Good evening. I have had two wide local excisions for high grade DCIS in the past four weeks. I’ve just found out that that there is extensive DCIS close to the new tissue margin in at least three areas. I’ve been ok with the treatment so far, but i’m starting to feel quite scared now. After this time there will be no other option but a mastectomy. I’m 42 and really don’t want a mastectomy. Has anyone had three wide local excisions and then clear margins? Thank you for your time x
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Repeated surgeries must be really taking a toll on you.
However, in your case you know it’s DCIS, so you could have probably have an immediate reconstruction and avoid radiotherapy. The advantage is being finished treatment and never needing a mammogram on that side again.
With every excision you are left with less and less breast tissue so you could be lopsided.
Ask your surgeon if that’s an option.
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Thank you, it’s really useful for me to see it from a different perspective x
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Yes I had 3!
I was told number three would have been my last though.
The main lump was TINY but they could never get the margins.
However - number 3 worked and whilst a little crooked and smaller on one side my boob is still there
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That’s great to hear, thank you x
My neighbor also had the same problem as you… high grade DCIS . Had 2 surgeries, only to find out that the margins still weren’t clear. She went on to have a 3rd surgery (she didn’t want a mastectomy), and everything looked good afterwards… She was in her 40’s at the time. Fast forward 17 years later and she is still doing great!! My prayers are that you will be too!!
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That’s so good to hear, thank you. I’m trying to stay hopeful x
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@947902
Sorry to hear that they haven’t managed to get clear margins yet, I am in the same situation and currently weighing up whether to have a 3rd re-exision or mastectomy. @willowherb great to hear that your 3rd excision was a success.
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Sorry to hear you’re in the same situation, it’s nice to hear we’re not alone though 
. I’m meeting my surgeon next week to talk through things, but I think I’m swaying towards giving it one more go, then at least I know I’ve done everything I can to save my boob! Are you meeting with your surgeon to discuss? Rachel x
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It was my choice at the time, but my surgeon also thought he could do it. I am a bit buxom so he had something to go at!
However, it would have been the mastectomy if there had been a 4th go, no question
Good luck both of you @947902 and @Summer-sunshine
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Hi 947902
You’re not alone and you sound amazing. Like others I’m sending up arrows for you - and life can be a leap of faith sometimes can’t it? But we’ve got through so far.
I well know how - by the time the third op comes along - sheer tiredness and disbelief / shock can threaten to bring you down.
I had 3 ops - the first was a wide local excision for high grade DCIS - the second wide local excision cleared 2 more areas of DCIS that fortunately what been spotted by surgeons during the first op. Then there was the re-excision plus underarm surgery to clear the margins of an invasive cancer that had broken out, they believed, from the first DCIS.
For that I took the surgeon’s advice that she would rather not carry out a mastectomy on the basis that she believed that I would regret it afterwards. I was very surprised that she said that to me - could not see why - but I bowed to her expertise and experience, and at least I knew where I was so that must have made things easier. It was simply a matter of waiting for the op….
It’s just over 2 years since then and, for the second time running my annual mammogram has shown no sign of cancer.
I hope that it will help you to hear of my experience. Wishing you all the luck.
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Thank you so much, it really helped me hearing that and I’m so glad you have had two clear mammograms. Rachel x
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Hi 947902
I thought I’d contribute to your post and let you know about my experience…, I was diagnosed with 30mm high grade DCIS in my left breast in March last year. It was at my first ever mammogram and I had a choice of surgery. First surgeon I saw recommended mastectomy and immediate reconstruction. When referred for consultation with oncoplastic surgeon, they recommended wide local excision - lumpectomy. I had spent 5 weeks in between appointments processing losing a breast. It was a confusing time. What I do know is that surgeons will always try to suggest the least invasive method if they can and this is where surgeons can differ on their opinions. Our situations get discussed in wider MDT (multi disciplinary team) meetings and mastectomy was the first recommendation I had.
For me, I wanted the anxiety of reoccurrence as much as possible reduced, not to undergo multiple surgeries and anaesthesia + it was important for me to avoid radiotherapy which usually follows lumpectomy.
So in June last year, I had my mastectomy with immediate reconstruction with a polyurethane implant + reduction on other side. I was amazed at how quickly I recovered … I was really strict at taking it easy for first few weeks - I had virtually no pain. My reconstruction feels like a normal breast - the implant has gradually softened into the skin envelope (skin sparing mastectomy). Because of this, I haven’t felt a huge sense of loss - I was fairly large at an FF cup. I now have E cup breasts sitting symmetrically and are a constant reminder of positives; the fact that this DCIS was picked up when it was, surgery to remove and replace and to move forward feeling grateful + more symmetrical breasts than before!
What I wanted to say is the idea of mastectomy can be far more traumatic than it actually is in reality. I had a sentinel node biopsy done through the breast scar so no under arm pain. This to me is far less traumatic than multiple surgeries, hoping for clear margins and possible further excisions to the breast.
I would say do your research, ask lots of questions, I used to take notes at my appointments, speak to others, and in the end, you’ll know you made the right decision for you.
Good luck!
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Thank you so much for this. I am going to have one more wide local excision and then if that doesn’t work it will be a mastectomy with immediate reconstruction. You have made me feel so much better if I need to have that done. Thank you
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Hello!!
That’s wonderful, so pleased I’ve helped…
And I bet you feel heaps better now you’ve made your decision… 
x
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@947902 Hi, can I ask how you got on ?
I had my 1st LWE on 7th Feb (my 45th birthday) to remove lump & 3 nodes. I then had another re-insision on 1st march as margins are not clear. I’ve been told today they have found satellite cells in the tissue they have removed & I now am under going my 3rd LWE in 6 weeks. Good thing is my nodes are clear, however mine is a grade 3, stage 1 & we are still waiting on my oncotype results to confirm if chemo is needed. Am actually unsure how I really feel right now but trying to stay positive
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Morning . I’m pleased to say that the 3rd one worked! To be honest I was losing hope a bit and convinced I would need a mastectomy, so I was pleasantly surprised when I got the results. I hope it gives you some hope that it can work the third time. I am meeting with my oncologist next week to see what happens next, I know I need radiotherapy at least. How are you doing with the surgeries? I think the anaesthetic takes it out of you when you have numerous ones. I’m 3 weeks after the last one now and I’m pleased to say everything is healing really well. Rachel xx
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Hello Rachel.
This is really good news! I feel so happy for you.
Thank you for posting the result here and sharing with us, I myself surfed these forums for so long before signing in and it helped me so much knowing other members experiences.
All best with MO appointment.
xx
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Hi @947902 that is such good news to hear! Thank you so much for sharing. I too have high grade DCIS that ended up being much bigger than they first thought. I had my first WLE on 12th January and am booked in to have my second next Wednesday 27th March. It has been a while in-between as I had to have an MRI scan. I hope you are healing well. Have they said when you will start your radiotherapy? I have been told I will also need radiotherapy xx
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Hi Tracy . I am not sure when I will be starting radiotherapy, I’m hoping I will find out at the oncologist appointment next week.