Good Evening. This is my first post here. I was diagnosed last week with high grade DCIS in an area 4cm across and so far am thinking of having lumpectomy and radiotherapy. They have said that because i am ample breasted (!) that i can have immediate reduction to tidy up the scar and identical to the left to match. As im sure you have all been through, a lot of soul searching and research is going on. Some of my research says that there is no guarantee that this DCIS will automatically turn into cancer so this is putting doubt in my (and my husbands) mind of the absolute necessity of this surgery. some research says that over treatment is happening and maybe a watch and see approach would be better. I suppose my question is that is there anyone out there who has decided against this very radical treatment and been ok? Lets face it, once its done you cant turn back, but are we given a choice? The only choice given to me is mastectomy or lumpectomy, both came as an almighty shock.
i hope no one is offended by my question. I just want to make sure i have looked at all the facts before going under the knife.
Hi Jasmineflower and welcome to the BCC forums
Along with the support and shared experiences you will soon have here, please feel free to call our helpline on 0808 800 6000, lines are open 9-5 weekdays and 10-2 Sat and our team can talk to you about further support services from BCC such as our ‘One to one support’, you can read about this and more here:
http://www.breastcancercare.org.uk/breast-cancer-services
BCC have a publication about DCIS which you may find useful to read:
Take care
Lucy
Hi,
Of course the decision is entirely yours, but please don’t make any decision until you have all the facts on your own specific diagnosis from the experts ie. the breast specialists looking after you, not from websites that may be out of date or even wrong.
I was diagnosed with grade 3 invasive ductal but after my lumpectomy they discovered high grade DCIS surrounding my tumour and extending a bit further. The DCIS wasn’t picked up on the initial scans. It was explained to me that the DCIS came first and had begun to change into invasive and broken through the duct wall into the tissue. High grade DCIS is likely to do this I’m afraid (although probably not always, and may take some time). It’s the luck of the draw. I was recommended to have a second op to get the rest of the DCIS out, and fortunately this second op was successful. My boob looks perfectly normal apart from a neat scar above the nipple, but my tumour wasn’t as big as yours.
Personally, I would be taking no chances. I would rather be cancer free with a mis-shapen boob than have lovely boobs and have to live with the fear of something sinister developing later.
Good luck with whatever decision you make, xxx
Hi 
, sorry you are in this position but you are very welcome. Last Nov I went to the hospital for treatment for an abcess on my right side and was told i had 2 possible areas of DCIS on my left, not quite what I expected. I spoke to the nurse about having surgery as it was all such a shock, she said that it would take at least 1000 women to say they would wait and see before they would have conclusive evidence that you could really take the chance of leaving a DCIS. I went home and gave it a lot of thought and then decided I wasnt brave enough to be one of the 1000. I know that even now after surgery and radiotherapy there are no guarentees but I wanted to be as safe as I could for as long as I can. I watch my mum die from breast cancer at 59 and as I am 54 I didnt want to get to my destination earlier than she did. It is a big decision to make but life with a mishapened boob is still life and in a bra I still look OK 
. Think hard about your choices and what is really important to you coz it is you choice to make
Hi
I was diagnosed with DCIS three years ago and there was only one decision for me I opted for a mx right away I wanted to give myself the very best chance from the beginning I only had 5mm area which was non invasive and no node involvement. This was my decision not the surgeons I feel that I have the peace of mind that it won’t come back and was able to move on. I have not have a reconstruction as I do every thing now that I did before Gym, Walk and play squash for a ladies team. I wish you luck in what ever decision you make.
Suziex
Hi. Thankyou for reading my post and taking time to reply. Ultimately I think there is no question about whether I will have the surgery. I was just interested really in others opinions. I feel so overwhelmed by the whole unexpected episode about to be thrust upon me. Currently I have a massive bruise from the biopsy that I had nearly 2 weeks ago that doesn’t seem to be fading. I showed my husband last night and he was so upset about how mauled I seem in that area. I suppose it makes me feel violated. Sorry if I’m ranting, just trying to come to terms with it all.
Hi thank you for reading and replying. I am doing my research but ultimately it has to be either Mx or lumpectomy. That’s the decision I have to make. This Friday I go to a reconstruction clinic with my husband to talk about the various ways of recon. I’m just not sure. If I have lumpectomy I’m worried that any ducts remaining could also be affected over time and I have to go back in… Mx just seems so final
Hi again, there is no easy answer to any of this and I am afraid life will never be quite the same. I had 2 biopsies done at once and then had to have one repeated and they were more painful and the brusie lasted longer than the resulting surgery. I have worked thoughout the treatment (had 10 days off for the surgery). It was a crazy 4 months, I did not invlove my husband very much as he would not have coped but now we talk about what happened and the future. It is invasive and can look as if you have been beaten black and blue but this will all come to an end and you and your husband will be stronger people for it
HI Jasmineflower
I can only echo what Lola and Deb2307 have said. The decision is ultimately yours and you have to make the best choice for you.
After my biopsy, it took over 2 weeks for my bruising to go away and even now, I still get shooting pains through my breast, which my BCN said was totally normal. Even to the point that I thought I felt another lump yesterday however, yet again she said that the area would still be a little swollen and there is nothing to worry about.
I didn’t have a choice, I was told that I would be getting a lumpectomy - I am to have this on Friday 3rd May. I am going to tell my surgeon that if he feels that 1mm margin isn’t enough then he needs to take more (although I’m sure he knows what he is doing). I am 42 years old, I have 2 amazing children (my daughter is 7 and my son is 13). My fiance has been a total rock since this all started and he has been with me throughout.
We have spoken in detail about my boob being deformed and we have both agreed that no matter what, we can live with the deformity, just as long as everything is removed. Even if I have to have a mx, we will get through this together. My lump is a 3cm grade 3 invasive so I’m all for taking everything away but because I’m a D cup, my onc feels a lumpectomy is best for now and that he will shuffle the remaining breast tissue around so that it doesn’t look too bad. I will also have a SNB at the same time. After the op, I am to receive RAD and then tablets as I am hormone receptive but I won’t know the finer details until I get the path report. I have also been told to expect conversations around chemo. Although the chemo would potentiall be a few months away (I suspect), I am preparing myself mentally for what I am about to go through. When I was initially dx, I was actually expecting to be told it was a cyst and that would be that however, when the news came that I had BC, my life spiralled out of control for about a week. This is why I’m mentally preparing for chemo now. When that discussion comes, I will be prepared.
Ultimately, you have to speak with your hubby and ensure you are both making the right decision together. But the final decision must be yours.
Good luck and please let us know how you get on.
Take care
Martha xx
Hi,
After having 10+ cysyts drained or removed over the past 30 years I was devastated when the last one turned out to be a tumour. My initial reaction was MX and I even begged the surgeon to do both sides. Luckily for me he talked me into having a WLE as he said I could always have a MX later if I really found I couldn’t cope with the thought of the cancer coming back or indeed if it DID come back. The scar is about 3 ins long and very neat and will fade over time. By having SNB my boob is still blue 4 months on but again that will fade (its the dye they use to trace the lymph ducts). The boob itself is a bit wonky looking but once I’m dressed it’s not noticable.
My OH really made my mind up by saying that if I had a WLE first I could fall back on the MX, if I had the MX first I had no options left.
Please don’t google and read everything you find. The American sites in particular are scary and mostly out of date. Talk to your OH as much as you can, read & join the forums here on BCC and if you are still undecided ask to see your surgeon and BCN again. They are there to help you.
Whatever you decide I wish you the best of luck.
X Yvonne
Hi, I was diagnosed in January this year with High Grade DCIS and have had 2 WLE’s and another one scheduled for 29th May. Each time I was assured they have got the safe margins but pathology reports show not . This time I asked for a mastectomy but the surgeon persuaded me this is not necessary. I feel scared, drained and mentally exhausted. Had to cancel my USA holiday once already so have asked if I could have my holiday and the surgery on my return as I feel I can face things better. Surgeon assurred me this should be no problem whatsoever so am going away on 8th, return on 26th and WLE (hopefully last time) on 29th. If safe margins still not achieved I shall definitely ask for a mastectomy as I don’t think I can face another surgery, 2 weeks wait for result only to be disappointed again. Operation itself is no problem and the affected breast looks real good, even after 2 WLE’s but one scar.
All the Best
Diamondlady
Hi again. Thank you to everyone who has read my post and replied. I have people around me who say that i am storing up trouble by taking part in these forums and doing so much reading. Particularly my Mum who just doesnt want me to worry (bless). But for myself it is helping me make an informed decision, although i have come to the conclusion that in the end it is a bit of russian roulette and you have to take a chance on whatever best information you get about your particular set of circumstances instead of worrying about what ‘might be’. I have an appointment at the reconstruction clinic on Friday where i will get more info about the reconstruction options should i choose to go down that route. But so far i am erring on the side of WLE and radiotherapy. I have been told (by BC nurse) that not everyone can be offered this route and that my prognosis is the best it can be. I am taking comofrt from that instead of thinking the worst.
People tell me that i am remarkably calm about it all, but being an organiser i am treating it as just another project to be organised. and that is enabling me to stay together. I will probably be like a jelly after, but for now im fine. I have a holiday next week, then surgery shortly after. Will keep you posted.
Thank you for all your good wishes. My best to you all. Onward and upward!!! Lol
Hi Jasmine Flower, I took the same approach, several years ago I had an op on my knee and I treated the BC as the same, everyone including the oncologist keeps saying am I OK as I am just getting on with what happened and the follow up. We are all different and deal with things in different ways but I wasnt about to let cancer take over my life and dictate how I would feel and what I could and couldnt do. Where I work have been supportive but I just wanted to get on with life and be treated the same and it helped me. When I had my op done they did a quick check on the margins whilst I was still under, they were not happy so took a bit more there and then. As I said before I might not win any topless competions anymore but I am here still making my staffs life hell and keeping my husband in his place so I am happy. Good luck with everything XX
Hi Folks. I must say I am feeling like I have a bolt hole here to share my trials and thank that for that. I am feeling surprisingly emotional today. Went to reconstruction clinic yesterday, got a date for op on 5th June, but my goodness what doom and gloom! I met the consultant and she was very blunt. Up till now the BCN has been extremely positive and made me feel very confident about my options. All of a sudden the consultant zapped off some of those options because of my ‘body shape’! She also was grave about possible recurrence and my lack of options should it recur. Basically if I have to resort to Mx then I’m not suitable for implant or using stomach flab! Lol. 
it all sank in and I felt down for the rest of the day…
Today we are off on holiday for a week with the caravan but I can’t shake this doom n gloom feeling. To be honest while I am working I can keep it together and carry on managing it as a project. But oh dear I fear for this holiday as its supposed to be your opportunity to wind down… Also no access to Internet so I can’t get in here. Got loads of books, novels, to read so got to try and shut the compartment for this week and not fret.
Anyway, best wishes to everyone. catch up on my return xx
Hi Jasminflower… I had DCIS grade 3 72mm (discovered in routine mammogram) but they didn’t give me any option other than a masectomy. I too read about the necessity of surgery for DCIS - and in my mind wanted to do nothing but went along with the ‘professionals’ and I’m glad I listened. I was then told I’d need a SNLB too - I remember this shook me as I didn’t realise that would be necessary in my case with DCIS. I’d also settled on DIEP reconstruction after spending ages reading the literature and then told I didn’t have enough body fat (can’t beleive that) to make a C cup - and my breast size suits my frame so the option to reduce wasn’t viable (in both my surgeon’s and my own mind). So I had an implant… which I’ve been happy with (and I was told if I want to go back for a DIEP in the future I can). Every step along this journey you have to re-evaluate as the information changes. At the beginning I ‘only’ had DCIS so breast off and problem gone. Unfortunatly they found IDC - HR-/HER2+ so I’m facing chemotherapy and Herceptin now. On the positive side the decision to remove the breast (for me) was absolutely the right one. Listen to your healthcare team, whatever you read in the media I truly believe they are on your side and absolutely have your best interests at heart. I’ve blogged about the DCIS journey multigen.blogspot.co.uk/ - keep in touch. Good luck with whatever you decide, it will be right for you, and that is all that matters. Love, Lins
Hi Lins. Thanks for taking the trouble to reply. Yes it’s all so confusing. I have had 4 different versions of what bra I need to take in hospital with me! Agh!
JF
Well my surgery for WLE is looming (June 5 th). I am having WLE on one side of 4cm with immediate reduction to improve the shape of whats left and a similar reduction to the other side to even me up! I do wonder though why they have offered me this immediate cosmetic surgery procedure at the same time if there is a chance they might have to go in again to take more. Or indeed if they find any invasive cancer.?
So far I feel quite pleased that I have held it together. I’m a person who doesn’t want any fuss and will quietly deal with each step as it comes. I have a 25 yr old daughter who hasn’t really asked very much and I have given her the basics but left it to her to ask anything. I saw her yesterday ( she was a but tipsy after a birthday drink with mates) and she sobbed telling me how scared she is and wants be at the hospital in case anything ‘bad’ happens. Turns out her dad (my ex) has been filling her head with ‘oh they don’t do all that treatment if its not bad!!!’ She’s now convinced I’m going to die and I feel like I’ve handled it badly by not giving her precise details earlier. My view is youngsters don’t need every minute detail, they should live their lives free of worry until its their turn. Am I wrong? I told my family from the outset that I didn’t want pity upset or sympathy because that will make me feel that I have to look after everyone else, which is my style. I have to look after myself. Now I’m panicking that I need to get to her before next weds to give her all the facts so she doesn’t panic. Flipping eck
Sorry to rant but its worried me all night. Also I suddenly feel scared about the op AND the future when up to now I’ve been fine.
JF
Help! I’m so confused about what bra to take in hospital when I have my WLE on weds? I’ve had so much confusing info from BCN pre op nurse and consultant. At moment I am 42D but been told by surgeon to bring B AND C that I have had to buy. BCN said donbuy we but if you do, go to Asda and buy cheap. I would have thought I need supportive bras and cheap ones aren’t that! Per op nurse told me just to take wires out of existing bi have ended up sending for £100 worth to try various ones but I’m not confident
Can anyone give me advice who has been through it please???
j x
Hello Jasminflower,
Waiting for your surgery is a tough call, so much running through your head, its hard sleeping and keeping it together.
Sounds to me as if your daughter is perfectly natural in her fear and needed to tell you she wants to be there for you, and how lovely is that?
Re the dreaded bra panic - I went through exactly the same, although I had a MX with DIEP left side, I got more bra sizes waved at me and nothing seemed to make sense - its seems you just might have everything covered with your purchases though 
You will have some swelling so size will change as you heal. I opted for wire free soft cotton bras from Bon Prix as they are inexpensive - ironically I’m back in my original bra size now!
Wishing you all the very best for your surgery and beyond
xx Suzy
I’ve been away on hols… So sorry not replied earlier. I don’t think anything you can do is ‘wrong’ you do the best you can do in a situation that is new and frightening. You have her in your heart, and your daughter will understand that. I can’t comment on the bra as had MX and they told me to take sports bra in, same size as I was originally. Keep positive xxx