Hello, I was diagnosed with a grade 3 IDC and had a lumpectomy in May. The subsequent biopsy showed an unclear margin plus 1 out of 3 lymph nodes with cancer. When I received the histology report it also referred to an area of high grade DCIS 'within the boundaries of the invasive tumour'. Approx 5% of the IDC tumour was not removed and this is adjacent to the high grade DCIS which has resulted in the unclear margin. The pre-surgery MRI did not identify the DCIS and none of the post-surgery discussions or letters made any mention of high grade DCIS either. Following the lumpectomy I was put on a 6 month course of chemotherapy with the plan to re-excise the margin and possibly undertake a full lymph node clearance after the chemo.
The oncologist has said that the chemo is adjuvant, to mop up any stray cells and prevent a recurrence, and there is no need for any scans during chemo (despite not all of the IDC tumour & DCIS having been removed). They also recently advised, when I asked about the DCIS, that this would not respond to chemo so they had been focussing on the IDC. The surgeon has recently said that the plan is still to re-excise the margin after chemo and to now definitely have a full lymph node clearance. I asked about the removal of the high grade DCIS, and the apparent lack of information with regards to how large this is, and asked if a mastectomy would be more appropriate and was told not at the moment, but there are no guarantees that the margins would be clear so options would be discussed after the next surgery if necessary. I asked how much breast tissue would be removed - quite a lot has already been removed - but was told that they wouldn't know until during the surgery. I was also told that they won't be able to tell if the chemo has worked, although there may be some evidence of this within the removed lymph nodes and depending on how much cancer is found they may need to consider re-staging and other treatment options (CT & Bone scans 6 months ago showed no spread).
So, I'll be having the re-excision approx 9 months after the first surgery but there are no plans to have a further MRI before this to check on the size of the remaining IDC tumour and area of high grade DCIS (I will keep requesting this). I'm concerned that the high grade DCIS appears to have been overlooked during my care plan and the re-excision won't be successful, so it would be good to hear from any others who have had margin re-excisions which were successful first time, or had a re-excision on a joint area of IDC & high grade DCIS. Thanks x
Hi,
What a battle you are having re your dcis. I truly don’t understand why this is happening still. Both my areas of dcis were picked up on the initial mammogram that I had at my first breast clinic apt after I’d been referred because of finding a lump. I was told very quickly how big one cluster of the calcifications were 40mm (4cm), I don’t actually know how big the second one is, but to be honest, I didn’t ask. Knowing I had the invasive tumour and one wide area of dcis and another was enough for me to recognise that when they suggested masectomy, it was the safest option for me.
When is the MRI scan scheduled for now? Please keep us posted if the dcis shows up on that. I just hope you can get them to see sense and remove the dcis at the same time, surely that’s the only safe outcome for you now and also less surgery for the hospital. If they don’t budge and deal with the dcis, are you able to insist on your choice of surgery. I’d probably seek advice from Macmillan at least if I were in your shoes, I totally get how uncomfortable you must feel.
Meanwhile, my pre-op bloods etc were taken yesterday, got covid test Saturday and then nuclear science blue dye injection Monday and so fingers cross (strange terminology under the circumstances) my masectomy and reconstruction will go ahead on Tuesday with sentinel node removal.
Wish I could help you more.
sending virtual hugs Mickey xx 
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Hi,
I totally understand what you are saying. Keeping my fingers crossed for you that the dcis shows up on the MRI and that it all gets removed the best way together.
Please update when you know more and of course, I will let you know how I get on.
Take care Mickey x️
Hi ya as promised LalaLou and Queen Poppy update - all done - I was first to go to theatre yesterday and woke up at 6pm ish. Apart from feeling a bit sick (just taken anti sickness tablet) all went really well and not much pain. I’m now sitting up in a chair.
Cafetter bag was a gorgeous Sea green at first, due to the radioactive lymph node injection, lol. I’ve drunk lots of water (as directed) and so it’s lighter green now.
Blood pressure has been a little low and so checked more often and more water I was told to drink.
virtual hugs and relief - Mickey xx️
Thank you so much - I’ll keep you posted and know you will do the same xx 
can start to look forward to Christmas now, you are right xx️
