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
Oh 
♀️♀️♀️♀️. I’m so sorry this is still so unclear. They really should give you your results for the meeting, like you say. Just leaves you in the dark and so frustrated when you can’t clarify their meaning and your understanding.
I’m glad you’ve at least had the operation now, but again I’m sad you had to pay for it. I hope you weren’t too distressed to wake up in hospital. Where did they fit the drain? I hope they can remov
that very soon. Will your pathology results be at the private hospital? I’m really hoping they did remove the dcis .
Are you in much pain? Sorry for all the questions. I’m keeping everything crossed for you that they did remove the dcis and that you don’t have any further complications including lymphoedema. What a rollercoaster 
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Thanks for asking. I’m ok thanks, I’ve not had any problems with my reconstructed breast (touch wood). Had a bit of tummy Seroma and a part of that wound that hadn’t healed (got a bit gunky) and my arm is still numb just from the sentinel nodes removal. I think so far I’ve been very lucky. Still waiting for the dreaded results and pathology report. My original four week wait was extended to six and so I was sent a phone apt for Mon 24th, but I’ve just now had an out of the blue apt with Plastic Surgeon for before his surgery starts next Friday and so I think that must be about my results. Trying to stay positive, but it will be what it is and like the cancer completely out of my control.
ps: still don’t even have a letter confirming my cancer diagnosis or any of it - I will ask for that and my pathology report.
Sending get well virtual hugs - Mickey xx
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Hi there, let’s hope they got it all and you get your results soon. What a time you’ve had, I really feel for you. I really hope drains is out tomorrow or very soon too, they set you back, couldn’t wait to get mine out.
I rang the breast care BCN’s and someone phoned me back. So what I know is my case was due be heard at MDT today. I had to laugh after telling me it was strange a different BCN gave me results over phone, she then tried to read bits of the report that she could understand and told me that they tested 3 lymph nodes and they were clear, the original tumour was bigger than expected and they found another smaller one same muscinous type. That’s all I know. Good news re lymph nodes, but not sure if margins were clear and she kept making statements about not being able to have further surgery as I had an mx, so they may want other treatment. Trying not to read between the lines there, but looks like I’m waiting for either a phone call Monday or a different apt if they want to discuss f2f 
♀️x Either way, I know that with two tumours and two wide areas of dcis in the same breast, the mx was the right surgery.
I also did my nhs predict score (unfortunately it doesn’t cover radiotherapy), but it did say I didn’t need hormone therapy or chemo. Even though I am hormone positive. I will be discussing that as they’ve told me I have to have it.
Ultimately though I know the predict is just a tool and doesn’t take all the complications and other cancers into account, so we’ll see.
I’ll keep you posted and I know you will too.
Mickey xx️
Hey Mickey, sounds like you have had a fairly good day with the news about your lymph nodes. I don't know too much about muscinous tumours but from what I've read the prognosis is generally good, which must be a bit of a relief to know. Here's hoping that you get your full results soon but you're right, having a mastectomy was definitely the best thing for you.
My drain was taken out this afternoon as the fluid output was low yesterday and I'm relieved to see the back of it. Just after I'd left the clinic I received a call from the surgeon to say that they had received my results and it was good news, everything had been taken out! I'm really surprised that the results are back so early, just 8 days after surgery, as the nurse said it would take 2/3 weeks. I'll know the full details when I see the histology report but a total of 30 lymph nodes were removed and only one had cancer in. It seems like the treatment plan is remaining the same as it was - radiotherapy and hormone treatment - but I'll know more after meeting with oncology. I'm strongly estrogen positive and they've mentioned I might need to take medication for 10 years. Still taking just one step at a time but getting there slowly 
Fingers crossed that you have some more positive news soon when you get all of your results xx
Fabulous news, drains is out, results back early and they got it all and only 1 in 30 cancerous - hallelujah.
Strongly oestrogen positive - was that like a score of 8/8 or something? That was my score, but I’m not sure how that effects hormone therapy. I’ll ask.
Me too, one step at a time is my approach too.
Have a good evening xx️
May not get away with it then. Have you started it yet? If so which one? Xx️
I’ll definitely ask and let you know. Im sorry you’ve had such a journey. Please keep me posted how you get on in totality. I’m keeping everything crossed for you and thank you for your sharing and caring replies xx️
