I’ve noticed a few people on this forum who have discovered they have inherited a BRCA1 or 2 gene mutation and I thought it may be useful to share my story if anyone is scared about undergoing a preventative mastectomy, especially if fit and healthy otherwise.
Of course, everyone is different and not everyone will choose to undergo surgery - annual mammograms and MRI scans can give some peace of mind to some. For me, when I discovered I was BRCA2 positive last year aged 35 that’s all I had in mind. Until the MRI scan showed 2 abnormal lumps. One was just a cyst and the other was a papilloma which was removed and turned out to be benign…but it made the 80% risk seem VERY real so I opted for risk reducing surgery which I just had done on 8th Nov. I’m now at home recovering and doing very well, just a bit sore and tight, but on the mend.
the thing that scared me most was the idea of having scars in my tummy or back to create my new boobs but my surgeon came up with the option of skin sparring bilatereal mx with implants and strattice. Being only a 34C this seemed like the least invasive option. they have lifted my pec muscle over the top part of the implant, and the lower part of the implant is held in place by the strattice (treated pig skin) which acts as an internal bra under my skin. I only have 2 small scars (about 2-3 inches long) across each breast where my nipples were removed. the shape is surprisingly lifelike and looks very similar to my boobs before. not painful, just a bit stretched and uncomfortable. Of course it’s still early days but I’m pretty happy with the result and relieved that my risk should now have reduced to 5-10%. After losing my mum and an aunt to BC, it was a no brainer. Having said that I was scared to death of the op, worried I was causing complications when I was otherwise healthy. It took me a year to commit, but I can say the fear I had before is much worse than seeing through the op.
my plan is now to take time to heal and try for a family later next year - something we planned to do this year but we put on hold as a result of the decision for mx (a very hard choice as I’m getting on a bit in terms of fertility) - before getting my ovaries removed when I’m about 40.
If anyone wants to know more about a strattice reconstruction, or how it feels to go through the journey, i’d be happy to help. I’d also be grateful to hear from anyone else who has had this op and can share how they are getting on post recovery - how much movement and strength have you got back? I’m worried about how my pecs being out of action right now may impact me long term, especially as I was so active before. shanks so much, Ruth xx
Thanks for posting ruth hope you are recovering well x
Hi Ruth. I’ve been advised to have a strattice with implant (I have BC) so your post was v helpful.
Could you let me know how the long the op was and how long you were in hospital? Thanks x
Hi T and Angie, I’m really sorry its taken me a while to reply. I haven’t been on here for a while. There was a bit of a lull in September while I was waiting to see my breast surgeon and to be honest I tried not to read too much. I had a bit of a tough time but have made the decision to have the double MX and recon so am back in the full flow of hospital appointments all over again. I think the breast surgery will be first for me as everything seems to be happening more quickly in that area. I have had a pelvic scan though so for now feel OK that nothing is going on in the ovary department to worry about. Its good to hear from you Angie, I hope you recovered well from the rt? I can understand how you feel Teresa, it is a very personal decision. I’m scared to death of what the reconstructed boobs will be like. However I had a mammogram and MRI on Monday and that every year until I’m 70 is my reality if I chose not yo have surgery…plus all the worry that comes with it and I know that I can’t live like that I a constant shadow (not to mention I would have to have rt on my right side if I don’t have surgery). Its been a really tough year but I know what I have to do. Do you have surgery dates yet t? Xxx
Hi Ruth, I’m in a similar position. Currently 3 weeks on from a bilateral Mastectomy with expanders. I have a BRCA2 mutation from my maternal side. My mum is BC survivor, but both her parents were taken too soon by this disease.
I’m currently in discomfort (bruised and a reccuring seroma) but nothing to what this would be like with the ‘big C’ also to be treated.
I’m grateful to all that have gone before me, to those that have given me the opportunity to prevent my getting cancer, to be able to say “I’m not high risk any more”.
At the moment I get tired easily and I can’t lift anything heavy, but I know thats just a ‘time’ thing…
Best wishes and speedy recovery!
Deb
Hi Ruth - new to this forum and just read your post . I am considering the double mx with the silicone and stratus as you had but am scared stiff of the thought of the operation as I have never had surgery before .
I have DCIS in left breast & small tumour 15mm in right & my surgeons say they can operate on both but I am concerned about local recurrence so Amy opt for an elective double mx which they are willing to perform .
I am hoping you can tell me whether the op was worst than you imagined or better , you had any regrets , happy with the outcome , missed your boobs and could live with the implants happily I.e could sleep okay with them ( I have heard hey are very hard & alien)
Any support or
Info you could give me would be very appreciated
Thanks Linda x
Hi
Im also have the questions , I have brac2 and dont know what to do, should I have them removed and implants. I would love to hear from someone whos been through this.
June
Hi
How are you now down the line after a few years.
June
Hey… if anyone is still using this… I am 20 years old and my BRCA 2 gene is being tested right now. I’m trying to decide if I want to know if I carry the gene. I know it sounds strange but I really think I have it, maybe that’s stupid or just a weird feeling because I’m worrying. I’m so young, and I just don’t know if I’m ready, especially if it comes back positive
Hi Ruth, this post it very inspiring! I have recently found out I have the BRCA2 gene and am considering risk reducing surgery. I am in my early twenties and am very conscious of how my boobs will look after. Is there serveral risk reducing options to choose from ? Xx
Hi, thank you for letting us know your story. It was a bit scary but I think this type of can be treated as seen in the television or internet of their confession. I just have my concern in breast, I can a little pain in breast sometimes in a day but when I checked them I see any lumps and it’s seems like very fine. Well, I don’t wan’t to bother myself about BC but it worries me. What do you think is the first step does the doctor will do? any laboratory test? I am certainly scared of needles. Thank you!
Hi everyone
i am 48 and six weeks ago had risk reducing double mastectomies nipple and skin sparing with diep flaps reconstruction.
i only wanted to use my own natural tissue and wanted a solution that was not going to need repeating in the future.
it is a daunting thing to do from expierience but I am very happy with my decision.
i hope you all have good outcomes
x
Look on Brca umbrella there are groups all over U.K.
I am in the Yorkshire group.
Or ring someone like me .
The groups are very supportive.
Hope this helps . Keep in touch .
Hi, I’m on the waiting list at the mo for double mastectomy with bil abdo flap , would you mind sharing your experience
I’m just really anxious about the whole waiting time and getting notice … did u get a date well in advance ? I’m dreading a letter or call with a 2 week or so window , as I have a lot of prep to arrange before surgery
Any advice you can share
Hope you doing well
X
Just had my confirmation that I have faulty BRCA2 gene after 20 plus years of fighting to get answers. My mum had Breast and ovarian cancer and sadly died of ovarian cancer 21 years ago aged 59. Always been adomant that I want a double mastectomy and have my ovaries removed. Been told will have to wait another 6 months before I can be put forward for surgery. What are people’s thoughts on double mastectomy with or without reconstruction? All advise very welcomed
Hi Clare
My mother died of ovarian cancer at 58 in 1983, so I was always aware I might get ovarian cancer . I had mine removed in 2011 when I was 53. Before all the awareness Bcra genes. I thought I was then safe.
After I was tested in 2016 and had brac 2 my daughter wanted to be tested and she carried the faulty gene too. She had a double mastectomy last October and she’s recovered very well her breasts look normal with the implants she had straight away.
She is 33 with a daughter of her own , which worries me incase she’s inherited too.
I put off having the operation due to waiting for a prolapse op.
I’m seeing the consultant beginning of February and think I will have a double mastectomy as well. It’s easier than having to have treatment and the operation if you do later get cancer.
I don’t know how old you are and your area but keep in touch , my daughter only waited 6 weeks in easy yorkshire.
Hi Clare
Let me know how you get on with genetics consultant and Brest consultant.
I will let you know what happens at my next appointment with my consultant.
I think you both lost our mothers young and like you say we don’t want to go through it too.
Are you married with children what do they think regarding the Bcra and do they have comments .
What health authority are you under.
Take care
J
Hi Clare
I had my appointment 7 Feb but was so upset as the consultant now wants to refer me to a family history person , I asked why I wasn’t this done 18 months ago. The consultant female as tried to put me off surgery since last March 2017 when I changed consultant from a male due to my husband.
She told me that due to being 34g she would have to do a breast reduction then a 1 year later to a reconstruction using implants . Why wasn’t this mentioned last year .
That upset me so much .
I’m so pleased that you have an appointment 23 to see someone. how old are you ?
The consultant is also saying she thinks with me being 59 and having had my ovaries removed 2011 that I’m nearly in the National average to get Breast cancer . My head is in a spin J x
I’m hoping for some help to sort out my spinning head!
I recently had Breast reduction surgery and the tissue test revealed I have atypical ducal hyperplasia. As I I have a high risk of breast cancer I have been advised to have a double masectomy. Having just gone through breast surgery it’s a pretty traumatic thought having to face it all again.
Part of me thinks I should just get rid. I always hated them and despite a 6 size reduction I’m still a D cup! Another part of me thinks having had boobs how would I cope without? Also is my chest going to be a mass of scars?
Then there’s the tissue issue. I don’t want implants as I’m concerned it will prevent detection if any tissue is left behind and I develop cancer but the option of using my own tissue means that recovery is longer and I might lose muscle strength. I’m active and happy to work at regaining it but don’t want to compromise future activity.
I’d rather get whatever I have over and done with in one go rather than consider yet more surgery in the future.
I just keep talking myself around in circles…
Had my appt today. My surgeon refused to do the surgery as she does not do laperoscopic surgery and refused to do full surgery on me due to my weight. Have to be referred to another surgery so another wait. She told me I need to lose weight more vigorously even tho use I’ve lost 1.5 stone since jan. I was fuming Let’s hope the new surgeon has a better bedside manner !!!