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Has anyone had a positive experience....

17 REPLIES 17

Re: Has anyone had a positive experience....

Hi I've triple negative and I'm stress

Re: Has anyone had a positive experience....

Hi uwaga


To send a private message (PM) just click on the user name of the person you want to message. On the screen it gives click on the grey box that says 'Send a Message' then it will give you areas to complete for your message.


best wishes


June, moderator

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Re: Has anyone had a positive experience....

Hi again
I'm glad you've had some positive responses here - it really helped me to hear from people on the other side.
I'm now 7 weeks out from surgery and feeling really good. I just wanted to say that I would be more than happy to send you some pictures of my reconstruction if it would help. I know there are plenty online but prior to my surgery I really benefited from contact with someone who had already been through the surgery - reading her words and seeing her pics really helped me to get my head round the whole thing.
I tried to send you a message but I couldn't work out how to do it . If you would like to see some pics (and you're more tech savvy than me!), message me your email address and I'd be happy to oblige.
All the best
Emma
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Re: Has anyone had a positive experience....

Hi Lulu34,

Thank you for the information - I actually haven't come across either sites so that will be very useful. Yes strattice is the plan - you're spot on.
I really wish there isn't a 4th bc for you and well done for surviving the 3 to date - women like you and my Mum should be hailed as hero's in my view.

All the best,

Mema
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Re: Has anyone had a positive experience....

Hi Rattles,

Thank you for getting in touch. I hope you are doing ok now and feeling well - I really appreciate you taking the time to message. I would love to chat to her.
Wishing you continued relief and health.
Love,
Mema
xxx
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Re: Has anyone had a positive experience....

Hi Uwaga,

Your message means so much to me as you are almost identical to me although I am 2yrs younger and not as slim 🙂 I plan to have nipple saving and strattice and am so pleased to hear some positive feedback. It feels the right decision but doctors always seem to lead you to believe it will be very strightforward when in reality it isn't.
I am very happy that you are recovering well and that it has made you feel lifted from the the dark place. You must be very brave and you have insprired me as have all the women I have chatted to so far.
Thank you so so so much for your message - I want to go into this with a positive mindset as I believe that has an important role to play in recovery. My surgery should be within 6 months and I hope I remain in a similar position to yourself. Thank you.

Take care,
Mema
xxx

Re: Has anyone had a positive experience....

Hi Mema

i have BRCA2 had BC 3 times but not had mastectomy... although its still a possibility.

if your on facebook you can search for the BRCA sisterhood which is full of good advice, and as somebody else mention brca unbrella.... they also have excellent before and after pictures of the actual group members.

the surgergy sounds like they will be using strattice or permacol which are both pig tissue.... good luck

Re: Has anyone had a positive experience....

Hello Mema,
I have a complicated history as have had b/c x2 and although I have had mastecomies, I had alot of complications due to radiation damage. But, I have brca1 mutation and a relative has just said she plans to have mastecomies. I am sure she would love to pm you if you are up for it? Let me know.
Anyway, even though so many things went wrong for me and I am not happy with results, its such a massive relief not to be living with the risk of a new breast cancer, or the possibility of surgery.
Good luck Rattles x

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Re: Has anyone had a positive experience....

Hi Ems
I'm 36 and BRCA2+. I had a prophylactic mastectomy using strattice (pig skin) and implants just five weeks ago.
Although the lead up to the surgery was stressful and the early days of recovery not a lot of fun, I can honestly say I have no regrets. I feel as though I have come out from under a huge dark cloud - I had no idea how burdened I had been by this until it was all over.
Physically I'm almost back to normal now. There's a bit of tightness across my chest and I find it difficult to get comfortable at night but it's really early days and I am getting better every day. The numbness is a bit strange. I have some skin sensation on the left but none on the right - when I touch myself there it feels like I'm wearing a very padded bra. I'm told that some sensation may return but I'm prepared for it not to.
I'm also pretty happy with how the recon looks. I had nipple sparing surgery so I still look like me, just a bit bigger and perkier! My chest looks great in clothes and not too bad naked, certainly nothing like my worst fears. I'm quite thin so my surgeon plans to do some fat grafting in the summer to help cover the implant a bit better and give me a more natural look and feel. I think if that works as planned, the fake boobs will look better than the real ones ever did!
You may already know about it but I found the BRCA Umbrella a great resource - lots of pictures and shared experiences of different types of reconstructions.
Do let me know if there's anything else you want to know. Best of luck!
Emma
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Re: Has anyone had a positive experience....

Hi Carabel,

I hope it goes briliantly for you and has a positive effect on your current history. Thank you for taking the time and effort to message me, If I can ever be of help to you please ask.

Mema
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Re: Has anyone had a positive experience....

Thank you Di - I am privaleged to have your input.

xxxx

Re: Has anyone had a positive experience....

Hi mema.
I am about to embark on risk reducing double mx following a bc diagnosis last january. Already had wle x2 last year followed by chemo and rads. Decision is based on strong family history (but not brca 1 or 2) and is fully supported by my breast surgeon.
Wishing you lots of luck

Carabel x

Re: Has anyone had a positive experience....

Your welcome Mema,
I can understand your mums concern,its a major op and I know I was worried sick on the day of my daughters surgery,then there's the recovery time too,so I wish you and your mum well in the future and good luck with your op,let us know how it goes,
Best wishes,Di.x

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Re: Has anyone had a positive experience....

Hi Di,
Thank you for your message and I have found yours and your daughters journey really encouraging and hopeful. My Mum had a double mx after various bc's and recon some time later but has had reoccuring bc's since and therefore is not so much in favour of me chosing this route. We're all so different in our bodie's and the bc's we suffer from but I am very pleased to hear some positive experiences.

Thanks again,
Mema

Re: Has anyone had a positive experience....

Hi Mema,I tested positive for brca 1 but this was after being diagnosed with bc.I had double mx with immediate recon and am happy with results.My 28 yr old daughter also tested positive for brca1 and in july of 2011 she had double mx with tramflap recon,She too is happy with results,she had 4 mths off work and is now living a normal life free from the worry,well almost free,of being diagnosed with bc.In fact my eldest daughter who tested negative has more chance of developing bc than my youngest does now she has had the surgery.When she is 35 she will also have her ovaries removed,Hope this has helped in some way,best of luck.x
Di.x

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Re: Has anyone had a positive experience....

Thank you Tracy - very helpful and I will be sure to look them up. Thakn you for taking the time to reply and I hope you have a great weekend.
xxx

Re: Has anyone had a positive experience....

Hello Ems,
I am not in your position but I am from Derbyshire and I know that Helen Watson set up the Heriditary Breast Cancer Helpline and has just been awarded an MBE. She had her double mx more than 20 years ago and set up this helpline very early on to help other ladies like yourself make this difficult decision. Her daughter Becky Measures who is a radio presenter in Chesterfield also had the double mx, so I think it would be well worth a visit to the website and give them a call. I hope this helps you and they can give you guidance. Love and hugs Tracy xxx
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Has anyone had a positive experience....

Hello Wonderful Women,
I have just agreed to have risk reducing double mastectomy with implant and pig skin (although they call it something different) reconstruction. None of my own tissue will be used for the reconstruction just implants and the skin.
I have had no cancers yet and am 34, my mother was 32 and her mother was 30 when they were first diagnosed with breast cancer. My mother has been identified with BRCA1 as have I.
I live in Wales (recently moved here) and was wondering whether there were any amazing women out there that have been in the boat I am about to sail upon?
Many thanks,

Ems