Advice needed for brac1 positive - preventive surgery

Hi and a very warm welcome to the online community

I'm not surprised that you're finding your recent discovery that you are at high risk of getting breast cancer and being told you need surgery overwhelming.

I haven't been in your position but I noticed that your post hadn't had any response. If you haven't already, if you type 'double mastectomy' and 'BSO surgery' separately into the search bar in this group, you should find previous posts mentioning these operations which you could have a read of. You could then reply to any of the more recent posts if you think the poster could help you further with your questions.

You could also join the main group and post your question there as there are bound to be ladies there who have had a double mastectomy or BSO surgery.

If you'd like to do this just click on the link I've created and then choose 'click to join' on the page that opens. You can then introduce yourself and post questions after selecting '+New' and join in with existing conversations by clicking on 'reply'. 

When you have a minute, it would be really useful if you could pop something about your journey so far into your profile as it really helps others when answering or looking for someone with a similar diagnosis. It also means that you don't have to keep repeating yourself. To do this click on your username and then select 'Profile'. You can amend it at any time and if you're not sure what to write you can take a look at mine by clicking on my username.

Wishing you all the best with whatever you decide to do

x

Hi Jones48

I have seen your post and hoping I can help in some way.  Just a little about me, I am 44, have survived Breast Cancer twice and have been confirmed BRCA1.  I underwent a Double Mastectomy with DIEP reconstruction with Oophorectomy in 2015 at the age of 38.

What you are going through is really hard and unfortunately unless you know anybody who has gone through the same thing, it can feel lonely.  

Making the decision to have surgery is a difficult one, you will probably change your mind a million times but for me once that decision was made I felt a sense of relief.  It is definitely not a decision that should be rushed and I am surprised you have been told you have to make it within a timeframe? At the end of the day it is your choice whether you continue with the screening with the chance of getting cancer but with hopeful early detection or you go down the full preventative route?

I was advised to have the DIEP surgery, purely as this was the better option for me after the cancer treatment I had gone through but I do have a family member who had implants.  We both had full nipple removal.  I guess it depends how attached to your nipples you are, for me, I wasn’t! I also didn’t want to take the risk of having tissue surviving which could potentially turn cancerous!

My surgery was done by a Plastic Surgeon  through the NHS rather than a Breast Surgeon, I am not sure which you were referred? I am sure it doesn’t matter but they do have different skill sets.  Don’t be afraid to keep asking questions to your surgeon, even the silly ones after all it is your body and you need all the facts before you make your decision!

I was fortunate that my surgery went extremely well, it was about a 10 hour operation, they did my breasts and ovaries in the same surgery and I was in hospital for 4 days. Recovery went extremely well and I had 8 weeks off work.

To be honest the whole experience was far less traumatic than I had played over and over in my head!

I have had a few lipofilling sessions to improve the shape and size and last year I had the nipple reconstruction, which after everything I had been through was a really difficult choice for me as I was used to not having any!  But why go through all that to not have the cherry on the top! I am just waiting for Tattooing and then I will be done!

It is difficult ever imaging what your new boobs will be like, will they be the same as the old ones? But you know, mine are, they are probably better! I love them! I know I am fortunate as I know there are some women who have had a totally different experience but you wanted a positive one and mine is!

I have absolutely no regrets with the decisions I have made. I have some new boobs which you can’t even tell are man made!

Having been through cancer, I wouldn’t wish that on anybody.  Hindsight it a wonderful thing but if I could go back in time I wouldn’t hesitate to go through the surgery if it would prevent me going through that!  Life isn’t fair and so many of us shouldn’t be having to make these choices but I am sure you will make the right decision for you!

 I am happy for you send me a friend request if you want to ask any further questions.  

I wish you all the luck in the world!

Regards

Shelly xx

Hi Shelly,

firstly thank you so much for answering my call for help, you are the first person that has made contact with me, I’m struggling to find many women out there who have had these surgery’s, my emotions are very up and down, my I’m slowly coming to terms with the fact I need to have these surgeries, I’m looking at doing the bso one this year and then doing the double mastectomy one early next year as this seems to be the one that’s going to take the time to recover from and terrifies me the most.

my sister is currently battling advanced Ovarian cancer which has been awful to watch and which is why I was able to be tested for the brac1 so in the space of 4 weeks I’ve found out I’m brac1 and now trying to look at all my options, I’m going to get a second opinion on the breast surgery, the surgeon told me I can’t have reconstruction and that implants will be the way, also no choice in size of implant too he will see when I’m in surgery which shocked me, do I not get the choice to size down? 
Im so grateful for your response and hope we can keep in touch

H x

Hi Jones,

I am a breast cancer surviver - BRCA2 (60 yo). I had skin and nipple saving bilateral mastectomy since my nipples were clean, PSO is planned. I can NOT understand why you can not keep your nipples !!. what can be the reason for that, you don't have cancer.  If I were you I insist on doctors to explain why.

Do your best to keep your skin and nipples. 

Hugs

Yeliz 

Hello,

I’ve only just seen this and hoping you’ve found some peace with everything and aren’t struggling too much.

I’m also BRCA1 and I had a double mastectomy 4 years ago.

i struggled with it a lot too, who wouldn’t,  and I preferred my real boobs to the ones I have now but the 80% chance of getting cancer was too high for me!

My Mum has the gene and was diagnosed with breast cancer a few months ago, she’s 72 and has dementia and it’s devastating! 

I’ll never regret my decision.

Boobs for me are only a small thing in comparison to a lovely life without cancer.

Amy x

Hi. I’m BRCA1 but it was found after cancer. I had the bad news of telling my kids though and my oldest who is 31 has tested positive and has just started her journey. It is scary but try and get as much info as possible. Breast cancer now do a ‘someone like me’ service where they match u. I talked to someone who was BRCA positive. It’s a great service. Thinking of u xxx

hiya I am in a similar situations, and would like to know how you are getting on now?

Hi I've only just seen this thread. Hope ypu have had some support in making a decision. 

If you are unhappy with your surgeon then ask for a second opinion. You should be able to have nipple sparing if that is your choice. 

In terms of size then re-iterate what you want, I remember being panicked about being too big and my new boobs being noticeably different. I was a A/B cup before and am now a B/C. I pursued a DIEP flap, but was advised I didn't have enough tissue to do this as at the time was too slim.

I chose non nipple sparing as just wanted everything gone. Size wise they told me they'd had to go slightly larger on the implant as the mastectomy and removal of breast tissue reduces the apex of the boob, more so if you don't keep your nipple, so I had to go slightly larger so the overall look afterwards is round enough to suggest a boob.

I am now 6 years post op and more than happy with what I have.

A lot of my worries at the time before and just after the op, was having these alien things strapped to my chest. It took a while for me to feel comfortable and I definitely needed to grieve the loss of my breasts. 

I chose to have a chest piece tattoo once my scars had healed enough. This for me was my marker of taking my body back and as soon as this was done 18months after the op, that was my turning point.

Hope you're doing OK, please feel free to ask me any questions.

Virtual Hugs x

Hi, I have only recently  just joined this forum. I found out in November that I have been tested positive with the BRACA1 gene. I’m 44 and don’t have cancer but the consultants are moving very quickly with surgery for me. I will get to keep my nipples. I am having both the surgeries your having, however think things will be delayed due to covid. 

I am finding the who thing is overwhelming too. My sister is 41 and has triple negative breast cancer and my mum had ovarian stage3 at 46. 
I don’t feel I have any other options than having the surgery as I would rather be in control of the situation than risk getting cancer. 
Good luck x

iam 42: my mum had ovarian cancer at 54, passed away a year and half later. .my younger sister had stage 3 breast cancer diagnosed at 36.  

i  tested for BRCA1 positive last Oct,.i had one phone consulation only with  my nhs genetic counseller in Dec. they did not push me for any surgeries. 

so it  seems that different areas have different approach to it.

i am still undecided on what to do next. 

i wanted to go for removal  of ovaries only and have annual breast screenings, as i think  ovarian cancer is more of a silent killer, not easy to detect, differnt with breast cancer, and with the researches advances , hopefully new treatment would be available sooon.and i dont like the idea of major surgery that takes months to recover.

i had my first MRI and mamogramm just yesterday. 

on the back of  my mind, i still hoped that i would be lucky to have the odds of not develope cancer with BRCA1. and not sure how pre…manepause would affect my body , therefore have not.gone for ovary removal surgery yet.

it brings a little comfort to read other people experience here.

Good luck to you all.