Hi Everyone,
I’m completely new to this site and have so far found all of your stories so inspiring I haven’t really met anyone else thats going through what I am so its reassuring to finally speak to people that can understand.
I’m 26 years old and in March this year I found out that I had the BRCA1 mutation. My mum was diagnosed with breast cancer at 31 and died aged 32 when I was 4 years old. Since then my oldest sister was diagnosed 2 years ago at the age of 31 as well. She is now doing really well and has since had a baby boy!! I also have another sister and all three of us have the BRCA1 mutation.
I am due to go into hospital ready for surgery on 7th November for a double mastectomy and reconstruction. I have had to go with the LD flap with implants because there wasn’t enough tissue on my stomach to do the Tram flap.
If anyone has been through this same surgery or can give me any advice on this then I would really appreciate it. At the moment I am absolutely petrified of whats going to happen and how I’m going to look and feel afterwards.
Welcome to the forums. Whilst you await support and information from your fellow forum members we have publsihed a booklet about breast reconstruction which you may find helpful to read, you can do so via the following link:
I am 6 weeks post op, I am 29 hve the BRACA1 mutation gene, Had prophylactic mastectomy on 12th Sept… Had operation done for similar reasons to you. I don’t have experience with the LD flap or tram flap, at present, as i am on waiting list for reconstruction. My surgeon advised me against having recon straight away, due to her experience of the last 6 people they operated on… All had various complications (not same surgeons did ops) most common was infection, and having to go back into surgery to have them taken out.
I feel I made right choice, as I did have an infection 2 weeks after operation and it has only now cleared up. I have had a lot of build up of fluid also, which has had to be aspirated every week. I believe I am finally turning the corner, and starting things are starting to look brighter.
All I can say is Good luck with the operation, If you want any other questions, chat etc am happy to chat of my experiences, and what things you may want to take into hospital. feel frree to private message me too.
Thanks so much for your response. Had appointment on Monday with the breast surgeon. This was the first time that I had met him because I was originally at a different hospital seeing a different consultant and to be honest I came out of there quite deflated. He talked alot about complications and risks, I know they have to do this but no-one that I’ve seen before has been so blunt. He didnt really provide me with any reassurance that I was doing the right thing.
I do really worry about infection though and the build up of fluid. How long were you in hospital for and do you mind me asking which hospital?
Its my last day at work tomorrow and I dont really know when to expect to be back - how are you feeling now after 6 weeks?
With any operation there is a risk of infection… Although I didnt pick up an infection in hospital, it was a few days after being at home that I thought i had an infection… Although District nurse told me it was just taking a little longer to heal and not infected.
I have had a nasty infection, it took 1 wks strong anti-biotics to clear…
I were in a hospital is South Wales… The same hospital that pioneered to LD reconstruction, back in 197?.
I had a fantastic Breast nurse consultant/team and surgeons.
I am feeling a lot better after the infection, am able to go out more, although it is exhasuting, al i cn suggest is listen to your body, as it is major surgery. I am a little frustrated that i am not able to do the things i were doing before the operation.
I still have fluid now, although after a few aspirated procedures, they are now hoping that the body will reabsorb it.
I have had a few other stresses on top of the surgery, personal issues going on… A close friend/ex boyfriend died 2 weeks afeter my operation, were unable to say my goodbyes at his funeral. 2yrs yesterday my mum passed away to cancer.
So it has taken me a little longer to get up and about, and do things for myself, driving you wil need to check with your surgeon and driving insurance.
When do you have your surgery, and where about in the UK are you?
Hi All
I had a LD reconstruction in June this year. I was in hospital for 9 days as the fluid kept coming and coming but in the end they had to take the 5 drains out for fear of infection. the consequence of this was that I had a hot water bottle sized fluid on my back and a little of it is still there nearly 5 months on and uncomfortable. I have only seen my surgeon once since my op and that was 2 weeks after and he wouldn’t drain it. I asked the BC nurse at abut 8 weeks post op and she said that because I had started chemo they wouldn’t drain it, unless it was hard, as I was then on chemo. So I am left with this band of fluid from my back coming round to my side.
With regard to the reconstruction - I have found this more uncomfortable rather than painful. I had no advice of how it would feel and that it would still think it was in my back and therefore if you sneeze or cough it jumps ! You just have to hold on to it. I am told though that this does go - but when? My back is numb where they took the muscle from and the muscle still goes into spasm under my arm and you feel like there is a big boulder there. Having said all that - I would have it done again as the outcome is good.
It all still feels tight but I also think that with each chemo this affects it as it seems to get more uncomfortable.
I watched my sister die age 35 of breast cancer end of march this year, 2 months later got married and then 6 weeks ago discovered I like my sister am a brac1 carrier. The Nurse and Surgeon recommended surgery before I start my family and they want to remove my ovaries by 40. What an insane 7 months!
I am in the process of booking a bilateral mastectomy, tissue expanders and then permanent impants. NHS can offer me 24th dec! or 31st dec ( which i hope to take) or I am considering going private. I can’t believe PPP won’t cover me for preventative surgery! It may cost up to £13,000!!
I have hardly grieved since my sister died as I had a big wedding to plan on my own and I think all the stress and grief is only just hitting me.
I am worried about the NHS cancelling my surgery if a more urgent patient comes in. It can be cancelled for up to 15 weeks. I can’t wait to get this all over and done with and move on with my life!! I really don’t want all this to go on to the summer.
The only good thing to come out of all this is that my boobs will be bigger as I am a tiny 32b!!
My experience of the NHS is a positive one. I had 11th september date, and i worried that it would be cancelled. But thankfully they had a bed, although i had to wait several hours in day room for the bed to become available… they had to transfer a few patients to another ward, to admit breast surgery patients to the breast care ward.
I had to stay in hospital for 11 days, and they were very good. Very caring, helpful, supportive and understanding. I cannot say a bd word about the care i recieved.