mastectomy /which type reconstructive surgery

Hello there, new to this site, so apologies for errors,
I have BR CA 1 fault, got the result in April, made decision last week for ovary and fallopian removal in October.Saw cons last week re preventative breast surgery, he talked about flap surgery, taking tissue from my back to get better results but that I could just have implants straight in but would’nt look as natural,Im waiting to see the BC nurse for more advice but I would really appreciate any ones advice on what surgery they’ve had and their experience. The idea of having wounds on my back puts me off. I’ve not decided yet whether to have a mastectomy…my minds all over the place …help.

Hi NikNak and welcome to the forums,

I am posting a link to a BCC publication about breast reconstruction which you may find helpful to read, you can read it via the following link:

breastcancercare.org.uk/docs/breast_reconstruction_dec06_web_0.pdf

You are also welcome to call our confidential helpline if you need any further support and information on 0808 800 6000, it’s open Mon-Fri 9am-5pm and Sat 9am-2pm.

Best wishes
Lucy

Hi NikNak,

I also have the BRCA1 gene and four weeks ago had a bilateral mastectomy and reconstruction using expanders which are gradually expanded and then swapped for permanent implants a few months later. This route was decided as I am quite slim and would have struggled finding spare skin etc (their words) for any other type of surgery. So far I am very pleased with the results. I opted to keep my nipples and so have very minimal scarring as they just cut three quarters around the nipple and sort of “scooped” everything out. I think it also depends on your bust size and what you would want to achieve at the end. As I was quite small on top as well I will probably end up larger than I was. I think you are doing right to speak to your BC nurse about all the options available.

Hope this helps with your decision.

Take care.

Cathy

Thanks for the link Lucy.

Cathy I feel better all ready for telling me your op etc. I dont know why the doc didnt mention tissue expanders …perhaps cos I said I wasnt bothered about going any bigger?? I am only small too( B cup ) he said they may not look natural,but I really dont want the flap surgery. I dont mind going a little bigger I suppose, does it give them a more natural look if they expand the skin 1st then ???. Its all a bit mind blowing at first isnt it. How did you feel after your op ?? I just know its the right thing to do but then a bit of panic sets in… waking up and seeing they’ve gone ???
Do you mind me asking …have you had the gynae op too… you can tell me to mind my own .!

Best wishes

Rach

Hi Rach,

I don’t mind answering any of your questions at all. Will give you a potted history -

Found out I had the BRCA1 gene 3 years ago. I immediately asked for a referral for a full hysterectomy as I have 4 kids so know I dont want any more and the reduction in hormones meant less chance of developing BC while I thought about what I wanted to do. I had the operation 6 months later (nearly 2 years ago now). Havent had any HRT or anything so its been full on hot flushes but they have died down a little and I have pretty much got used to it.

After my yearly check up last year I asked for a referral to have my boobs “done” which took a while to get it all sorted.

Firstly, with the type of surgery I had you have to decide whether you want to keep your nipples or not, I did opt to keep mine but bear in mind that there is still a bit of a risk as they have to leave a small amount of breast tissue behind to keep the blood supply to the nipple, that said they explained it to me that if anything did happen or develop I would feel it straight away a it is just below skin level. They make an incision (and different surgeons use different cuts and so scarring varies so if you ask about this option ask how they will cut you and what scarring you will have) and take out all of your breast tissue. They then lift the muscle away from your rib cage and put the expanders behind your muscle so that the muscle can hold them in place. They will put some fluid in at the time of the operation so you are not completely flat when you wake up. I was very lucky as I only have a scar around the nipple and I only had 2 drains in when I woke up. I had the operation on the Monday and was home on the Thursday,

You then attend out patient appointments over the next few months to be “inflated” which stretches the muscle to create a pocket for the permanent implant. The expanders are quite wide and do feel like they are a bit under your arms which takes a bit of getting used to. I think I will be having my first expansion on 9 Sept at my next check up. When they have got you as big as you want they do one last final “over” expansion to make sure there is plenty of room for the implant and to have enough skin to create a bit of a droop to try and get a more natural shape.

As far as I understand it there are a couple of types of permanent implants that you can choose from, there are the round ones which look more like you’ve had a boob job (i.e. rounder) and there are tear drop shaped ones which are supposed to look more normal. I will think about that a bit more when I am further down the line.

I have had a few times when I’ve had a few tears since the operation but it’s all pretty normal from what other girls have told me.

Hmmm, thats quite long sorry for waffling, but if you need any further information or want to chat I really don’t mind.

Which hospital are you at??

Speak soon.

Cathy xx

Hello Cathy

Oh your so NOT waffling , you dont know how much your words have helped already…

I feel a bit better informed now as to what to ask the breast nurse, the cons did mention what scarring would be but to be honest i’d switched off by this point !!

I know surgery is the best option and its what i’ve gotta do… I want to be here to see my 2 kids grow up. You mention you had full hysterectomy,Im only having fallopians and ovaries, although my mum also had womb cancer ( as well as BC )…might just ask him to take the lot,

Im certainly going to ask the PS re tissue expanders esp if they do give a more natural look. I also want to keep my nipples so may prob have surgery similar to yours… so how are you then ?? Apart from the tears…( which is understandable and I can tell you I’ve shed a few already and even more since finding this site and reading all the stories on here… so many brave women out there )
Its 4week since your op ?.. are you ok ?..how is your hubby/family with it all … how have your kids been ?? How long are you having off work ??
…sorry perhaps too many questions .

surgery will be at Hallamshire hosp…Sheffield

Its really great to have someone to chat with , thanx sooo much for your advice and sharing your experience with me!!

speak soon,

Rach xx

Take care

Hi Rach,

I’ve been ok, a few tears over silly things that wouldn’t normally bother me. Yes it’s just over 4 weeks since the op and am starting to do a bit more round the house. I’m not really in pain any more just uncomfortable as the expander is under the muscle stretching it but it’s getting better every day, just have to remember to do the physio exercises they give you afterwards. The family have been great, hubby was a bit unsure at first but that’s just his insecurities, he thinks if I end up with bigger boobs I’ll have every tom, dick and harry after me lol. The kids are ok and understand why I’ve done it, they are 17, 14, 13 and 12 so are big enough to help with stuff around the house. I am signed off work for another 3 weeks at the moment but will be going back for another one for about another 2 weeks cause my next appointment, and hopefully my first expansion, is just after this one runs out and I’m not sure how sore I will be after it. I’ve been told by other girls I’ve spoken to on another site that it’s more uncomfortable than painful so will wait and see. It would be great if you could join the other site I go on but I can’t post it on here cause the moderators will remove it, will ask for advice on how to point you in the direction as I know they have done it with others.

I had a full hysterectomy as I couldnt see the point in keeping just part of it and maybe something happening further down the line.

Will come back to post on the other site. Have you read any of the posts in the Family history bit, that was where I found the route to the other site but not sure if it will still be there.

Speak soon.

Cathy xx

Rach,

Pop into the private messages I have left a message for you there with a link to follow.

Let me know if you can’t get it for some reason and I will try and think of another way to get it to you.

Take care.

Cathy xx

Hi,
I’m just recovering bc surgery(full mastectomy) and feeling a bit concerned as you all seem to be talking about reconstruction, keeping your nipples etc… i wasn’t told any of this and as my only good nipple was on the other side(as my other one is inverted, always has been) i would of like to have kept it and swaped them over, I’m still not sure about reconstruction but if not i was going to ask the doctor if it would be possible to correct my other nipple, Any help from anyone?

Now, I do return to see theDoctor next week for my results, Chemo etc, But just had a though my tumour was underneath my bust and the second one was found just above my nipple, Maybe thats why they never offered it to me?

hi cathy glad to read your comments about expanders. PS decided that it would give more volume to my recon breast to use expander initially but made decision on the table so still unsure as to what to expect with re inflation etc as not discussed pre op. Had LD flap recon and leftMX 6 weeks ago but wound not fully healed on front of breast. I had DCIS which was high grade and opted for immed recon and dont need any rads or chemo.not sure if I will or wont get nipple recon as my initial surgery wasnt as straight forward as i thought it was going to be and will prob need a reduction on right for symmetry so still a long way to go before this.at least I know what to ask PS when i see him as it seems sometines they can leave the expander in and remove the port and tubing or sometimes they replace it with a permanent implant.which route are you taking or dont you now yet???
i had my surgery at RoyalFree in london where was your op?
Doreen

I had a mastectomy last october and an expander fitted I which they removed along with the port in January when I had the perm implant in as I also had WLE in the remaining breast at the sane time as Mastectomy I was given an uplift at the same timeto match them up …I have no nipple on the mastectomy side …and am due to have a prostethic one with few to a permanent one …but I have decided against it My boobs have only begun to feel normal very recently ,they felt huge although they are the same size as before BC ,They were very tight …they are not Identical but I can ;live with it…in my bra you would never tell and it is certainly better than nothing at all …there is a lot of pain and discomfort moreso v from the saline injection to stretch the skin but you do get used to it …I think that if I wasnt given the option for ommediate recon .i may have thought twice …i originlly chose the Tram flap but was too slim for any of the ops that use your own tissue

It has been a long 10 months but things ae looking better …hope you are all ok on this leg of your journey xxxxxx
Maz

Hi.
I had originally a mastectomy, and later a bilateral, with implants. Didin’t need even to have expanders - I have to say that my surgeons were amazing. No nipple (anyway, the right was already off,), but now I have a little smaller than earlier (now a 36D, down from DD), perky and quite natural-feeling breasts. The scars are quite obvious, but I had the op done only 2 months ago, so it is still fading.

Best thing I could decide: no more reconstruction for me is a great though, no other scarring, no exchange. I have silicone implants.

Hi Rach

I am 40 and I have had double mastectomy and recon using the back muscle method and silicone implants(1st done in January and 2nd in June) due to strong family history. It has to be the toughest decision I have ever had to make so I can sympathise with you fully.

Regarding scarring it is quite extensive, 2 six inch scars accross my back and because I had my nipples removed I also have 2 circular scars where they used to be. The scars are virtually hidden when wearing a bra and my new breasts look quite natural. I am due to see my surgeon in October regarding nipple recon, but I may not bother. I am currently contemplating removal of ovaries but may wait til next year for that. I have had 12 weeks off work after each operation, but I do have a quite physical job. It is 9 weeks since my op and I feel back to normal and just building up my strength and fitness again.

Good luck in your decision and please post any specific questions you may have.

Jackie.