I've just been diagnosed with the BRCA 1 gene. With two small children to be ok for, I'm desperate to get these boobs off! I'd like to have a skin saving mastectomy with immediate reconstruction. I understand it's a good idea to do your research and you can ask for a referral to any surgeon. I just don't know where to start in doing any research into who would be the best. Any advice would be so welcome especially from personal experience.Â
Thanks so much in advance from a very worried mummy xÂ
Hi
I cant give recommendations myself as just started looking into this but apart from surgeon you need to see plastic surgeon too.
You also need to have a proper consultation with breast nurse who will give you a lot of initial information and even a dvd to watch.
I was told East Grinstead hospital has pioneered plastic surgery for facial reconstruction so they have a lot of history and i was refered to plastic surgeon who operates there. They have a big web page for breast surgeries too.Â
London isn't always the best place you know, Â even privately.Â
I hope it helps a bit
Hi Yellowy
Thanks for your story - you'd have been well within your rights to tell me to bog off! Having been through chemo and radiotherapy I'm 100% with your "no thank you". I wouldn't wish it on my worst enemy. I hope you can find the right surgeon for you. And that your BRCA test is negative. If not, well, you know where we are.Â
Xxx
Daloni,
I would never tell you to bog off...I just think I needed to explain it more clearly so that perhaps people could see where I was coming from...
Thank you for your kind response,
M
Hi GandTgirl
You are very welcome to come back with further questions.Â
Best of luck
Nicole
Hi Marisa
I do understand all the points you raised and have been through a similar path of experience and reasoning.Â
My mother died of ovarian cancer in 2012 and I felt really scared at the thought I might inherit the illness. I never had doubts and I was very determined to have a double mastectomy and hysterectomy if that would prove to be the case.Â
I asked my GP for genetic testing in 2014 and it was very difficult to get the referral. I had to literally put pressure on them to send the referral and sadly the genetic counsellor that saw me concluded I did not have enough deaths in the family therefore I was not eligible to be tested.Â
I ment to complain to NHS then I thought of saving money to get the test done in privte and eventually I got caught in work and other prioritises and 2 years later I was diagnosed with breast cancer.Â
This time they have done the genetic testing which came out positive but it was too late, I was already in chemotherapy - and God that was hard - then I had the surgery and I am due to have another one to do a hysterectomy.Â
I wish I could avoid all the suffering and the money spent on my treatment but here we are stuck with NICE Â policies and various NHS Trusts rules.Â
If I have one regret is that I did not do the test in private at the time, Â to have the surgeries done and never have cancer so I connect with your story and your plans completely.Â
I hope everything goes well for you and you act in time to prevent any unfortunate circumstances.Â
Do get in touch if you need anything.Â
Best wishes
Nicole
Hi Nicole,Â
That's so awful. To think all that could have been avoided. I have a friend who's going private with her BRCA testing. She's an only child of an only child so it's literally impossible for her to reach the 10% NICE risk threshold.
Good luck with your next operationÂ
Lots of love xxx
Hi ladies, this is my first post...I figured this was a good thread to seek your wisdom! Â I'm BRCA1, age 49 and living in Abu Dhabi in the United Arab Emirates. Â I had a BSO here last year which went well, but I've been advised to look at having a mastectomy/reconstruction in the U.K. as there isn't the same level of expertise here. Â
I'm blessed to have very good private health insurance so I can choose where to have surgery..so if you had the choice, where would you go? Â I want to find someone who is at the top of their game as I'm am totally freaked about this surgery (whereas I was fairly ok about the BSO). Â
I would be able to recover in Hampshire/Basingstoke...but happy to travel anywhere for the best surgery! Â Grateful for recommendations. Â
Thanks so much
Hi Nicole,
I've just been referred to meet Mr Hamed this Friday and was pleased to read that you would recommend him. I've found surgeons to be a little bit hit or miss in the past (not always famous for their social skills..). Did you meet any others before deciding to go ahead with Mr Hamed or were you just happy to proceed with him straight away?
Many thanks,
Emma
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