Breast Cancer Now Forum

Hi terrischnauzer - I had recon with an expander-implant in February, and I'm due to have it replaced with a permanent silicon one in the next few months, and to have a small implant put in the 'good' side. I'd heard some ladies have an augmentation as part of their reconstruction, and I thought that would be a pleasant 'bonus' from this whole horrible experience. I asked the plastic surgeon if he could do that, and got the impression that it's a completely normal thing to do, to get the breasts as closely matched as possible (so, yes, a bit 'implanty' on both sides lol).  Mines still a work in progress, but I've got to say it's looking pretty good so far. The anatomical implants a lot of surgeons use are a pretty natural shape - it's never going to look like the original breast was, but it's fine I think.  The downsides - if you have an expander like I did, it takes a number of trips to the clinic to get it 'filled' - the whole process seems so slow! And also implants don't last forever - my surgeon says they need to be changed every ten years or so. I've got to say though, recovery from the surgery was a breeze, and cosmetically I should get a pretty decent result.  Hope that helps a bit. Good luck to you whatever you decide! Xx ... View more

Can only back up the suggestion here to go back to your GP and ask for a second opinion. Or even a new referral elsewhere. I don't understand why your consultant is saying your cancer doesn't warrant a mastectomy. Many, many women with DCIS have mastectomies, especially if they have little breast tissue, because a lumpectomy can leave a small breast deformed. And yes there are options for reconstruction after radiotherapy, although I've heard it can be tricky, but not impossible, with implants. As a survivor of sexual abuse your psychological wellbeing is VERY important. Is there a clinical psychologist at the hospital your breast care nurse can refer you to? He or she could be a great advocate for you. In fact your GP could too if there are very clear psychological issues at stake. Hang in there. You'll get there xx ... View more

Hi Carolyn - as far as I know mastectomy scars always go across the middle of the breast, where the nipple used to be. Mine's just a couple of inches long, and has faded well. I'm not sure what happens in nipple-sparing mastectomies, but like I said below, I get the impression they're pretty rare anyway. I had reconstruction with an implant at the same time as my mastectomy, and the operation itself really wasn't bad at all. I wasn't ever in any pain even. Was pretty wobbly for about a week afterwards (turned out I was quite anaemic - iron tablets sorted that out), and was back to work a week after that. I think with some other forms of reconstruction you'd be out of circulation for quite a while longer. Best of luck to you today, whatever you decide x   ... View more

Hi Carolyn,   So sorry to hear about your diagnosis. It's just such a horrible shock isn't it? You know though you are most definitely NOT alone. So many of us have been where you are, and have come out the other side. It's a good thought to hold on to.   I had a skin-sparing mastectomy last year. I didn't get to keep the nipple though - in fact I think it's very rare to keep the nipple after a mastectomy, as it's breast tissue, and there's too big a chance of the cancer coming back in it. My cancer was the same size as yours, but there was an area of dodgy tissue around it that couldn't be biopsied properly so needed to come out too. What with removing that, and some healthy tissue to get a clear margin, I would have lost an awful lot of my (A-cup) breast, so mastectomy was the best option for me. I had immediate reconstruction, and really the whole procedure was nowhere near as bad as I thought it would be.   Do please ask if you want more details. I think generally breast surgeons will try all they possibly can to save the breast, but sometimes, even for cosmetic reasons, it just doesn't work. It might be worth asking your consultant on Monday how much disfigurement you would have after a lumpectomy. I know some ladies have really fantastic results from it though - and what a bonus to actually get to keep your breast 🙂   Best of luck with whatever you decide on Monday. Will be thinking of you. x ... View more

Great thread! I didn't have LD recon - just an implant - but I couldn't agree more with you about the lack of information and advice about reconstruction, and all the assumptions made about what we *should* want. I thought I was going mad as well! I was delighted to leave hospital with some semblance of a breast, and I think my cosmetic outcome will be pretty good in the end (it's still a work in progress) - and, yes wow, look at what these surgeons can do technically, and it's all available on the NHS!! But I was told NOTHING about the alternatives, or the long-term stiffness and weakness. It was just assumed that, as a woman, I'd want recon even with all the (unspoken) downsides to it.   I had my mastectomy and implant recon in June last year. Both my surgeon and BCN said they couldn't understand any woman offered immediate reconstruction turning it down. To be honest I didn't think I had any choice, and felt really bumped into it. I was given no information at all about living breast free, or even going down the delayed route so I would have some time to weigh things up - my head was all over the place at the time. The cynic in me thinks these surgeons need to build portfolios and meet targets - red flags were flying when my BCN couldn't show me a single photo of a recon my surgeon had done, but I was so keen to get rid of the cancer, and avoid any aggro, that I just went with it. The result was a predictable hot mess. Naz - I've read your posts and I've got to say I identify so much with the distress of living with a botched recon. It's so hard to look at yourself in the mirror and see the results of someone's careless work staring back at you, isn't it? It's not the same as a decorator making a mess of a paint job in your living room is it?! It's your body!!   Since then happily I've been referred to a lovely, skilled plastic surgeon, who's doing a great job of putting things right. Still there though I suspect I will be given what *he* thinks is most suitable for my body.   There are so many assumptions here about women are *supposed* to look like. We're *supposed* to have two breasts - maybe even to make other people feel comfortable. I think too it can minimise the seriousness of what we've gone through. We've had a precious part of our bodies amputated - we can't cover that fact up with a plastic, numb mound. And no it's not a free "boob job" (and, yes, I've had that).   Soosie Soo - thanks so much for bringing this up. We really do need better advice and information - even just in the form of better written materials - so not just explaining the different forms of recon, but explaining more about the alternatives, and the emotional impact. Would love to help out with that if it was any use (am a journalist).   Wow - please excuse the huge rant! Feels good though to share with you lovely ladies.   Janet x     ... View more

Hi Kaya - I had an expander-implant put in in February, it was filled half way in surgery, and have had two more fills so far. We're all different, but I've found it absolutely fine - a little tight and achey straight after each fill - but no pain. I still have a way to go though so it might be a bit more bother as it gets fuller. I know many women just sail through this process though.   The port sits just under the skin under my arm, and it's no trouble at all - I can even sleep on that side fine. Once the expansions are finished I have the option of keeping the implant permanently - would just need one small procedure to remove the port. I'm thinking though of having it replced with a permanent silicone one, as I think they're softer (the expanders are saline in a silicone shell - and mine feels pretty rigid :-)). The combination expander-implant is a great option if you want to avoid as much surgery as possible - I know of many women who have temporary tissue expanders than then have to be swapped for a permanent implant. Good luck with whatever you decide!   Janet x ... View more

Hi again Moira - glad something helped.   It's no wonder you feel your life has been turned upside down - it has. It's devastating to hear you have cancer. It's nearly a year since I was diagnosed and I still think about it every day, and lurk here, even though my outlook is good. I also could think of nothing else in the first few months - every waking moment, actually even dreaming about it too! I suspect it was my poor old brain trying to process the shock. And I also switched into manic research mode like you - I think it's a way or regaining some control over the process when everything feels like it's totally out of control. Do you find that? So - you're allowed as many meltdowns as you need.   It sounds like a great idea to delay the reconstruction - especially if you might need more treatment. I've heard radiotherapy and implants aren't a good mix. And it's one less thing to worry about right now. You're also right about the implants - the flap options are much more natural looking - really worth holding out for that if that's what you want. I just couldn't bear the thought of surgery to another part of my body - and as I'm quite small I'm getting an implant in the unaffected side as well, so thanks to the surreal world of breast cancer I'm getting a mini boob job, and the two sides should match better than if I was a bit "saggier" 🙂   I have to say I cringed when I read about the room full of medical students! No wonder you felt uncomfortable. I was treated at a teaching hospital, and I thought baby doctors just came with the territory, but after a while of having everything on display to allcomers I now say I'd rather not have an audience. It's never a problem. They need to learn, yes, but not on me!!   The best of luck with whatever you decide. Janet x ... View more

Hi Moira,   It's great we're given the option of immediate reconstruction, but it's all a bit much isn't it - having to decide on the reconstruction and deal with the cancer rubbish at the same time? I can really relate to that overwhelmed feeling.   I had my mastectomy last June, and felt under a lot of pressure to have an immediate reconstruction - in fact the alternatives were never even mentioned to me - delaying the reconstruction, or skipping it altogether and using a prosthesis. Also - the small local hospital where I was treated only offered implants or the LD flap - I was never told I could be referred somewhere else for other options. I also never saw a plastic surgeon - the breast surgeon did the whole thing. I remember feeling really stressed and anxious - and the end result wasn't good - massive relief the cancer was out of me, but left with a wonky implant in the wrong place. The point I'm making though is it was a nuisance, but really hasn't turned out to be a long-term problem. I've been referred to a great plastic surgeon, had the implant replaced, and am now half way through my fills - and it's looking good.   My BCN said after the mastectomy that most cosmetic problems can be corrected, and that reconstruction is a process - sometimes a long one, and I think she was totally right. If I'd known that at the time it would have taken a lot of the pressure off. So maybe it would help you to think of this as the first step in a bit of a 'journey'? You have so much to deal with already.   Also - are you not keen on implants? They're far and away the least invasive option, and the results can be pretty good. Even with my tale of woe I'm glad I had that wonky implant placed because it meant my skin has been kept in pretty good nick. Touch wood - that's going to make for a better result now I'm hopefully on the right path. Could you have the implants placed as a 'holding' device while you explore your options further? It means you would never be entirely without a breast, and could buy you some time while you look at other possibilities. I've been told I can still have a DIEP flap if the implants don't work for any reason. Also - we're all different but I really haven't found the fills of the expander painful - it can feel a bit tight and achey - but no real pain.   As for fat grafting - my plastic surgeon wants to try this to smooth over some ripples and dents in the implant - it sounds like a great option for this. From what I've read, though, it can be very difficult to build a whole breast this way - maybe a teeny, tiny one - but not a 36B. I've also heard a lot of fat can get reabsorbed by the body - and it HURTS! Would you be getting this done privately? I also doubt it's available on the NHS.   I've found this forum a real godsend - but there's also an American one with a lot more in the way of personal experiences of different sorts of reconstruction. It's called breastcancer.org or something - Google it. I found it really helpful.   Wow - I've written a BOOK! Hope some of it's helpful, and really hope things turn out well for you. Good luck for your surgery and let us know how you get on.   All the best, Janet x   ... View more

Hi Kirstykat - I couldn't just read this and run, as I've been in the same sort of situation as you. I had my treatment (mastectomy and reconstruction with an implant) at my local hospital, and it was not a good experience. Bureaucratic c*ck ups, unpleasant staff, and a very poor cosmetic outcome.   I spoke to my lovely GP about this (actually just a chat on the phone - didn't even need to go into surgery), and she said I had the right to be referred to anyone on the NHS in England, and if I gave her the name of a consultant I liked she'd do the rest. I don't know the exact ins and outs of this "right" - I know there are exceptions - maybe someone on the helpline here would know  more?   I'm so glad I persevered with this. I'm now seen for my follow ups at the breast clinic at a fantastic hospital, and have been referred by them to an excellent plastic surgeon who is putting things right for me. There really is so much they can do.   I found what helped was researching breast surgeons who work privately but also do NHS work - there's plenty of information about their credentials on line, along with patient testimonials etc. I then made an appointment to see a couple privately and chose one I really liked. She's the one my GP referred me to. It's not a cheap option of course - I think I paid about £200 for a consultation. Might be a possibililty though?   Really hope you get a good result. Keep pushing for it! We deserve it after all we've been through.   All the best, greenleaf ... View more

HI andyx - so sorry about your wife's diagnosis. I bet you wished you'd never end up here, but both my husband and I found this forum so helpful at the time of my diagnosis. Hope you can get something out of it too. In fact I'm surprised more partners don't post on here (maybe they just lurk?). A BC diagnosis is such a shock and burden on them too - in fact in some ways even greater than it is on us - at least we know exactly what's happening to us and can be proactive.   Like maggie says both you and your wife sound like strong, capable people. Believe me, those are great qualities to have right now. I took a lot of comfort from arming myself with the facts, knowing that BC is so treatable, and (sadly) also so common. You and your wife will manage this, because you just have to. Concentrate on the specifics of your wife's diagnosis and treatment plan, don't compare too much with others, and - definitely - no "what ifs" or "worst case scenarios". Just one day, and one little step at a time.   I know how difficult my diagnosis was for my husband - but in a strange way it's made our marriage a lot stronger. We've worked together to get through it, and come out the other side. We all need to keep an eye on any positives that come from this whole wretched business.   All the very best to you and your wife, Greenleaf xx ... View more

Wish I'd seen a thread like this when I was diagnosed with BC in May this year! I wondered if I was some sort of freak in the way I coped.   Ladies - great minds think alike! I took the attitude too that nothing could be changed so best just deal with things as they come up, take a day at a time, and focus on my medical team's (positive) assessment. I too thought I was in denial - thought I'd collapse in a quivering heap a few weeks later when reality struck. But seven months on and - nope - nothing. I'm out the other side, counting my blessings.   There really is no "normal" way to deal with this. Just what ever feels right to you. And it's YOU and how you feel that matters!   I hear you about other people! If it ever happened to me again (God forbid) I would arrange someone to help my amazing husband cope with the practicalities of my care for the week or so post surgery, maybe tell a close friend of two who "gets it", and leave the rest till it's over.   Whatthehell I get totally what you mean about feeling "embarrassed" - I hated the cards and flowers, the sickly "keep smiling" messages (smile about WHAT precisely?!), the sympathetic glances, and the "handholders" (don't even get me started on them!). But worst of all - the gossips - and the ones who made it all about them.   Interesting seeing how different people cope with friends/relatives with a cancer diagnosis ... some real suprises there I must say  ...   And yes please mine's a Sauvignon too 🙂   Best of luck to you all. You're doing great.   Greenleaf x     ... View more

Hi booksandwine - I'm not surprised you're angry and frustrated. After all you've been through it must have been comforting to have a timescale to work towards to getting on with life. It really isn't too much to ask.   I can relate to you, although I was lucky enough not to need chemo or radiotherapy after my mastectomy in June, so I did have an immediate reconstruction with an expander implant. The problem was my surgeon - who I'm sure is a perfectly competent breast surgeon - wasn't so hot in the plastic surgery department. The result was a mess, and because it was botched, the implant couldn't be inflated. I don't even want my husband to see the resulting weird, growth-like lump on my chest.   I was passed back and forward, and spun a number of lines by the hospital for months about this, until I finally asked to be referred somewhere else. I really wish I'd known at the time how easy it is to be referred elsewhere on the NHS. Have you tried this? All it took was one quick chat with my GP on the phone, and two weeks later I had an appointment with a fab surgeon, in a different hospital, who in turn referred me to a great, specialist reconstructive plastic surgeon. I'm now on his waiting his list (and it's nowhere near a year long), and he's confident he can fix the mess. Just a shame I'll have had to live a year looking like the Bride of Frankenstein.   What I found really helped was researching the options. It made me feel like I had some element of control over things. I checked out a lot of breast surgeons who practice privately, but also do NHS work - websites of private clinics have testimonials, and detail on areas of expertise. I looked for surgeons who had excellent reviews for reconstruction. I then made a couple of appointments (not cheap - £200 a pop - but worth it I thought), and got ideas of how they'd fix things in their NHS practice, and how quickly.   Would that be an option for you? You could find someone who's more willing to operate quickly on radiated skin that way, who maybe doesn't have as long an NHS waiting list? You could also find someone you like a bit better - though I have to say, having met many surgeons over the years, communication skills aren't always a strong point. I suppose what really matters is surgical skill and talent - so sometimes we just have to put up with a rubbish bedside manner. That said though, your surgeon backtracking on his original timetable really isn't good.   Reconstruction can be a pretty long haul - no matter how good the surgeon.   Here's hoping you get things sorted soon ... and get on with life. (love your username by the way - books and wine - two of my favourite things :-))   All the best,   greenleaf x ... View more

Hi Ancross,   I really wish I'd had the presence of mind to ask your question when I was diagnosed in May.   I just assumed you "got what you were given" - if the GP referred you to the local hospital, then that was where you had your treatment. I had no idea you can request your GP to refer you basically anywhere on the NHS.   I was referred to my local (E London) hospital, and while I think they were perfectly decent medically, the rest of the experience was horrible - poor communication, rude staff, cancelled appointments, bureacratic mix-ups. From the start I had a bad gut feeling about the place, but just assumed I couldn't do anything about it. And also was so freaked out by the whole situation I just wanted to get everything done quickly. I'd also had no experience (thankfully) of hospitals, and just assumed that's what NHS hospitals were like.   I've since been referred to one of the big central London hospitals (not the Royal Marsden) for my follow-ups, and work on my reconstruction, and I can't believe the difference. So - really - trust your gut feeling, if you have little faith in your local hospital, ask to be referred somewhere else. i didn't even need to make an appointment with my GP - just a quick chat on the phone.   Also - if you are planning on an immediate reconstruction - really consider being referred to a surgeon with a well-documented, good reputation. I have a fab plastic surgeon now, but my original reconstruction failed. Don't know how much that was down to bad luck, and how much down to a surgeon lacking the skills - but there were a number of red flags I wish I'd heeded at the time.   As far as the delay goes - I had a holiday booked right after my diagnosis - and my surgeon said a couple of weeks' delay in my treatment would make no difference. Of course check though that would be the same in your case - we're all different.   Good luck with whatever you decide - and all the very best to you.   Greenleaf x     ... View more