Hi
Am new to this, having being diagnosed with what I think is high grade DCIS in a lump of 1.8cm. This was removed before Christmas, but unfortunately the surgeon didn’t get clear margins. He thinks that it wouldn’t be necessary to have a mx, but would understand if I wanted to do that! I really don’t know what to do. Like everyone else, I am so worried about it coming back so part of me thinks there must be so much less of a chance of it coming back with a mx, but now the time is getting closer, the prosopect of having my breast removed is quite daunting. Just wondered if anyone else has faced this, or is facing it now?
Hi Nels,
Welcome to the Breast Cancer Care discussion forums, you’ve come to the right place for some good, honest support from the many informed users of this site.
While you are waiting for replies, could I suggest that you give the helpline here a ring and have a chat with one of the staff, they’re here to support you through this. Lines are open now until 5pm tonight (Mon-Fri 9-5 & Sat 9-2), calls are free, 0808 800 6000.
Hope this helps. Take care,
Jo, Facilitator
Hi Nels,
Its awful to find yourself on these forums, but nice to read you are joining us, as most of us are on same road together been diagnosed the same with BC.
Yep i understand how worried you are as i was faced with same decision as you,
surgeon made my mind up for me, what he explained was there could be a hidden cell, damn glad i did i also asked for my path report after having lumpectomy which i studied as 5 margins was involved i
had MX on dec 1st, op went well, the worst part is thought of loosing ones breast, still blubbering over its loss,and how i look now which is very upsetting i am sure in time i will accept new me this is what we all do, also you in time.
I thought how unattractive i will be OH said to me he loves me no matter what or how i look, he has seen what it looks like, i prefer to be more modest now, my way of coping not age to want to show off anymore too many wrinkles.
To make myself feel better looked at a lot of very nice lacy mastectomy bras in lovely colours, i wear one from M&S with softie at moment until i get prothises made me feel so much better helped to keep me positive that i can still look good.
Decision you make will be best for you, i am pleased i did have MX
there is a helpful thread on MX in December lovely ladies who has there ops.
Take care Pat xx
My dilema too last year, but I didn’t speak up in time. I would have liked a mx, but had a re exision and had clear margins. I think if it ever arose again, I wouldn’t hesitate and ask for a mx.
I went for a second WLE just before xmas…waiting on results !! I had same fears as you but BCN discussed it through with me and said they were doing all possible so that no cells survived.
Lets see what the results bring…could still be MX this year after all 
Hi
Thank you everyone for your replies - I am so glad I plucked up courage to come on here. Everything crossed for you madgse62 for your results! I think my op is on Jan 13th - the surgeon said just to let him know before he starts!
I didn’t get clear margins after WLE for Grade 3 IDC, and went for a re-excision. My surgeon said that even after that second op, if there were still no clear margins she would be happy to go in and have another go.
For me it was the right decision to keep my breast, even though I had IDC. In the re-excision she found further DCIS and also LCIS, but with adequate margins. If there had still been unclear margins I think I would have gone for another re-excision. I then went on to have chemo and radiotherapy and am on Herceptin and Tamoxifen, so I feel that I’ve had lots thrown at it, and mastectomy is no more effective than WLE+rads, according to my surgeon.
I feel that I saved myself from further major surgery with a reconstruction which was the right decision for me, but you are the only person who can make the decision that is right for you.
Good luck in reaching the right decision for you.
CM
x
It’s so hard when we get chucked in the deep end with this and have to learn to swim the BC stroke so fast!!!
While I waited for my biopsy report I wondered what decision I’d make. In the event the BC recommended a mx as DCIS appeared to be in two areas… They didn’t biopsy the second area but assumed it was the same.
I went along with the decision because having a mx avoided the need for rads or possible further wle to get clear margins.
I WAS horrified at the idea of losing a breast and being mutilated, I really had a bad weekend of howling and sobbing!! Anyway, I decided to go for a DIEP recon at the same time as the mx, and I’m now six weeks post op. The DIEP method felt to me like having my breast emptied and refilled rather than " losing" the breast a I’d feared. I’ve got a skin graft from my lower tummy in place of the aerola skin, but no other scars or wounds in the breast area.
As it happened I came out of hospital on the same day as two ladies (who had their snbs at same time as me, then had WLEs) finished their rads at the same place!!! It’s funny how things work out. I’m sure things will work out for you and you will mke the right decision. Lots of love, nonsuch
Hello Nels, As other ladies have said the final decision will be yours, but this is what happened to me. Had 2 WLE for high grade DCIS which I had been told I would need Radx for. However, they failed to get a clear margin on the second op. my BS told me this and that I would need a mastectomy and “of course you will be wanting an immediate reconstruction”. Decision made for me and I believe it was the right one. Would I have worried that they would have missed some cells, if I had had a clear margin with the 2nd op? who knows. The other thing that niggles at me is that, it may not have escaped from the ducts. Being the higher grade they say is the grade most likely to.
Now I’ve had a DIEP I don’t need further treatment. xx
Hi Nels, as already stated the final decision has to be yours. I was told at diagnosis end nov that I would need an mx as my dcis was in two different areas and quite large. Although difficult to hear I have accepted it. I saw my consultant today to get my results of my SLNB and he gave me another option of a WLE as I have bigger boobs and he knows I am keen to retain as much as possible. However, the more we discussed it, in my situation, it became clear that the mx should give a 96% chance that there is no recurrence vs a less positive outcome from the WLE without repeat ops so I opted to stick to the original plan of the mx and immediate recon plus a reduction of the other in 6 months as that would give me peace of mind which, for me, is more important. I also couldn’t personally face the chance of repeat ops to get the clear margins and then face radiotherapy.
Everyone’s situation s different and you must be comfortable with your decision, I certainly came out of the hospital tonight feeling much more comfortable with the next steps as I just want to get rid of this gremlin and get on with my life.
Hugs and best wishes x
Hi Nels
I had a mx last sept never looked back. In my mind I have made the right decision, no further treatment required back to work after six weeks. I am a fit person back playing squash after 5/6 months. I have not thought of reconstruction I wear one of the ’ stick on boobs!’ have no problems at all. hope this helps you make your decision. Good luck
Suziex
I didn’t get clear margins for a grade1 IDC and needed a re excision… I am quite small busted 34B and and the area was 2.5cm including DCIS, but surgeon never even mentioned mx… Said hed be happy to re excise 4 or 5 times to save uneccessry mastectomy… But only needed one more.
Lulu x
I had high graduated second stage (2cm) tumor. Non-aggressive (ki-2). Clean margins.ER+,PR+. My surgeon said that in any case MX is much safer. And the benefit - dont need radiation and can do every one reconstraction which I want to do. But every one case is different.
Not sure about “in any case MX is much safer”. Research has been done comparing full mastectomy with WLE + rads and the results are comparable. But as said before, the decision is yours. Give the helpline a ring to help you go over your options with someone knowledgeable.
Yes but the radiation itself is not good. And if we can to avoid - in my maind and my doctor also thinks the same way - is the best. Reconstruction we can do always in any time. Treatment also is not so long. Every doctor thinks a little differently, and each patient has different needs and priorities. If we receive the same treatment to mastectomy as after the sectoral surgery - results are not the same. Anyway - do not take me seriously. Every one have to think self what the best.
I called already to helpline 1,5 year ago. They told the same. I did this in France.
Radiation is very safe nowadays in the past they used high doses which resulted in a small increase in second cancers but now it’s extremely well regulated. if it was unsafe they wouldn’t do it.
Mastectomy is not without it’s own risks too… Longer time under a aesthetic, flap failure, capsularisation etc
But each individual is different and the surgeons are different too so a lot is down to their knowledge, skill and expertise as well as facilities at the unit your being treated, the specifics of your pathology and your personal choice.
Lxx
Yes if we are thinking just about cancer recurrence - it is enough. I have been 1 hour under anaestesic. I did full reconstruction with my own fat (liposuction just without steam cells). My breast looks like before. But it is just my expierence.
You are right. And I also understand it, because my husband is still a breast surgeon for a long time and I worked with him.
Oncology there is not a panacea. But if we are talking about clean margins - we never do not know what they realy are, because histology tests are doing like this - - - -, otherwise this will take 10 years for every single person. Hor this it is not possible to check every single cell.
Hello Nels
Tomorrow I have my last of 15 radiotherapy sessions that followed a lumpectomy for grade 1 DCIS. The radio has been OK for me, having to go each day is a pain but the treatment today is very targeted and the only side effects I have had is some reddening of the skin and slight swelling and am assured that these are temporary. My breasts are fairly small but the scar is very small and I have a slight ‘dent’ .
All the best whatever you decide to do, trust your own feelings