DCIS discovered AFTER WLE of IDC. Anyone else had this?

Hi,
I had my surgery results today by phone. Really good news that the invasive ductal cancer lump was removed with clear margins, no node or vascular involvement. However, there may be some DCIS still in there.
Has anyone else had this happen? I want to celebrate my good news but have a sinking feeling about this DCIS.
Apparently it will be up to my surgeon where we go from here. Maybe what they call a “cavity shave” operation, or radiotherapy. I know I will have to have chemo because of the IDC being high grade.

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Hi Lola,
Sounds like you are in a similar situation to me…I had my WLE & SNB on 7th February to remove an 8mm IDC stage 2, they got clear margins on one side only and have found DCIS in a 3cm area surrounding the cancer, which they are going to remove on 22nd Feb, I am node clear and part of me wants to celebrate that…my surgeon seems quite positive that he has removed all the cancerous cells and he did explain that he could leave the DCIS cells there for the rest of my days and they may amount to nothing…however given that I have had cancer he says they need to come out…I’m totally with him on that one…!! I am assuming that the DCIS came about because I was only referred on my second visit to the GP (8 months post lump discovery) however on the other hand I am also extremely grateful that the news wasnt alot worse…i.e lymph nodes etc.
Once the DCIS have been removed, am hoping for clear margins following this next op…if not my surgeon says we will “re-assess”, would be great to hear from people that are a little further on in their journey though take care, Laura

Hi Laura,
Thanks for telling me your story. I am also having my second op on the 22nd Feb! This is to get a bigger margin on the DCIS cells on one side. The IDC tumour was removed with good clear margins but the DCIS only had a clear margin of 0.5mm on one side. The other margins were OK.
My DCIS is high grade, so they want it all out before it changes to an invasive cancer. I will be starting chemo in March whatever the results of this second op are, and apparently if they don’t get a big enough clear margin they will re-assess at the end of my chemo.
You are right, it would be great to hear from people a bit further along the journey!

xxx

Hi Laura and Lola,
I am in a similar position to both of you. I had 18mm, IDC tumour, grade 3 removed by WLE and SNB 3 weeks ago. Results came back Nodes negative, ( overwhelmed with relief). However, although 18mm IDC now gone I need a re-excision because they also removed a high grade DCIS which had less than 1mm margin on one side. Initially I was over joyed, but now 3 weeks on I can’t stop thinking about the DCIS, they never mentioned it before. I am due to have both post op and a pre op this Thursday.
You are both ahead of me treatment wise . How are you both getting on, have you learned anything more ? Laura did your surgeon need to reassess and what further treatment did he suggest? Lola how was the chemo ? It would be good to hear from others who have been through similar experiences?

Kathy xx

Hi I’m the same ! I have WLE and SNB for IDC, 3.7 cm, removed on 17th June. But DCIS high grade still in there. So mastectomy on 12th August is planned. Not looking forward to it, but want to get on with it, if that makes sense. 3 weeks to go.
bowl of cherries, I would be interested to know how you get on
Z

Hi girls! Yes, I have had the same. Had to have second operation to get clearance. Seems it happens a lot as I met two other ladies on my second operation day having the same done. My tumour was a mucinous carcinoma grade 2 and was 35 cms . Second op the surgeon went in on original scar and they removed rest to get clearance and did a cavity shave and final histology said it was fully removed, no evidence of any residual malignancy.
It was a bit of an ordeal but meeting the other ladies having the same one was helpful and we have stayed in touch comparing notes as we have recovered.
The wound healed ok and I was given antibiotics as there is an infection risk going into a wound again. Had to wait eight weeks before rad treatment started which I was concerned about ( the delay) as wound had to heal. Should of been six weeks but our local unit really busy!. Hope you all get on ok . Katy.

Hi,
just seen this thread. I had the same. DX IDC right breast in October. Removed after SNB along with full ANC 2/28 nodes affected. Consultant sent me for an MRI which found a Tubular Cancer in my Left breast. Had a WLE to remove that which then found DCIS. Margins only 1mm so am going back for another op on WEdnesday 24th July.
Please don’t worry about delays in adjuvant treatment. Once the main Cancer is gone there isn’t a major panic I gather. My original Dx was October, Chemo started in February (been finished a month now). Provided the next op gets clearance I will have radiotherapy both sides once wound is healed.
It can be a long road but the medics know what they’re doing and look after us very well. It’s nasty but doable.
Good luck to all of you.
xx

Hi and thanks for all the replies.

I am much further down the road now since my original post. I had a second excision in February to obtain wider margins for the DCIS, which I have been told was successful. “Good clear margins”. Had it not been successful I would have needed a mx after my chemo. I then started my chemo treatment and will have my last session of 6 this week all being well.

I asked my oncologist if there is any possibility there may be some DCIS still left inside the breast. He said it is unlikely, but should there be any the radiotherapy will kill it off. (chemo doesn’t work on DCIS). He also told me not to worry because DCIS is contained in situ and isn’t going anywhere else.

Linda xxx

Hi, I was told exactly same as Linda by my team, rads will do the job. Apparently common to have Idc and some dcis. I was told on day of surgery that this is likely x

Hi had both,

grade 2 IDC 22 mm, high grade DCIS, node involvement with vascular invasion. Just had second WLE as behind teh original tumour there was a statilite 6mm area that they didn’t know about so they didn’t get clera margins. Results on Thursday, fingers crossed. xx

Hi samjs
ive had grade 2 7mm high gade DCIS and node involvement with vascular invasion just like you! I also had a WLE and lymph node clearance only to be told like you I had a satellite area behind the original tumour! Had op number 2 sadly showed more DCIS and no clear margin again! This is resulted in me now facing a mastectomy on Tuesday which has knocked me for six! Hopefully your news will be better than mine! Are you having chemo? I am but as yet no date its all a bit of a roller coaster and one which I would like to get off!!!

Hi Barbarella,
When I went in for the second op, I told my consultant that if he didn’t get it all this time I wanted an mx. However, he will not discuss anything that isn’t currently on the cards. i did make my opinion heard though. Not sure if I am having chemo as I don’t go back until Thursday for the results. I am expecting it though.
SAm x

Hi
I am not sure if my experience will help? Here’s hoping… I had WLE and full Clearance (left breast) in Feb this year after x 6 cycles of neo-adjuvant chemo (which didn’t shrink it!). I was diagnosed with IDC stage 2b grade 3; 7/8 ER+, 4/8 PR+, HER2 - July 2012 and commenced chemo in August 2012. The first op did not achieve clear margins (some areas of high grade DCIS were found) and I went back in for a re-excision in March which found more high grade DCIS. As I mentioned earlier my tumour (highly ER +) did not respond to chemo and had spread to my lymph nodes. I was not expecting to be told I had multi-focal High grade DCIS as well but this was confirmed post first op.
I finally had an MX with immediate DIEP recon in May. I wanted the MX all along, as I felt this would give me the greatest chance of beating it and getting rid of all the cancer. However because of my age at Dx (43) my consultants decided on a more conservative approach and refused to do the MX straight off, opting for primary chemo first and WLE - neither of which worked! So, wiuth hindsight, MX would have been the best option all along, but I suppose none of us have the gift of hindsight!
I am pleased with the results of the MX and Recon and wouldn’t change it. It IS scary and not something any of us want to do, but I wanted the best shot of being around to see my kids grow up, so its good enough for me!
Good luck with the rest of your treatment
Em x