgery. I had reasontly Nutritionists course and massage its great.

Hope see you soon x

Member
Posts: 6
Registered: ‎06-08-2015

Re: Brca2 double mastectomy and reconstruction

Hi , I'm not aware of a group but would be a brilliant idea. I was linked up to someone who had also been through surgery which helped. Although a group would be amazing xx
Member
Posts: 2
Registered: ‎28-11-2015

Re: Brca2 double mastectomy and reconstruction

Hi I  just came across you forum. Im from Cambridge. I m also need to do my preventive surgery next year. Can I ask if its any group in Bedford to see more people like me. Thanks

Member
Posts: 6
Registered: ‎04-12-2012

Re: Brca2 double mastectomy and reconstruction

I live North of Northampton and my nearest hospital is the General in Northampton. I had skin sparing bilateral mastectomy with Beckers (as I mentioned before). No diagnosis of cancer, but strong family history.  The Beckers are permanent expander implants, so will not need replacing (just expanding over a period of time).  I wasn't given the option of saving my nipples, so will have that procedure done at the end of this journey. 

 

I have now had my first "fill" and was feeling quite anxious before my appointment, but I am delighted to say it went smoothly and I feel fine - no pain or pressure at all.  I hope it continues the same way. I am lucky that the Hospital team are very friendly and made me feel at ease so I am not worried about future saline fills.  The only drawback with this procedure is the length of time it takes.

 

Good news that you have been able to extend your sickness leave.  I will probably return to work on reduced hours for a little while, but I won't decide until later this month.

 X

Member
Posts: 6
Registered: ‎06-08-2015

Re: Brca2 double mastectomy and reconstruction

Do you live in Northampton ? I'm in Bedford so not too far away!
Just been to gp and been signed off for two more weeks so more time to recover which is nice !
I had bilateral risk reducing nipple sparing mastectomy and IBR with implant and ADM, all was completed at same time so do not need to have further implant. They are so hard though feel like rocks !!! X
Member
Posts: 6
Registered: ‎04-12-2012

Re: Brca2 double mastectomy and reconstruction

My surgery was in Northampton and I was looked after brilliantly by the team.  

 

The Becker implants do feel very firm, but I understand they soften over time, especially once the inflation process gets under way - although, please correct me if you know otherwise! 

 

I am not returning to work for another three weeks, but I feel for you if you're returning soon. There is no way I could return yet despite healing well. I work in central London, and my total daily commute is about 5 hours (which for me is too much so soon after surgery).

 

What kind of reconstruction did you have?

x

 

 

Member
Posts: 6
Registered: ‎06-08-2015

Re: Brca2 double mastectomy and reconstruction

Hi ya how are you doing ! Where did you have surgery? I had Dr gui at the royal marsden. I'm so pleased with the reconstruction ! Still sore and they are very hard too ! Not much movement! I'm due back at work which will be a struggle !!xxx
Member
Posts: 6
Registered: ‎06-08-2015

Re: Brca2 double mastectomy and reconstruction

Hi ! I'm so sorry for late reply! I had preventative surgery as I have BRCA2 gene.
My surgery was a double mastectomy and reconstruction xxx
I hope you are recovering well xxxx
Member
Posts: 6
Registered: ‎04-12-2012

Re: Brca2 double mastectomy and reconstruction

Hi,

Snap!

I also had bilateral mastectomy with reconstruction on 28th July as preventative surgery. How are you feeling now, better I hope?

 

I had Becker implants and am awaiting my first fill (tomorrow - yikes). I am feeling anxious tonight as I don't know what to expect during my consultation tomorrow morning.

 

I hope you're healing ok.

Deb

Member
Posts: 107
Registered: ‎02-06-2015

Re: Brca2 double mastectomy and reconstruction

Hi Vickstar, I hope you are healing well, I am currently awaiting surgery for the same procedure but have already had the cancer removed and need to decide how to proceed.

Can I ask what type of operation you have had because I am confused right now.

Many thanks, Suzie x
Member
Posts: 6
Registered: ‎06-08-2015

Re: Brca2 double mastectomy and reconstruction

Thank you xx
Highlighted
Member
Posts: 7,026
Registered: ‎01-05-2012

Re: Brca2 double mastectomy and reconstruction

Hi Vicstar77

 

Welcome to the BCC discussion forums, you've come to the right place for some good, honest support from the many informed uses of this site, who I am sure will be along soon to offer that support.

 

In the meantime please feel free to call our helpline if you would like to talk to someone in confidence.  Lines open weekdays 9-5 and Saturdays 10-2.

 

Take care,

Jo, Moderator

Member
Posts: 6
Registered: ‎06-08-2015

Brca2 double mastectomy and reconstruction

Hi all , I had my operation on 28th July so I'm currently recovering.... Mine was preventative surgery .
I was just googling to see if there was any one that's experience this and came across this forum.
Currently pain level is high , I had my drains removed yesterday and since then the pain increased although I'm hoping it's because of my stretching ! I need to keep my arms supple !