Desperately confuddled and need advise plse !

Hi all,
I am looking for some advice re my surgery.I had 32 JJ hoober doobers very healthy …until…
I was diagnosed in March,Grade 3 invasive ductal in left breast and lymph node involvement,it was misdiagnosed 6 months previously so i opted for neoadjuvent chemo. I complete my last chemo 27th october and i went to see the plastic surgeon yesterday for the first time to discuss my options.
From day one ive wanted a bi lateral with immediate recon,she is ok with this, she wants to do tram flap from my tummy, i asked for this also however shes saying i cant have implants aswell as i need radio therapy. My oncologist said that she wont know if i need radio until the lymph nodes are out,however she would recommend it as its like an extra insurance policy… so now im thinking maybe i shouldnt have the implants on top of my belly tissue just to get the rounder effect.
The plastic surgeon did nothing but try to put me off having a double mastectomy saying that there was no reason for me to have healthy breast off,i say well so was my other breast healthy, and i want them to look the same… she then pulled the last excuse out saying that my bmi is bad, made me feel like total shit ! ive put on over two stone in chemo weight,not my fault at all as i dont realy eat a lot its just im unable to move a lot either !
I feel so down as i had it all panned out an now they seem to of thrown spanners in the works and what i thought i was having done seems to have obstacles in the way…should i stick to my gut plan or listen to the experts and keep one and hope they match I dunno !!!
The plastic surgeon will have to take off half of each boob to get me to a double d / e size,i looked down and they looked tiny lol, i dont mind that bit to be honest.She said theres lots of skin and i will have to have a scar runniing across my boob which i didnt want i wanted the smile line underneath… am i being too fussy ??
Brains all over the place !!! my worst nightmare would be waking up with nothing there after having such large breasts for all my life.
Any help or advise from post surgery ladies will be tremendously useful.
thank you sharon xxxxxxx

Hi Sharon

I have some idea of how you feel and sorry you’re going through all this. I was a 38G and have had huge boobs all my life. I opted to have a double mastectomy for various reasons mainly because my original cancer was so difficult to detect (lobular). My situation was different and an immediate reconstruction wasn’t an option because I knew I was definitely going to have radiotherapy.

Although I was originally keen to have reconstructions I am probably not going to as I can’t face more surgery. I’ve opted to go for much smaller prostheses (B cup) and I feel happy with that. I suppose I was never that happy having such huge boobs in the first place.

It is unhelpful to say about your BMI when you’re going through all this - you’ve more than enough to deal with!

I am rather confused because you talk about having a mastectomy but then say the plastic surgeon will take half off that breast? What will it mean for you in terms of size if you have a double reconstruction without implants? Will radiotherapy to the area reconstructed without implants be okay?
There’s a lot to think about and maybe more info needed.

Elinda x

Hi Sharon

Poor you, I can see why your ‘all over the place’!

Don’t know if this helps but I had high grade widespread DCIS (10.2 cms) with 4 small areas which had started to turn invasive, hence having mastectomy in May. I had immediate recon done at the same time as mastectomy as, like yourself, could not face waking up with nothing there (I think if you have ‘enjoyed’ having breasts and especially if they are large, the psychological effects are greatly reduced with immediate recon (if done well!), ie, not having to ‘get over’ the loss of a breast in addition to all the other cr*p that you’re going through with the BC - why put yourself through that if you don’t have to?)

Anyway, digressing! what I wanted to say was that I had DIEP op (tram uses muscle as you know, DIEP uses fat and artery which is lifted from muscle, otherwise pretty similar ops). I only had mast + immediate recon on left hand side and can honestly say that my boobs (DD’s in my case but stil quite large), are pretty much even. I had ‘subcutaneous’ mastectomy (where they save as much breast skin as possible so the breast looks nearly normal after surgery even in a very low cut bra).

Good luck in getting the advice you need. Feel free to PM if you want any further details.

Good luck! Lots of love. Cathy x

Can’t comment on you situation, just wanted to say, don’t accept a TRAM unless a DIEP is impossible as you will sacrifice muscle unneccesarily.
Also, a DIEP needs more flesh so losing weight can be dodgy. I was a couple of stones overweight but my PS told me not to lose any just try to get toned up and fitter.

Thank you for your replies,the plastic surgeon wont do a diep, simply because she prefers the tram as she has always had a good success rate which she puts down to not having to disonnect the blood supply.Im not given an option here unfortunately,she did point out that i may have muscle trouble in my tummy indefinately afterwards.
They say i have lots of skin that will need removing from my breasts,which will cause scarring,i have an appointment 5th oct to go into details with the bc nurse,im hoping she can shed some light on it,i was so focussed now im all over the place.
I definately want them both off and have a matching set!! even if they are nipple less and numb :frowning:
Sharon xx

Hi Shaz …just wanted to say you must get all your options ,my case is a lot different to yours simply because I didnt have enough body fat I wanted the other breast to go ,they wouldnt let me ,no way end of ,I had an expander implant recon straight after mx …that failed miserably my body rejected it ,it looked like a bowling ball so out it came in March this year .I had an uplift to the right breast to try and match the mx side …it never did .I have had an LD FLAP in march this year which has got a lot of scarring particularly where they put the oval shaped bit on the front …I have yet to have a nipple…I still had to have an implant as well as my back muscle cos of my size and not having enough to spare …It still does not match but is better than it was ,got to have another op to the healthy breast next year to even it up and get me a nipple if I want it …I personally found the phsycological side harder to handle then the physical,pain surgery bit even ,my oh has never seen it !!! he cant handle it dressed I look fab !!!just dont get naked anymore haha …you must consider all your options and have what you feel is best for you I will never have what I had before bc my whole body shape has changed but at least I am still here …ps you can have a look at it any time yu want !!! pmsl Mazxxxx

Thanks maz,
Ive no doubt im not going to be railroaded into something,im lucky ive got a big kangaroo pouch they can work with ! She said its perfect ! LOL.Phsycologically i was ready,but not ready for all the obstacles shes threw at me,hopefully some light will be shed on it wen I speak to the breast care nurse,my boobs are too big to match up undoubtedbly ! xx

You need to do more research. You are entitled to the best reconstruction for you and if your surgeon can’t do it you have the right to be referred to a surgeon who can.

Hello folks,
They have halted my chemo and brought the op forward,will be having the double mastectomy with tramflap immediate recon in the next couple of weeks.Can anyone advise me what to take into hospital ? In the way of nightwear etc…

Hi Sharon

Wow, double recon using tram!!! I think you could use some advice from a fellow ‘double tram’ lady. I would be concerned about the effect this would have on stomach muscle. With the DIEP, I still couldn’t lie on belly until a few weeks ago (op in May). Couldn’t lift confidently for nearly 3 months and that was with the muscle not being too ‘tampered with’! As someone else wrote, you can get referral to someone who does the op you want. Having said that, I would’ve gone for TRAM if I wasn’t concerned about tummy muscle (my hobby is kayaking and I need to be able to lift a 16ft canoe and use tummy muscles all the time so TRAM was not for me), however, there are probably people out there who’ve had TRAMS and are doing fine as I understand they put a ‘cage’ (mesh) in the tummy to help prevent hernias etc & TRAM is not so complicated (microsurgery connecting artery etc).

As for what to take to hossy, I slept in hospital gowns (changed daily) because of drains leaking. Take money or visa card for TV (you won’t be getting out of bed for a few days but that wont be a bad thing!)

Oh blimey, I’m waffling on a bit. Whatever you do, I’m glad you’re getting sorted and wish you every bit of luck.