l-d reconstruction due to BRCA1 gene

l-d reconstruction due to BRCA1 gene

l-d reconstruction due to BRCA1 gene Hi, I would like to share my experiences and find others im my situation as I have never come across anyone who is, although I know you are out there.
I have just had a prophylatic mastectomy with an immediate L-D reconstruction. I have had this done as I carry the BRAC1 gene, but I have not had breast cancer.
I am 30 years old. I actually waited till I ‘d finished breast feeeding my baby before I could do this, as a consequence I breast fed as long as possible to put the operation off!
I think I have made the right choice to have such a big operation done. It has taken about two years of research and planning! A lot of my family have had breast cancer and my moms’ is now serious and advanced. A lot of relatives were getting it in their 30s.
I feel much more in control than if I’d opted for just screening as with screening they only find it once you’ve got it usually. Who on earth wants to keep two breasts waitnig to turn cancerous?!
So far I’ve only had one side done as I choose to have l-d reconstruction and they can only do one side at a time. The reasons I choose l-d are it seemed less complicated surgery and I might want another baby one day and this might not be so easy after a tram.
I am pleased with the results so far. I only came out of hospital last Monday so I’m still sore and tight round my ribs and back. I felt sick and dizzy for a few days but other than that I’m on the mend.
I 've got to do it all again which isn’t nice. I found it very painfull indeed for a couple of days, but I 've read other posting from women who say this needent be the case. So I will be discussing better pain control with them for next time. That said it was bearable and I have no regrets.
I feel like the only one in the world in this situation though I can’t be, love to hear from anyone!

Hi Joolz Although our situations are a bit different, I just wanted to welcome you to forum and say hi.

I too carry the BRCA1 gene but unfortunately found out too late - after I’d been diagnosed with breast cancer at 35. I needed a mastectomy when I was diagnosed, but have since had a second preventative one, and had lat-dorsi reconstruction of both breasts in a single operation.

The soreness and tightness will definitely fade - make sure you do the exercises you were given by the hospital (if you weren’t given any, ask for some!). I wasn’t in too much pain after the operation, I was given Tramadol for pain relief as I can’t take asprin or ibuprofen.

My sister has never had breast cancer but had the genetic test - she gets her results next week. I also have 2 cousins who tested positive for BRCA1 and have both had prophylactic mastecomties and reconstruction (with implants only). They’ve also both had their ovaries removed because of the strong link between BRCA1 and ovarian cancer - I had mine out a few weeks ago too, on my consultant’s recommendation.

Keep posting to let us know how you’re getting on.

Best wishes

Hi ya Joolzc, I too had a preventative double mastectomy due to a strong family history of breast cancer, I did not have the genes test, although my sister had the test 4 months before she died, and was tested positive (although the results took 18 months) My Mum died with bc at 43, my eldest sister at 43 and my next sister at 49 my niece also had ovarian cancer when she was 23, so I thought that the best option for me was to have the preventative mastectomy which I did when I was 43 two and a half years ago and I can honestly say it was the best thing that I have ever done, no more constant worrying and checking. I did not have reconstruction at the time, but found that wearing the prostectics in the summer was very hot and heavy, so seven weeks ago I had reconstruction using becker implants, I am also planning on having my ovarys removed on my breast surgeons advise, I too can also honestly say I have no regrets, especially after seeing what my sisters went through (i cannot remember much about my Mum as I was only 9 when she died) I am going to see a genetic counsellor about having the genes test, more so now for the sake of my 3 daughters, who are 20, 17 and 15. I know for me it took a lot of soul searching, but have never regretted it for one minute.
Take Care
Smugergirl xxx

Hi Joolzc! Our current situations are quite similar! I carry the BRCA1 gene fault - found out a year ago - and decided that surgery was the way to go for me. (I did have breast cancer at 27 - 15 yrs ago and didn’t want to risk getting it again if it was possible not to.) Had ovaries removed last October and first mastectomy with lat dorsi reconstruction 5 weeks ago. My surgeon would not do both at once either so am back on the waiting list for the other side. I agree it’s not great to think of going back, but having said that, I didn’t find the op as bad as I had anticipated. Good idea to discuss pain relief for next time - I had one of those PCA things where you press the button when you need to for the first night, then paracetamol and anti-inflamatory tablets for about the next week or ten days - I did try tramedol but it made me feel very sick, so I gave that a miss.
How are you feeling now? Five weeks on for me and it still feels tight around my ribs especially in the morning, but I am persevering with the exercises so hopefully things will keep improving. Like you, I feel I have made the right decision and have had great support from family and friends. Also lots of useful adice from these message boards! Take care, Joanne x.

two weeks on Hi

Two weeks on from the ‘big’ op and I still feel sore. My left breast is more swollen than it was and swelling up under my armpit. My back still feels tight and sore. I have had nausea on and off since I left hospital.That said I am feeling a lot stronger physically and moving around with more ease now and have been reasured that all my symptoms are quite normal. The nurse who did my dressings yesterday said I was “healing up nicely”

Now I just want to set a date for the other side as I just want to get all the surgery over with.

I can’t believe how much I worried about having the surgery though and debated whether I was doing the right thing. I wouldn’t even have a genetic test for ages. Now I’ve started the process I am pleased with the results and feel strong like I am facing up to this BRCA1 gene and dealing with it.

I feel much more peace of mind now I have started this process. I wont have that constant fear about breast lumps and so many nightmares.

Next operation Well the time has finally arrived. Nine weeks on from the first op and tommorrow I go to have my right breast removed and reconstructed. Despite having been through it before I am still very nervous. Unfortunately I am a squeamish person and hate needles, drains, catheters, suppositories etc (all pleasures I had last time) but what can I do-that’s life!

I have recovered well from my first mastectomy and have been more and more active as the weeks have rolled by. Initially I couldn’t even lift my 18 month baby, but now I can swim, play tennis etc. It is still a bit uncomfortable when I shrug my shoulders and a bit tight on my back, but all bearable. My consultant will give me liposuction in a few months time to remove bulgy skin under my left arm when she reconstructs my new nipples.

I have been off work for ten weeks and my line manager has been down right unpleasant trying to make out I’m pulling a fast one, despite knowing what op I’ve had. But then again she is a bit strange anyway.

Will write more when I come out from hospital.I will be in for six days and the first three days I can’t leave the bed and I just dose up on my morphine from my P.C.A (patient controlled analgesia) for the pain. Then the last few days I can move more and more. It’s nearly all over- can’t wait!

Good luck Joolz Hi Joolz

Just wanted to wish you all the best for tomorrow. I hope you recover as well from this op as you have from your first - and glad to hear it’s all going so well for you.

I was in hospital last week for a tidy up after my own lat-dorsi (bilateral) and had nipple recon too. I get the dressing off tomorrow so finally the work that was done.

Even though I’ve been in and out of hospital for the last 18 months and this was my 5th admittance, I still got nervous last week so know exactly how you feel. I doesn’t get easier, but just think - this time next week you should be home again.

Sorry to hear about your line manager - funny - you’d think a woman would understand better than a man. Hope she doesn’t make things too hard for you when you get back to work.

Will be thinking of you tomorrow - let us know how it went when you’re back on your feet again.


Back home I’m back home now from hospital. It wasn’t half as painful as last time and I’m back a day early. I’m so glad it’ s all over. I now have very minimal breast cancer risk and can get on with my life.

Sue- thanks for wishing me well. Hospital admissions don’t get easier do they? All I’ve got left now is tidy up - nipple reconstruction and a bit of liposuction.

I think it’s the best thing I’ve ever done having these ops as I couldn’t live with the risks.

All the best Sue and everyone

Great news Hi Joolz

Really pleased to hear you’re back home and it all went well. It’s such a relief when the ops are over - and you’re now as low risk as you can be, so well done for getting through it!

Take it easy and get lots of rest - and hope you feel completely back to normal very soon.


Well done you! Hi Joolz

Well done - congratulations that it’s over (nipples and lipo aside!). You must be so relieved. Really glad it was somewhat easier than last time. Hospital stays can be horrible can’t they?

Hope you continue to recover well.