Diagnosed in Jan 2013 I have had 3 WLE’s. Asked for mastectomy after 2nd WLE but was assurred most positively that there was no need as the 3rd WLE was to remove a 4mm DCIS (a dot - to quote the Registrar). Went for results today, slightly confident all okay but only to be told I now need a mastectomy. Had the Consultant listened to me I would have been on th road to recovery now instead of going through lots of anxiety, false and raised hopes. I now have to consider reconstruction which the Consultant says is ‘ongoing’ surgery. At the moment my first instinct is to refuse reconstruction as I just want to be free of hospitals and all the worries and fears. Anyone care to advise?
Am seeing the Consultant to talk through it all as well as breastcare nurse.
Is it normal to have the lymph nodes scanned (is it Sentinel Nodes Biopsy?) before surgery or have I something else to worry about? I have had ultrasound of the nodes in February before my first WLE. and all seemed okay then.
Hi Diamondlady, I am sorry to read your post. I have been through a bit of a similar experience. I wanted a mastectomy as well, but had chemo first, as was told they were confident that the chemo would shrink the lump down to nothing and I would then be able to have a WLE. Well, chemo didn’t work as they had hoped and lump did not shrink as expected. I had two WLE’s and a full lymph node clearance (FNA identified micromets in 2 nodes initially). I still did not get clear margins and am now recovering from a Mastectomy and immediate DIEP recon which I had beginning May. I am pleased that I have had the mastectomy - path results yesterday post op confirmed more areas of DCIS (some close to chest wall - 2mm). I am slightly hacked off that I didn’t have it in the first place as it would have saved me several surgeries. I can understand your frustration. Some surgeons are very conservative and want to do minimally invasive procedures. I think it is only if they can’t get clear margins, or if they identify multi-focal areas, or you have a strong family history, will they push you for the mastecomy.
I am pleased I have done it and also pleased I had the recon immediately. I di not want more surgery, but also wanted to retain some part of my feminity. I was lucky to be able to get an immediate recon. I am not sure about the Lymph Nodes. As I had chemo first, and the FNA prior to chemo identified two nodes, I had to have all of my nodes out during my first WLE. This is because chemo scars everything and they can’t be sure with certainity, That’s my hospitals protocol anyway. I had two ultrasounds prior to the FNA and nothing showed up on these re: the lymph nodes. My oncologist thought he found something when he did a physical examination hence I had the FNA. I think it is standard procedure though to do a Sentinal Node Biopsy when they do the mastectomy. However, someone may be able to give you better advice on this, I have to say that the full clearance has been a lot worse than all the other surgeries and the mastectomy was a breeze compared to anything else. I am relieved that I have had the mx done. I am still not reasured that the cancer is gone - I don’t think anyone ever truly feels it has left them. Although I trust my surgeon when he says he got it all, I still worry. So I think going with the mx was definitely the best option - if only if it gives me a bit more peace of mind.
I would suggest you look at your recon options. My understanding is that if you have the mx, sometimes its a long wait (9-12 months) for the recon - which may be too long for you. Consider all your options first. Good luck with the next op and the rest of your treatment. All best wishes Emma
Hi diamond llady slightly different but I had 7cm high grade dcis so had no choice but mx straight away 5 weeks on and I’m doing well. I had 1 mode with a micro met and second one clear so they have left the rest and I have been given the all clear.
I did not go for reconstruction as I just wanted out of hospital and the way my hospital take the muscle from the back meant I would never play netball again and at 32 I was not happy about this. I also was advised more like there reconstructions if they leave it a while but it really is a personal choice
Thank you Tonsky and Spookymoo - I really had a real tearful session this morning. I feel that as I have been ‘let down’ by the results that eventually the cancer will get me. I am told the DCIS is still non invasive. Have requested the 3 copies of my Pathology reports. Seeing Consultant on Wed and possible operation on 25th June.
Hi Diamondlady
I was diagnosed with breast cancer in Jan 2009, high grade DCIS. At first was told a WLE and SN biopsy, in Feb 09 had first op, back 2 weeks later for results , not clear second op March 09, still no clear margins they were going to have another go but as I only had half my breast left I insisted on a mastectomy (I had asked for this in the beginning but they thought there was no need). On April 23d 09 I had my mastectomy and reconstruction, after the emotional roller coaster ride it felt a relief. I have had a nipple construction & tattoo done, it was a rough ride but hopefully all sorted. Hope all goes well
Divipops x
Many thanks Divipops - I am having a real bad time emotionally. I really think it would have been better if I had the mastectomy straight off so that I don’t have this turmoil repeated again and again. I do hope the mastectomy will put an end to this. Great to hear success stories.
Hi just reading your post.I had snb which was clear and wle 3 weeks ago.10mm and 6.5mm were removed along with dcis in the middle of these.I just got results and no clear margin on one side .like you I asked for mx and was told by 2 surgeons need another wle.I’m just prefer to nip it in the bud and have mx.,but no got to have wle they said it’s a 2mm area but I’m panicking in case it isn’t and there margin was justvstart of another lump.could you give me your experience and views on clear margins.I’m same frame of mind as you and want mx,but keep being told it’s unecassary .Gud luk ta
Hi Amanda, Apologies not replied sooner. Had my mastectomy on 2nd July, discharged on 3rd (my birthday). Bad time esp. emotionally. When I was first diagnosed, everyone seemed optimistic, saying a WLE would do it. Words cannot describe the last 4/5 months. After the first WLE I was told by surgeon nothing to worry, just another bit cut out. After the 2nd and to be told I needed a third WLE shocked me, I asked for mastectomy but he was adamant no need for it. He said just a tiny dot and then there might not need to be radiotherapy etc. When I got home I contacted my BCN about poss. of MX but somehow along the line I was persuaded another WLE was all that was needed.
I do understand the clear margins required and mine was High Grade DCIS but what worries me is, what if the affected DCIS is away from the clear margin at the time of my WLE, and therefore I would appear to be in the ‘all clear’ when there is still this awful thing lurking, which was why I wanted Mastectomy from the start. I am not ,medically minded but do wonder if this is why some DCIS recur, when in fact it was there all along but somehow did not appear within the margin. I hope anyone reading will understand what I am trying to say.
I even felt slightly confident when I went for the results after the third WLE, only to be told I now need a MX. Had I been more assertive and opted for mastectomy after the 1st or 2nd WLE’s I would have certainly gone for an immediate reconstruction but when told I would need ‘ongoing surgery’ I decided against it. Now 5 days after my MX there is 40% of me that wished I had gone for a reconstruction. Believe in what you think is right for you. I talked to lots of people in the same situation.
Hi all,
I had a WLE and SNB on the 5th June. Unfortunately they found another stattilite area 6mm aswell as the 22mm tumour (high grade DCIS and iinvasive grade 2), didn’t get clear margins also had it in 1 lymph node and have vascular invasion. I am having 2nd WLE on Wed 10th July but I have decided that I will not have anotehr one if they do not get clear margins this time. i will stick to my guns on this but hopefuully the 2nd one will be a success.
I’m a bit puzzled, too, as to why some consultants are so confident they can keep on doing WLEs until they get clear margins, and apparently disregard their patients’ concerns, and in some cases, wishes.
I was given the option of chemo to shrink my large tumour first, or opt for an mx, which I did and have not regretted it. I didn’t want that lump in me for any longer than it needed to be, and as it happened both the nodes they removed at the same time were infected so I had to have ANC afterwards.
I know we have to trust the experts to a degree, but it must be so disheartening to be told not only once but twice that the op hasn’t succeeded in obtaining clear margins, and you have to go through it all again - my heart goes out to you ladies and I hope for good results next time for all of you.
Annie x
Hi hope your op went well and you have a speedy recovery.3wle’s and months of wasted time and worry but now at least you got what you want.justvhoping for clear margin next time .get well soon amanda
Hi ladies this post has really touched a nerve with me . I was initially diagnosed with IDC grade 3. Had WLE , all of IDC removed with safe margin. However, DCIS high grade discovered in the margin of IDC and need a 2nd WLE to get safe margins on 2 sides of the DCIS. SNB showed no spread. I have had to wait 5 weeks for 2nd WLE, so original scar cleared up nicely, only to be re-excised, but that is the least of my worries. This DCIS seems to be an unknown quatity to me. According to my BCN it’s a simple shave and then I get my treatment plan. Can’t stand waiting between dx , surgery and now more surgery. It’s 4 or 5 weeks each time. My 2nd WLE is next week and if that doesn’t get clear margins I think I will be on here asking for advice re MX. I really don’t understand DCIS, why didn’t it show up on ultrasound and Mammo ? Is it because it was close to my IDC ? How are you all getting on ? Chillipink, what did you decide to do? and Diamondlady how are you these days? I would welcome feedback from all you ladies above and anyone else who has something to say. Thanks Kathy
Hi ladies, There are some questions in the thread that I have recently asked my BCN. I was diagnosed with High Grade DCIS last year, had WLE then 5 weeks later a re excision to get clear margins. I was told they had and I then had a course of radiotherapy. At my 1st annual check up 8mths later they found an area of DCIS in pretty much the same place which after a biopsy was found to be high grade again with micro invasions. I wasn’t given the opportunity to have a 3rd WLE. My only option was a mastectomy which I had on 23rd July with an immediate recon. Got my results today and luckily it was as thought, all excised and no node involvement. When I found the DCIS had “returned” I was totally shocked and couldn’t understand how this had happened,to my mind, so quickly. My BCN said what has probably happened was a tiny dot wasn’t detected last year and wasn’t zapped by the radiotherapy. It must have been pretty small because I had so many mammograms and ultrasounds last year during treatment. How big does an area have to be to show up?I know I am lucky it was found in time on both occasions, I am recovering well from my op and have a great recon -LD flap(if a bit swollen at the moment). I don’t know what I would have done if last year I had had to have a 3rd WLE. I think I would have argued for a mastectomy and hope I would have had the same recon. As someone said above you have to go with your gut instinct. I do know that if this happens again in the other breast I would very carefully consider having a mastectomy straight away rather than go through the ups and downs of the last year. Helen
Helen, finding an area of DCIS months after 2 WLE and rads sounds a scary experience. Very pleased that your MX and recon have been sucessful and hope you continue to make a good recovery. It would appear that DCIS is harder to detect on Mammograms and ultrasound. (Correct me if I am wrong). Like you I had an area of high grade DCIS, but unlike you it was attached to 1.8 cm of IDC. I am more than grateful that the IDC has been removed and my nodes are clear but I now have anxiety issues about the DCIS and in my mind believe that the IDC could have started off as DCIS. I had an all clear mammogram 18 months prior to the IDC lump being found and he radiographer said it had been there for some time. If the 2nd WLE does not get clear margins I am opting for MX. I will speak to my consultant when I have my 2nd WLE on Tuesday. (Left a message for the BCN to return my call on Wednesday…no response). Kathy
Hi diamond lady and bowl of cherries.like you I had 1wle which removed 10mm and a 6.5mm with dcis in the middle.initially mammogram picked up one 7mm ,it hadn’t picked up dcis or the 10mm lump.it was only after the wle and I got results that I was told she hadn’t got clear margins on one side and she though it may be a satellite of 2mm.hence I had my 2nd wle a week ago.my surgeon had got me 2 oncologists opinions told them my case and they both recommended another wle.so I thought ok 3 oncologists recommending another wle I’ll go with what they say .my surgeon told me she has removed more breast tissue than she needed to and I’m a cup smaller so I will just have to wait another week.for the results and pray to god it’s clear this time.it concerns me same as you bowl of cherries that a lump never got picked up and dcis never got picked up on the mammogram and the worry is is their something lurking in there I hope not and it was just a case of reexcision and cutting a slightly wider margin she also told me that if it isn’t clear I will have to have a mx.so fingers crossed for next Friday.
I am due to have a third WLE next wednesday for DCIS. At the first operation they removed 17mm and at the second they removed an additional 13mm making 30mm in total. I went back for the results last week to find that they still hadn’t got clear enough margins and I need a further operation. The surgeon did say that this would be the last WLE and that if they couldn’t clear it this time I would have to have a mastectomy. I wasn’t given the option of choosing a mastectomy and did not really think about this whilst in the appointment. But since then have been thinking that I should have discussed the pros and cons of going for the mastectomy straight away instead of another WLE.
I also have had a WLE for ia 33mm invasive cancer in the the other breast which was removed in one operation so would ask for a bilateral mx and reconstruction should they advise a mastectomy for the one with DCIS.
I must admit I am worried about the amount of tissue they have or will remove and the effect this will have and am beginning to think that a mastectomy would be the best plan but I do think that the surgeons these days feel that this is a negative thing and somewhat of a failure on their part.
Lets hope that for all of us facing re excisions that they are succesful this time!!!
Hi all, I have just found another older thread from women who were faced with similar difficult decisions around DCIS and surgery/treatment. breastcancercare.org.uk/community/forums/dcislcis/dcis-masectomy-v-lumpectomy-wle
Are we the exceptions? Do most DCIS alone or IDC with DCIS women undergoing surgery not have this type of problem? Are the majority of WLE for DCIS successful the first time round and we just don’t get to hear the good news ?
My 2nd WLE is due Tuesday. My BCN did not seem too overly concerned about getting a wider margin on the DCIS, she said it will be a further shave in the same area to get a wider area on 2 sides. At the time I was just happy the IDC was out with clear margins and no node involvement. That was 5 weeks ago and I now just want all DCIS out and clear margins . I can then start the rest of my treatment !
i was diagnosed in May with high grades DCIS in May - around 4cm in right breast. Was given the option of mastectomy or WLE with immediate reconstruction to both sides. My BCN did say that if they didn’t get clear margins they would have to shave a bit more. I opted for WLE etc and had the op on June 5th. 3 weeks later got the all clear. It was said that because I was having immediate recon on both sides, the surgeon could afford to take a little more tissue if necessary without affecting the overall outcome. There was no definite size guaranteed beforehand. I was a 42D and she suggested I would be a B/C after, so obviously it gave room for manoeuvre once I was on the table (so to speak!)
I am now on the 2nd week of 5 weeks rads, still sore but coping. But all in all I have been happy with my outcome. Hope this helps others. Incidentally I am led to believe that WLE with immediate recon is not offered to everyone as its not suitable for smokers or people with smaller breasts.
Take care and if I can be of further help message me
JF
Hi Kathy, I am very well and sometimes forget what I have been through. Obviously no one wants a MX but I only wished I had gone ahead with it after my first WLE. Like you said, all that anquish and waiting. I was diagnosed on 18th January and got the all clear from DCIS (turned out there was about 10cm of DCIS as opposed to a tiny dot as described earlier) on 17th July. If anyone were to ask for my advice I would suggest go for MX if the first WLE fails. Alot of people have remarked how much better I am looking now, thats because the fear has gone.
Good luck to you, Chillipink and any other ladies in this predicament.
