I was diagnosed with lobular cancer on 12 Dec and had an MRI on 31 Dec. Result of that showed another suspicious area and I had another biopsy on that last Friday. I get the result possibly at the end of this week, but probably next week. If that is negative I can have a lumpectomy but if it is a second area of cancer I will have to have a mastectomy and my surgeon has suggested an immediate reconstruction.
I have spent the last two days reading up on the various options and I’m confused.
LD flap is not an option as I knackered my shoulder in a skiing accident and it is still weak. I don’t want to weaken it any further. Not sure about TRAM flap as I do lots of exercise and i’m worried it will weaken abs and restrict me. I don’t have a belly so I’m not sure that there would be enough fat for a DEIP as I’m a 32E. HELP!
Anyone out there with relevant experience? I know it’s not confirmed I need mx, but fore warned is fore armed I think.
I had a lumpectomy and then a mastectomy due to extensive LCIS that didn’t show up on my MRI. I’m also 32E and had a double DIEP with a small implant to get it the right size. I’m very pleased with the result, and am now going to have preventative surgery on my “good” side and will be having an immediate recon using the IGAP method - basically my bottom! This may be an option for you, though I’m not sure that it’s done that often. I’m having my surgery at the Norfolk and Norwich hospital - where are you? You may be able to travel for this surgery if you really want it.
Thanks for that Sally. Read about IGAP, but I’ve got a flat backside too - never thought I’d regret not being fatter! I could suggest they took some from my sides, to give me the waist I’ve never had, but I don’t suppose that’s an option. Surgery at Worthing, unless I need a plastic surgeon, when I’d have to go to East Grinstead.
You’ve just reminded me, bc nurse mentioned something about if second area is pre-cancer. Do you know if that’s the same as LCIS? It’s all very confusing and interesting that your LCIS did not show on your MRI. Not sure I like the thought of an implant…
Yes LCIS is pre-cancerous cells - it’s lobular carcinoma in situ - in ductal cancer it’s called DCIS. My consultant did say after the lumpectomy that if you looked REALLY closely at the MRI, the LCIS could be seen - was rather annoyed that they didn’t look “REALLY closely” before the surgery so that I could have avoided 2 ops but hey ho.
I’m going to be having my implant removed in a second operation in about 3 months time - my second recon is going to be a C cup as I hate having big boobs (never used to have such big ones!!) so my PS is going to make the first recon smaller to match the second one - I’ve been wandering round M&S lusting over the pretty little bras with thin straps!
Hope you get good news from your biopsy and you can just have a lumpectomy - mine was really good and the scar was pretty small.
Sally, how long since your recon and have you had any problems, such as numbness, tingling, etc? Has it had any effect on the strength of your abdominals? I do quite a lot of exercise and I’m not sure if I want to compromise. Just been on the breast free website and in some ways it seems to be providing these women with a freedom they couldn’t have with a recon. But… clothes are a problem aren’t they? I’m short and so tops are often too low for me already. That would be worse with a prosthesis wouldn’t it?
Sorry, you can’t answer that - I’m just thinking out loud.
That’s ok - I remember having so many questions too, but it never occurred to me not to have a recon - I would hate not to have a breast. I had my recon in April 2007 and it’s still quite numb but it’s very natural looking - I wore a bikini on holiday in August 07 and no one could tell that I’d had a mastectomy. I don’t find the numbness a problem, but I used to get quite a few stabbing sensations - I think this is the nerves knitting together again - I don’t get them so often anymore. I don’t think it’s had any effect on my abdominals - I had a hernia which I had no idea about so that was repaired - she also repaired the tummy muscles that get pulled apart when pregant so that was a bonus too!
I’ve seen that website too and it’s very good - a lot of women on here are happy with no recon. It’s such a personal choice. I suppose you could always see how you get on with no recon and if you change your mind you could have one later, if you don’t mind having more surgery.
Good luck with your decision - it must be hard to be left to decide - I had my recon only 1 week after being told I needed a mastectomy and didn’t really have any time to think about it too much.
I’ve read all the exchanges, mainly under here and the thread on construction or not. It’s the first time I’ve put finger to keypad and really not sure what I’m asking so bear with me!
I have widespread DCIS and due to have mastectomy with LD flap and implant next week. I’ve tried not to dwell on it too much since my diagnosis in November but as surgery gets closer, I’m moving in to panic mode and seem to be having quite a few irrational thoughts.
To be honest, I wasn’t given much choice about whether I wanted reconstruction or not - they more assumed. I have thought all along that I didn’t want to be without a breast - in the summer I spend quite a lot of time on the beach in Turkey and figure bikinis would be quite difficult and topless totally out of the question. I know mine are very vain and irrational thoughts but I find myself now more worried about the scar on my back and the muscle I am going to be missing as I didn’t realise it was so big.
I’m going to talk again with my BCN but I wondered if anyone who has had this surgery could tell me what effect it has on your back itself. Is it just a scar or is the physical appearance of the back different without this muscle and are you as mobile? Some photos I have seen seem to show quite an indentation where the muscle has gone. Feel very guilty about thinking this way but I’ve always thought of my back as my best feature (don’t have much else going for me!!) and tend to wear clothes that show it off more than my front. I also do quite a bit of dancing and could do with some reassurance that mobility is the same.
Any comments greatly appreciated even if it’s to tell me to buck my ideas up!
Hi Huddy, just read your comments and wanted you to know i have all the same “vain queries”. I like my back too! Before my mastectomy in November i was quite toned from years of dance classes and weight classes. I have had radiotherapy and have been told the only option for recon is ld flap. Think i’d rather keep my muscles as they are and not have recon.
If you are still not sure why don’t you ask if they just do mastectomy next week and you can decide on reconstruction later in your own time?
Good luck next week.
Hi Huddy. I too felt that the surgeon just assumed I would want recon. I guess a lot of people don’t think twice about it but I have mixed emotions. You do have a choice - even at this stage. It’s got to be what is right for you - not what is assumed is right for you.
If scarring is your main concern, I would say that it does fade with time. I had shoulder surger in April 07. Only keyhole admittedly, but i have three scars that are barely noticable now. Not the same I know, but something to bear in mind. And also, you don’t look at your back all the time do you? But every time you look down, you see your boobs, so you may want to consider that. Talk to your bc nurse or helpline on this website. You may just need to talk through the options in order to become clear what you want. Just make sure that you are entirely happy with what you are having done before next week.
I had a mastectomy and ld recon in september. i too was never really given a choice, im in my 20’s and the docs assumed it was what i wanted. consequently i went in pretty blind.
My op went well but I had every side effect and complcation going which meant recovery has been over 3 months. It was not a great 3 months but wounds are finally healed. The two things i was really worried about were scarring and being nipple free and yet its turned out that these and the things i’m not bothered by! My scars are not pretty due to the complications, but i know they will go white and i have seen a friends boobs 10 years after an infected op and they ar only noticable close up.
What does bother me is restricted movement. I can feel the muscle wrapped around my ribs all the time, it isnt painfull but has effected my breathing. I was super fit before the op and have found it really hard work to work out as i dont feel my lung capacity ius a s great on my operated side. I have had to do lots of breathing excerises and teach myself to breath deeper because it takes extra effort to fill the lungs as i have to get my ribs to push the moved muscle. It can be done and i’m determined to get back to full fitness. i also have restricted movement in my shoulder as scar tissue has built up under the skin and ‘stuck’ it down i am having physio and hope to get 95% back.
i am a small person with tiny boobs and virtually no upperbody fat, This has meant that you can see the muscle wrapped around from the back to the front, i am basically thicker on my left side. THis bothers me as from the side or back i think i look odd. If i was bigger and had fat over my ribs this wouldnt be so apparent.
I am not trying to put yopu off the recon, i’m glad i had it done, as i have a good shaped boob, better clevage than before and i know that i am one of the unlucky ones to have had so many complications, it is more than likely that your ops will be more straightformwarrd, but from talking to people on here and other friends in similar situations restricrted mobility to some extent is normal whether it lasts or not seems to be a mixture of age, original fitness and willingness to work at it. (my physio said many women would be happy to have leave their mobility at a restricted level and accept it. )
My advice would be to ask your BCN if there are any support groups nearyou. I went to one and some of the ladies were quite happy to get their boobs out. It was MUCH more useful to see a real body that has had the op and not just a photo, i wish i had done this BEFORE my surgery!
Sal -My consultant/surgeon was one who could do both surgery and reconstruction. My cancer was lobular too. Because it is slow growing nobody ‘saw’ a lump - it was that the underneath of my breast looked like an underwire bra had indented it, that made me spot it.
I wish (this was 2005) I’d spent more time on this site before I had the surgery. I would have been so much better informed, and able to ask questions. I had LD flap but they didn’t get clear margins so had to have more surgery - mastectomy and implant.
The irony is that up until the morning of the surgery, after he’d drawn lines on me and I was being prepared for surgery I was having a mastectomy with LD reconstuction, as he thought the tumour was too large to save the breast. He then came to me at the bedside and said he’d discussed it with his team and they thought they could save the breast so were going to try. What would anyone have said? I was happy and trusted them.
The result of that first surgery looked great and I was relieved. Then came the bombshell -they didn’t get the clear margins. More surgery and the result is a mess.
What I’m trying to say is, just because a consultant CAN do reconstruction at the same time, doesn’t mean he’s good at it. Check as much as you can about what he can do. You can always have the reconstruction done later. By that I mean, he may be the best as a breast cancer surgeon - it doesn’t make him the best at reconstruction.
That all said, would I do it again? Yes probably, because I wanted it all done at once - I’m such a wimp I wasn’t sure I’d go back for more reconstructive surgery a year up the road. BUT, I’d do a lot more research on here, on him, and may even have gone elsewhere.
Good luck, I’m not trying to put you off but just ask the questions you are asking here before you decide. I wish I had!
Thanks Lou and Caz. I’m doubtful about waiting for recon later on too. It means two lots of surgery, two recoveries and I know how frustrating that is. Had major shoulder injury in April 2006 and then a year after that surgery on the shoulder and I’ve only just got that all sorted! It’s driven me nuts with all the physio etc and not being able to do things.
I know it’s not definite that I’ll need mx, but it’s been 5 weeks since my dx and I want to get on with things once I know what I’m having done, so I almost feel I need to have made the decision beforehand. If it comes to it, I think I’m going to ask if I can talk to others - some who have had recon and some who haven’t. It’s such a hard decision to make. One minute I’m saying I’m not going to bother, but then I think that maybe I haven’t thought enough about the emotional impact of being flat!
I’ve had an LD flap (which I lost because of a recurrence in the skin) and now a replacement DIEP which I had done on Dec 18.
Don’t write off the the LD flap! With the immediate skin sparing mascectomy and LD flap, I can honestly say that cosmetically this was amazing and matched my other boob perfectly. I certainly never noticed any difference in strength from lack of muscle, although if you have your lymphs removed you will always be advised not lift too heavy objects. The scar on my back sat nicely behing even the skimpiest of bikinis and the whole thing matched my other boob perfectly. (I had terrible tennis elbow before the op, which because of the forced rest completely disappeared!)
I too am skinny so when I lost my LD flap I was nervous that I did not have a big enough tummy for the DIEP. This time it is been post mascectomy, so the scarring is all the way round the breast and right accross my tummy. They ended up having to use a small amount of tummy muscle too and I am going to have to have breast reduction and lifting on the other side to make it match. HOWEVER, I do believe that if you have this done as an immediate reconstruction, you can have an implant to make it match and the scarring is just underneath.
For the year I was without one boob, I personally hated it. I was/ am a 34c cup and looking down on my flat side and that darned prosthesus was a constant reminder.
For me the recovery has been easier with the DIEP, which is weird as it’s a bigger op, but that could be because I’d already had the mascectomy (so my hormone levels weren’t affected) and that perhaps I’m now used to long ops!?
Hi ladies. Thought I might be able to answer a few of your worries re: LD flap, as I had a mastectomy and immediate LD recon two months ago at the end of November. First of all, to the lady who sunbathes, I think you might find that you have to re-think that section of your life when all your treatment is finished. Re: the LD flap - the operation was pretty painless, and everybody is very pleased with my new boob. You know there’s a ‘but’ coming, don’t you?! Well, maybe I was just unlucky, but one of the 3 drains that are supposed to be finished with after 7-10 days carried out chucking out 100 mls daily for 20 days - came home with new bottles and changed them myself in the end! Then back wound - ‘iffy’ from the start - opened up and was left with a 3 inch gaping hole (about that deep too!), and am still having district nurses in daily to dress it. Saw consultant yesterday, 'cos I was on a promise for a skin graft before my 2nd session of chemo starts, but he’s changed his mind and have to carry on with the daily dressings 'till it heals itself - apparently another month or so. Skin is so very sore when these dressings are peeled off, don’t know how I have any left. I really, really don’t want to put anybody off having this done - you will all probably be fine - but I just thought you ought to hear one of the ‘bad’ stories. I wish somebody had told me! x good luck, Jacq. x
Thanks Nikki and Jacq - I think it’s important to get both sides of the story, so your info has been good. Still confused though. I’ve just been trying to research my surgeon and found a story about him doing one of the first lipomodelling recons in the country. It looks like you have to wait for a while after your mx, and I’m not sure what size they can go up to (I’m a 32E), but it looks like the op’s only one and a half hours and therefore quick recovery.
There are just too many choices aren’t there? I keep saying I’m not going to think about it any more until I have the decision on Friday, but my mind keeps coming back to it…
Diagnosed in may 07, found a tumor of 5cm grade 3 oest rec pos, surgeon sugested a lumpectomy, had that done in june, but they didnt get the clearance that they needed, so, had to go back in and have more taken away, the breast “weeped” until nov 08-they told me it was normal!! Eventually it healed and on a 3 month check noticed some hardening-surgeon thought it was scar tissue, did a biopsy and was told that the cancer was still there (had chemo and rads) so now I have had a mastectomy last week, they recomended the ld flap, I am now home and my back has healed very well, no dressings on but am doing my excersises and trying to help my husband with our 3 yr old, the breast is fantastic, didnt need an implant and just wish i had done this 18 months ago, I dont mind the soreness, it will get better and hopefully will need no more treatment.
To be honest, didnt really have time to think about it, made the right decision for me and now can try and get on with a normal life.
So there you are Sal, a very very good side of the LD story from Jill, who thankfully seems fine and dandy! Think - as I said - I was just unlucky! But Jill, please be careful with lifting your little one - 'cos I think I didn’t help myself by doing too much too soon. Good luck, x Jackie x
I had a mastectomy and immediate recon using the LD flap in May 2008. I like you was all over the place trying to make the right decisions. Theres a ton of literature out there and i just got very overwhelmed by it all and did not know what to do for the best. My first initial thought was to just have the mastectomy because i just wanted it off and get rid of the cancer but then when i really thought about it i knew that psychologically it woud be too hard for me to have dealt with having no breast at 27 years of age and knew i would be happier having the reconstruction. My friend said to me " well you will be going down to surgery with two boobs and you’ll be coming back up with two boobs"!! And it just reaffirmed that i was making the right decision. Choosing between the LD flap and the tram flap was really hard. But my surgeon recommended me having the LD flap and to be honest the idea of the tram flap scared me in case it posed complications with future pregnancies although he assured me it wouldn’t but i just felt better about choosing the LD flap. I did the surgery very painful but it soon passed and recovery for me was quite quick and was home after 5 days and i’ve had no complications whatsoever. I’m a 34c and had to have small implant aswell. My scars have healed extremely well and i am very pleased my breast and know i made the right decision in having it done.
I think the best thing to do is to see people who have had it done as a photograph is hard to judge!
Good luck with your decision, i know its very hard.
Hi Everyone
I’m having to make an extremly difficult decission like most of u have faced,and would like as much info as poss. I had a widwe local excision in Dec and had the results yesterday, my IDC with no spread has turned out to be 2 tumours which were not seen on mammography, and my BC cannot say if there’s any others lurking about. I have been given option of another WLE or mastectomy. I’m dreawn to the later and woundred if anyone has undergone this with recon at same time haveing saline implant only as i’m not keen on the other options as i am quite busty. Can anyone help !!! as my mind is in freefall.
Thanks
Ann
Sorry you are in this position. In a way I was lucky as had the option taken away from me. Was offered WLE but opted for masectomy and was right decision - I wanted immediate recon as Im very busty but at the last minute changed his mind as rads might have affected it so just now deciding on recon options - although its been hard I got used to the masectomy more than what I initially thought - good luck and hope you get some responses soon
x