Margin re-excision / G3 IDC & high grade DCIS

Hi

i had a similar story to you, I had a lumpectomy initially followed by two cavity chest shaves, still no clear margins. I had an invasive HER2+ lump , but none of the DCIS showed on my mammogram or ultrasound. Never had an MRI or any other scans. After the third op I started my chemo and Herceptin, and then had a mastectomy 7 months after my first op. No cancer or DCIS found in the remaining breast tissue. My team were also very unconcerned (even though it was high grade and rupturing) about the DCIS, apart from needing to make sure it was all got rid of. Just because there are no clear margins, doesn’t mean there was any cancer remaining, but the team did say the chemo and Herceptin might have played a part in getting rid of any remaining rupturing or invasive cells - will never know. 

What I would say though is that during my chemo, the surgical team appeared to have forgotten about me and my need for a mastectomy, I had to call them to chase up what was happening, so make sure that doesn’t happen to you.

Good luck with the rest of your treatment

Jo x

Hi, I find the whole decision making process strange. I have an invasive tumour with two different graded areas of dcis and I was told I wasn’t suitable for two wide excisions as my breast was too small. It was then suggested perhaps a mammoplasty, but again, this would leave me with no breast and consultant told me that my breast is unstable and at high risk of re occurrence and so masectomy has been the plan. Although I’m still waiting with baited breath for a surgery date. My dcis did show up as a large area of microcalcifications on mammograms when I went to get lump checked out. Do you have a date for you next surgery? I know it’s not quite what you were asking for, but I hope it was a useful share. Mickey x

Thanks for your message Jo. It seems they had some problems with sizing during the lumpectomy as the pre-op mri showed the tumour as at least 37mm, possibly 41mm, but only 32mm was removed. They then did cavity shaves to all margins during the op, but there's still one which is not clear. I wasn't told that there had been any cavity shaves, I only found  out after requesting a copy of the histology report. This has estimated the tumour to be 44mm so it seems that quite a bit is still there. Like you I  have been concerned that the surgical team had forgotten about me but I had a meeting with surgeon last week - which I pushed for -and fixed a date for surgery in early January,  4 weeks after chemo ends, subject to pre-op assessments being ok. Fingers crossed x

Hello MickeyM, definitely agree with you about the decision making process. I asked my nurse how I could be expected to decide about a full lymph node clearance when the histology report didn't even say how much cancer was found in the lymph? Luckily when I  spoke to oncologist about this they checked and there was macrotasis so said that they would definitely recommend removal so the decision was then made for me. It's difficult when surgeon says one thing and oncologist says something different. I hope you get a date for your surgery soon. I had calcificiations found during a mammogram 4 years ago but was told this looked benign and mo biopsy was taken. It was n the same breast which now has the DCIs and IDC and i understand that calcification is an early sign of DCIS,  which can lead to IDC. I've been told several times that the current situation is not linked to the previous calcification but I'm not entirely convinced. Hope everything goes well for you, thanks for your message x

Thanks for your reply. I’m sorry that they didn’t do a biopsy on the calcifications 4 years ago. Do you know if they were macro or micro? I’m just curious if you do? My understanding is the sage as yours. I’ve been told they have to get rid of all the areas of DCIS also as it could turn to IDC - no idea on timescale, but with an invasive lump also, it’s not worth even contemplating. 

Are you comfortable with their surgery decision?  If not, can you ask for a second opinion? 

Thanks for your reply also. Mickey x

Hi I have had one surgery, theraputic mammoplasty with reduction on other side. They advised my lump was removed with a clear cavity shave, it was 20mm, and my lymph nodes was clear. From surgery it showed I am her2 positive,  so now on chemo. From my surgery histology results results, showed I do have an area of dcis which was occult on my scans they could not get clear margins on. After my chemo has finished, I have a clinic date booked with breast care team I am having a masectomy with immediate reconstruction. I think an mri after chemo to assess your breast again and to confirm which surgery is best xx

Hi Mickey, The letter I received following the mammogram when they found the calcifications just states "benign scattered calcifications and no suspicious features (M2)". I'm thinking of requesting all of my scans and notes, which  will show if the calcifications were in the same area as the current DCIS & IDC. I'm not 100% comfortable with the fact that there has been no mention at all of any high grade DCIS since surgery in May, until I raised it with the team recently, and even then it doesn't seem to be regarded as important. I've been told that I'll need to have another ECHO after my chemo ends next month but no mention of an MRI but I'll definitely request one prior to the surgery. I suppose it's possible that the DCIS didn't show up on the pre-surgery mammogram, ultrasound & MRI due to the positioning of the tumour but now that it has been mostly removed I think that's it worth having another MRI and don't know why it isn't being suggested. 

(Apologies for spelling in previous post. I sent it whilst having chemo)

Hi Shaz, thanks for letting me know this, really appreciated. This must be so difficult for you to go through that and now have to have a masectomy also so soon after.  I feel guilty for saying this, but relieved I didn’t decide to go down that mammoplasty route. I am frustrated with the wait for my masectomy and reconstruction and sit ‘waiting for the phone to ring’. I did get an apt today for my CT scan this Sunday evening to look at my tummy. So I guess that’s a positive. 
when are you due to finish your chemo Shaz? I hope you are getting through it ok, hugs Mickey x 

Hi, Thanks for this update. I would certainly ask - I’m not sure if calcifications show up on an MRI, be interested to hear though. What’s an ECHO? I hope you’re getting through the chemo ok - sending big hugs - Mickey x

Hi Mickey, an ECHO(gram) is to check the heart, to make sure that the chemo hasn't damaged it. Getting through the chemo reasonably ok now, and it helps to focus on only having one more cycle to go.Today I received a copy of the letter that has been sent to my GP following last week's discussion with the consultant. Although it refers to us 'discussing the pathology report in detail' there is still no mention of the high grade DCIS that has been found. Not sure why it still isn't being referred to. It seems very odd!