Breast Cancer Now Forum

Hi Livia47   I don't suppose you are able to give an update on how you have got on with this please?  I am 2 years post op and my reconstructed breast (DIEP recon) is getting lumpier and lumpier with a few 'dips' now.  I am a bit concerned that I have fat necrosis and I don't know why this would happen after 2 years 😞   Did you manage to get anything sorted.   Thanks ... View more

Hi Sassy1, I just thought I would help to add to your decision.  I was naturally a C cup and I was advised that if I went for the LD flap then I may need implants as they don't know how big they can make the reconstruction until they get in there.  I opted for the DIEP myself as I didn't want implants and I had a 'plentiful' supply from my tummy (seriously, the PS wrote that on my notes lol!!) As you are naturally large breasted, they may struggle with the back tissue to get an even match 🙂   xx   ... View more

I'm not sure there's any hard and fast rule to be honest, but I think it's due to the changes that the breast goes through in the early months..  Personally, my breast took about 6 months to settle into its 'final' shape, but it's now a lot wider than my natural breast, so I wouldn't be able to find an underwired bra that would fit both breasts, whereas the non-wired bras are a bit more 'forgiving' and stretchy.   x ... View more

Hi Auntiewendy   I had a DIEP reconstruction in April 2012 and I am still not able to wear my  old 'normal' bras.  My shape has changed and underwired doesn't work anymore.  Royce do a lovely non-wired selection of bras specifically for reconstructed breasts.  They have their own website, but our local BHS sells and fits them too.   Hope this helps.   Mandy x ... View more

Hi Lilymole   I had a MX and DIEP reconstruction in April 2012.  I opted for the DIEP for several reasons.  I didn't want to have lots of surgery, the DIEP 'ages' with you (implants have to be replaced I was told) and I had sufficient (although the PS used the term 'plenty' lol) stomach fat for the procedure.  I too was diagnosed with DCIS and it was a huge decision to make.  I didn't want the TRAM operation as I felt that would be a longer recovery due to the stomach muscles having to be cut.   I think I was very lucky.   Nothing really went wrong  for me and I was back at work, part time,  at the beginning of June :).  I even managed to go skiing in February of this year, so pretty much back to 'normal', albeit a new normal.  For me, the tummy part of the operation was the most  uncomfortable.  I am still stiff sometimes and I can't stretch out fully anymore and most of the area below my belly button is numb.  I have begun to have feeling return in my reconstructed boob, although on some days it's not a good sensation - quite sensative and not pleasant.   On the plus side, I can be thankful that the cancer hadn't turned invasive and no further treatment was needed 🙂   I hope this helps, but if you need any more information, just let me know.   Take care Mandy x   ... View more

Hi Gillian   I too have had a diep reconstruction, with some 'uneven' bits.  I was introduced to a very good bra made by Royce (style 1011), specifically for reconstructed breasts.  I have found that it solves the difference in sizes and lumps and bumps are hidden very nicely.  They aren't all that expensive (about £28) and our local BHS (in Grimsby) actually supplies them (a bit cheaper than anywhere else I have found, especially as you will get your VAT back too).  Royce also have their own website and there is a company called WomanZone that supply and fit them for you too.   Hope this helps xx ... View more

Hi Laura C I'm also sorry that you have become a member of 'the DCIS club'! I was diagnosed in February 2012 and had a mx and immediate DIEP recon in April 2012. I am a bit like yourself - strong family history, but no BRCA gene, lots of areas of high grade dcis dotted around the breast and also some ADH (Atypical Ductal Hyperplasia) which are 'markers' for cancer cells. Due to the size of my breast and the amount that they would have to remove to get clear margins, and the family history, it was strongly recommended that I have a mastectomy. Given all the information that I had received, they gave me the option of a bilateral mx, but I opted just to have the affected side done. I was assured that just because I had it in one breast didn't mean that I would get it in the other one. Regarding monitoring, I have only been given an annual routine mammogram. Being under 50 that is something that I now get until I'm 70, in our area anyway. There doesn't seem to be any additional checks as standard. However, the breast care nurses are superb and if you have any worries they make the time to see you. It is a really worrying and emotional time, and the sooner that it is done will be better for you. Do you know when you will be having your operation, and what type you are opting for yet? Like Hay123 says, the reconstructed boob is different from your normal boob (if you only choose the single mx), but your body gets used to it quite quickly - between 4 and 6 months. As much as that sounds like an enormous amount of time, it actually goes quite quickly and all of a sudden it just happens!! You have yourself a new 'normal' lol. My PS managed to get fantastic symmetry with me and I have not had to have any other operations at all. I haven't had a nipple reconsructed either. It doesn't seem important to me at the moment and I don't really want to 'tempt fate'. I feel lucky that all seems to have gone ok for me (in the grand scheme of things). Some of the nerves in my reconstructed boob seem to have 'knitted' back together again and I have some sensation around the boob itself. It's not much and nothing like my real boob, but to me it's a comfort as it's like my body has accepted it (if that makes sense?). You will go through all kinds of emotions in the coming months. This site is fantastic. There is a tremendous amount of support for you. Take care, and keep us updated with what you decide. Love Mandy xxx ... View more

Hi DiamondLady It really is an extremely emotional time for you at the moment and I remember it well, and you have a massive decision to make, but the 'right' decision will be the one that you will make, if that makes sense. It has to be what you feel comfortable with at the end of the day. For me, I only wanted one operation and having nothing there wasn't an option for me, so I had an immediate DIEP reconstruction (the tummy one :)) following my mastectomy and I am more than happy with the results. The surgeon has managed to get very good symmetry and size and I will need no further surgery at all to either my breast or my tummy ('dog ears' seems to be a problem with the TRAM or DIEP), and I feel really lucky that that is the case, as there seems to be quite a lot of ladies that need more than one operation. From the very beginning, I only wanted to look 'normal' with my clothes on, but it's not a bad job without 🙂 I didn't consider implants as they need replacing after a period of time (I can't remember how long exactly, but every 10 years seems to ring a bell, but I could be wrong on that - you get so much information given to you at the time!). Only being 45 at the time, I thought that was quite a lot of 'maintenance', and I hate having anaesthetics! Emotionally, in the year following my reconstruction, I can't say that it's been an easy ride. It took me a long time to stop 'grieving' for my real breast and even longer to like my recon'd boob. It took about 6 months to take any proper shape other than a doughnut and it just felt as though it had been strapped to my chest. But 14 months on, it looks and feels natural, although some days it does still cause me some discomfort. Whatever you decide on, I hope that all goes well for you. There is a lot of support on this website, and it sounds as though you have a very supportive husband too. It is ok for you to be angry & sad. I can't say when it will end, because I still feel angry and sad on some low days. But I also feel incredibly lucky that my DCIS was found before it turned invasive and that I will get to see my family grow up and be there for them for (hopefully) a long time to come. Starxgal (Mandy :)) - good luck to you on the 5th too. Both of you, take care of yourselves Mandy xx ... View more

Hi DiamondLady Do you mind if I ask, why are you only considering an implant for a reconstruction? I'm sorry if I have missed any other posts of yours that explain why Mandy xx ... View more

😄 Enjoy xx ... View more

Hi Hay123. I used to get incredibly sore (and lumpy) boobs about 10 days before my period which would stop on the exact day that my period started. I found that this was the case the older that I got, so possibly it is hormonal. It still happens occasionally, but my periods are a bit all over the place now so I guess they might be getting ready to stop soon 😄 For piece of mind, it doesn't hurt to get it checked though. Better to be safe than sorry 🙂 xx ... View more

Hi Carol. I'm glad that things are beginning to look up for you again. I'm not surprised that you're a bit paranoid - I would be too. But to be perfectly honest with you, paranoia has become a bit of a permanent state of mind for me following my operation. Any slight twinge, tingle, pain that I haven't experienced before sets my mind into overdrive. For example, just recently, I have been having quite a lot of wierd sensations (and not all of them painless). Of course, my mind thinks that it's starting to die off or something - in spite of reassurances from the medical profession that all will be fine after x amount of weeks post op. On the plus side, I've just got out of the shower this evening and whilst drying myself off, I've noticed that I have quite a lot of sensation actually in my breast and around the flap!! My BS has said previously that the pain/wierd sensations are the nerves 'firing off', so maybe they are beginning to knit together again (after all this time!). I'm sure they said that if you hadn't got sensation back within the year, then it was unlikely to come back at all. Watch this space on that!! Regarding 'what is normal' for a reconstructed boob. I'm sure everyone is different, but in the early days, I think mine just felt like something was strapped to my chest. It felt heavy and uncomfortable. I don't think I felt very much for the first couple of weeks, but then I had pain down the outside of the breast. I had this for quite a long time - many months. I'm not sure when it stopped (or even if it has to be honest). I have more of an 'itchiness' there most of the time now, which is quite uncomfortable. I can't quite remember when it stopped feeling like a lead lump on me all of the time. There are still days when it can feel a bit like that too, but not many. These are usually when I've done too much and the muscles are a bit tight. I can't stress how important it is to do your exercises. Even now, when I've been a bit lazy, I feel very stiff in my shoulder and arm!! You will get to know what is 'normal' for you though. BUT try not to worry too much when it changes, because mine is still changing after 14 months! The shape pretty much settled at about 6 months, and I'm happy to say I have very good symmetry, even without a bra on. Another little tip for you! Moisturise!! They will tell you when to start doing this, if not already!. I'm sure when they told me I was mortified. As much as it is uncomfortable to start off with, it really does help with the healing - it breaks down the scar tissue apparently. It also helps with the blood flow and makes your skin feel less tight 🙂 Anyway, have a good evening. Hopefully, you will be able to go home tomorrow xx ... View more

Hi LB. I would be the same as you - at the back of my mind, just wondering if or when it might turn into the bad kind. But, I suppose, we can't let this control us. We just have to try to get on with life, and deal with whatever (if anything else) comes our way 🙂 And have lots of happy and positive thoughts 😄 xxx ... View more

Oh Carol, I am so gutted for you 😞 After everything that you've been through, and now this. But, as you say, you are in the right place for it and they can start the treatment straight away. At least, it appears that it's been caught soon enough, but it sucks a lot that you may have to have another operation 😞 I shall be thinking of you tomorrow xxxx ... View more

Thanks for that information LB. I will definitely keep checking, although, I never had any symptoms in the first place - I actually went to the doctors with a lump in my other breast, which turned out to be a cluster of cysts!! At least we get an annual check up now 🙂 xx ... View more

Glad things don't appear to be so bad regarding your boob, but sorry to hear about your stomach upset now 😞 You're really going through the mill at the moment!! Glad it doesn't seem to be getting you down though - keep smiling 🙂 LB, I will have to have a look out for one of those seatbelt covers - on long journeys, the seatbelt can still be quite uncomfortable when I'm driving. xx ... View more

Carol, I too had an area on my boob that they called 'an area of concern'. It took longer to heal than the rest of the flap, but it did heal ok in the end. I also have an area of fat necrosis, which causes a slight dip in the boob/chest wall, but it's not too bad - not bad enough to warrant any further surgery anyway. I'm a massive wuss when it comes to surgical procedures, so things would really have to be bad for that!! After my biopsies, I discovered that I was massively allergic to the steristrips that they use. I also took my dressings off earlier than I should have and I had blistered. It took quite a while for the redness and blisters to subside, so I told the consultant and they didn't use them during my operation. I had some kind of glue instead(very messy to clean off!!). Polly, one thing I would suggest is a pillow (or two) for your journey. Unfortunately, it is still law for you to wear your seatbelt which will be uncomfortable for you. I bought one of those little rectangular pillows you would put on a bed or something and used that for my tummy area. I had a rolled up towel over my shoulder that lifted the seat belt away from my breast. But, as you say, dose yourself up with painkillers. You will also have to watch out for those bumps in the road!! I had a 50 minute journey home and that was long enough, so you may want to consider breaking the journey up, even though you will just want to get home. I was dosed up on morphine during my first night, so I wasn't really too aware of the disturbances - just woke up when they came in for a check up and a sip of water! You just get through it though 🙂 xx ... View more

They do differ at each hospital/health authority. I was on one of those anti-bed sore mattresses for the whole time that I was there. They are loud, to say the least, but also quite nice. I'm not sure of the technical details, but they blow up quite often, and the air kind of moves up and down the mattress. I too had the massaging wraps around my calf. There really is quite a lot going on on that first night!! They didn't use a doppler on me at all - they used something that took the temperature instead, but I did also have the warming pad on my boob. And of course, the heating was on high in the room. xx ... View more

Polly, definitely need some chapstick! It's such a long operation and the room has to be so hot that I found my lips were so dry and chapped. And bigger than normal clothing. I think with the after-effects of the anaesthetic and the heat I seemed to swell up and my clothes were too tight to wear. Nothing elasticated around the waist - I found the 'hipster' leisure pants sat quite comfortably between my tummy wound and repositioned tummy button. Button up nightware/tops will be useful, because they will check on your breast 'flap' quite a bit, and you will not have the movement in your arm for over-the-head clothing either. You may also find that the bra that you bought before your op will be too small too. As LB says, you change shape quite a bit during the recovery period (which can last quite a few months). If they allow it, your phone and some good reading/puzz;e books! Carol, patience is the key to recovery! And rest! It sounds a bit like a seroma, which is quite common after surgery (http://www.breastcancer.org/treatment/side_effects/seroma). If your health team were concerned about you, then I'm sure they would have you back in hospital to deal with it. Mandy xxxx ... View more

Duffer56/Carol - you certainly seem to have kept your sense of humour. I hope you're ok 🙂 xx ... View more