I am new to this site. Its taken me two weeks to pluck up the courage to register and a day to pluck up the courage to post.
I am in my mid 40’s and was diagnosed with DCIS in the ducts behind the nipple, plus a small (16mm) invasive tumour near the nipple, (at about 7 o’clock,) on 16th Dec. Initially I was offered a WLE with nipple removal, but after some discussion was offered a mastectomy (mx) with immediate recon via implant – the type that are inflated and then replaced with silicon implants later, plus nipple reconstruction. I am concerned about what I will look like post surgery – would love to still be able to wear a bikini on holiday and the odd strappy top, ( although by and large I am quite a cover up sort of person.) The WLE would involve me loosing about 25% of my breast tissue as I am small breasted (A cup). I have always been pretty happy with the top half of me – bottom half wrecked by 3 c sections, varicose veins, leg surgery as a child, and flab. The surgeon feels that the mx would give me the best results cosmetically and would probably avoid rads but is happy to do either WLE or MX. Then I have read through much of the info and discussion on this site and find it is not all so straightforward as it seems. I really dread loosing a breast and nipple and feeling that I have some foreign object stuck inside me, which might look OK but will feel all wrong and that I will hate and resent. I would like to keep the breast I have, but obviously can’t, but wonder if I would be happier keeping whatever the surgeon can leave behind and coping with the consequences. If I don’t have mx I would need rads (don’t know about chemo in either case,) and believe that rads also further damages any tissue left behind, so if I go down the WLE route I could end up really deformed.
Has anybody out there faced this decision? Had any positives or negatives about the decision they made, or has any advice or insights to offer that will help me decide what I should do? Perhaps you too are facing this decision? What are your thoughts? Theoretically I have surgery booked for 12th Jan but don’t feel I can consent at this point.
Of course I should really be worrying about the cancer – its seen off a few family members over the years. I wonder if there is a huge defence mechanism in there that won’t admit I have it – after all I don’t feel ill.
Thanks in advance for any advice.
Am also posting on the newly diagnosed thread.
Hi there,
Feeling for you at this time when everything seems overwhelming and if you’re like me, you dnt feel you know enough to choose.
I had a dx of DCIS high nuclear grade which they said was multi focal and therefore a mx was recommended. I’m a c cup normally and my DCIS areas were really small but they still said mx would be best overall treatment. You’d see if you found my earlier posts, I’m a total wimp and was also proud of my boobs so this was a real disaster period for me!!! My kids persuaded me that if I was having a GA and surgery I might as well go for the option that would give the best long term result.
So, I went along with this and had a mx and immediate recon five weeks ago. I chose the DIEP recon option so I had to wait a bit longer than if I’d had a simple mx and implant, and I was also referred to a more specialist Plastic surgeon for the recon part. What was a total relief to me has been that it hasn’t involved what I saw as losing a breast, but emptying out the filling and refilling it, with my own fat in this case. It sounds daft but just seeing it like this made all the difference to me!! Oh i had been so angry and upset about the dx!!!
After my surgery a minute trace of pagets disease was identified behind my nipple so i would have lost it eventually even if I’d had a wle and kept it initially. Basically I’ve got a patch of tummy skin in place of my aerola, but when I’ve had a nipple recon, it will look pretty much like the other side. I don’t know if DIEP is suitable for you after C sections but the tummy tuck side of it has meant that I’ve got rid all of the skin with all of my pregnancy stretch marks. I’ve still got swelling but even so my tummy is much flatter than before and my new boob is on the way to being a match. All of the surgeons say that my cleavage will be perfect…right now sports bras keep it all covered up a lot!!!
I guess our paths may be different in that I didn’t have any invasive cells to deal with, so it was just two tiny bits of DCIS. A mx seemed a drastic way to deal with this, but for me, I felt I’d rather know all the tissue was out than possibly have to go back for more surgery if they didn’t get clear margins in a wle. Perhaps the helpline or your BCN could introduce you to ladies who can show you the results after both types of op? so sorry you’ve had to join us here but alomg with all the other ladies, im happy to give you any help I can.
Hi Oakleaf
I have just read your post and my heart goes out to you because of the
confusion at this stage of your diagnosis that I can relate to. Its thirteen years since I was in your situation and I was advised because of the margins to have mx. Reconstruction was offered at the same time butI was too scared I just wanted the cancer out. I had reconstruction Jan last year 12 years after the mx. Just wanted to suggest take your time to make your decision. Research, get other ladies stories. Join a support group if you haven’t already done so and yes get to meet ladies who have had the same surgery that are willing to show you their results. I had diep flap reconstruction and I can’t believe the outcome. Its truly amazing and although I rejected the stitches on the tummy and had to have it dressed for the following four months when I now look at the tell-tale line, its rapidly fading. 12 years was a long time for me to take that step, but it was MY TIME. Its a big decision and one not to be taken hastily. Go with your gut instinct and listen to the experts but you make the decision in your time.With love and gentle hugs. All will be well.XX
Hi Oakleaf
So sorry that you’ve had to join this club, but you’ll find lots of support and information on the forum.
I didn’t have your dilemma - it was mx from the start. But I did have an immediate LD Flap recon - and, while I would obviously prefer my ‘old’ boob, I’m very happy with the result (had it done Jan 2011). The LD flap (which uses muscle from your back) may be an option if the tummy ones aren’t for you.
I’ve posted about my experience in the past if you want to do a search, or I’m happy to pm you more details.
Take care and good luck.
Dx
i had dx of DCIS and surgeon thought WLI followed by radiotherapy would be best option for me. Unfortunately following this op he discovered the DCIS was a much larger area than first thought and then I had to have a MX so 2 ops in a matter a month. Not great but so pleased I’ve now had the MX as although I’m struggling a bit with my back (I had LD flap) the breast is starting to take shape five weeks on. I was pleased the surgeon didn’t give me a choice - have you asked which he would recommend? I know my surgeon did recommend wli first time round but after first op he was clear only a MX was suitable which did make it easier. I am only small busted so having to have more taken away in a second wLI would never have worked as there would have been so little left. I don’t know a lot about the implant recon but I can say the LD flap recon can look really natural and I feel mine is improving every day
Hi Oakleaf
As well as the support you are receiving on here you may find it helpful to talk things through with a trained member of staff on the BCC helpline. Here you can talk through your options with someone who will offer you a listening ear as well as support and practical information. The lines are open again tomorrow and the number to call is 0808 800 6000.
Best wishes Sam, BCC Facilitator
Hi, I am new to this site also. I had a WLE on 22/12/11. My lump was just behind the nipple, which I have lost. I can honestly say that with my bra and clothes on I don,t see any difference in size. I was 36B before, so not that big. Obviously you must make the decision which is best for your future health. I go for results of SNB tomorrow which is the scariest bit of the process yet for me. I wish you well in whatever decision you make.
Ladies
Thank you all for your support and comments. Pinot - hope the results of the snb were good. I have spent a lot of time reading and reseraching the options, as well as talking to friends who had and had not had breast cancer and my OH who is being a complete rock. Through searching DJ007’s posts I found a link to a great book written by a breast care nurse and oncoplastic surgeon. I also kept in touch with my BCN at the hospital and eventually constructed a document which outlined what I understood my diagnosis to be, ( not at first fully explained,) what my priorities were ( which took me some time to understand,) and what I thought the options might be plus questions. Clearly I am one of those information seekers!( I have to say that part of this process involved a private consultation with the hospital consultant just before Xmas which the GP suggested.) Out of all this has come the suggestion that as a first step we try WLE and my surgeon is going to try to leave the nipple although he will take a “slice” from behind to establish if there are clear margins plus SNB - the surgeons view is that in terms of cancer treatment I am borderline between mx and wle plus rads. So after taking a night or two to think about it, that is what I am going to do as a first step, accepting that if margins aren’t clear etc., I may have to go back for more surgery, but at least we have tried a breast conserving approach. I am encouraged by the info (thanks) that a lumpectomy at 34B didn’t leave a noticable difference.
I have also come to appreciate that there is a difference between a breast surgoen and an oncoplastic surgeon and that it it really important to know what your consultant is as it affects the options he might offer, and that questioning sometimes elicits possibilites not there in the 1st instance. A hard thing to do when your emotions are all over the place, you are scared and feel under pressure to make a decision.
I think I will have surgery next week, and the reality of that is now sinking in, but thanks to everybody
Hi Oakleaf
Glad that you have come to a decision that’s right for you.
Good luck with your surgey and the rest of your treatment - do lest us know how you get on.
Dx
Hi Oakleaf, i had the same decision to make & boy was it a hard one. I finally decided on a WLE after a long discussion with my surgeon. I had to go back in to get clear margins but would have had to go in again anyway as i had to have completion ANC due to micromets in my nodes. The re-excision was no problem, they just went in the same scar & i had no pain from it. I dont regret my decision at all, my boobs are quite big but the differnce is not very noticeable even wth two ops. My surgeon said that if im not happy with the shape she could do something about it, think she said lipofill or something but to be honest im not going to bother as they look fine. Glad u’ve come to a decision,its a personal choice & everyone’s different, good luck with your op, hope all goes well, let us know how u get on x
Had my wle and snb on 12th Jan and am now home resting in bed for weekend while OH runs around. Found the whole hospital thing pre op totally traumatic and nearly ran away rather than go into theatre. Now feeling very swollen and sore, boob blue from the snb, ( which is sorer than the wlx,) black from heamatoma / bruising and swallowing lots of painkillers. Have yet to get a decent nights sleep. Can’t tell what end result will look like and go back next week to find if I have clear margins on the wlx and nipple slice and clear nodes, so don’t yet feel as if the cancer is gone. Totally dread the thought of more surgery.
Just to let anybody know who is in my position how things have turned out. I am now 16 days post op and the news so far has been as good as I could have hoped. Margins were clear, lymph nodes were clear, and nipple slice was clear, so no need for more surgery,and I have kept my nipple despite the tumour being so close to it. There is still some minor bruising and tenderness, but it is much better - the sorest place is still the site of the snb.I also have a lot of numbness to the breast ( unexpected) as well as the nipple (expected). My surgeon left the stitches and dressings for 2 weeks, so I only got to look at things 3 days ago, and I find it hard to work out exactly what he has done, although he did say to me that the bruising was an indication of where he had been - ie all around the whole breast area repositioning tissue I think. At first sight in the mirror I have two pretty well matched breasts, ( although have lost some areola on the operated one- I think because the surgeon took a small amount of skin out and repositioned the nipple.) The shapes are slightly different but not noticable in clothes or bikini top or bra, and I suspect only to me undressed because I know what I am looking for. I have incisions partially around the areola and under the nipple but I think they are going to be almost invisible when healed.
My treatment for now is 4 weeks radiotherapy, plus tamoxifen. Still waiting for the results of SISH test to find out if I am HER2 positive or negative, but am being told that even if positive benefits of chemo would be small but I should discuss them.
I am so glad to have gone for the surgical option I did. In the last week I have been taking children to school, driving and doing normal things- altho’ a bit sore and still taking ibuprofen and trying not to overdo things.
Just hope the rads won’t change things too much - my surgeon says he thinks it won’t and he has been right so far - so fingers crossed.