Hi. Still trying to process everything and I can’t understand everything which is making me panicky and I am trying to stay away from google. Diagnosis - Multi focal grade one invasive ductal cancer 12x8mm and intermediate grade DCIS over 10x8cm area.
Is this two types of cancer? Or is the invasive ductal something that has grown from the DCIS? ER positive and nodes are clear. HER2 negative. Pet scan shows no metastases.
Booked for a full mastectomy on 18th September and terrified
Please help x
I’m four weeks on from double mastectomy for IDC plus an area of intermediate DCIS in one breast and 10mm of ‘up to high grade’ DCIS in other.
My understanding is that the DCIS are just that - cells in situ which may or may not eventually become invasive.
I’m oestrogen positive HER2 negative and awaiting node biopsy results and Oncotype. My surgeons didn’t seem particularly surprised by my diagnosis- in that I don’t think it was uncommon. xx
Thank you for such a quick reply. It’s the size of the DCIS that is freaking me out. 12x8 cm! I am just really frightened. Everyone on here is so strong I just feel like I am close to tears all the time
I think everyone feels like that at initial diagnosis. I was a mess and got diazepam from docs to help. I actually sat in the waiting room a few times not understanding how I was ever going to stop crying.
I’m a bit of a mess this week waiting to see if I need chemo, but just take every day at a time and use your GP for support.
I’m sure there are lots of women who will come along here who have had large areas of DCIS xx
I would also recommend calling the Breast Care Nurses on this site. I called them in the early days of diagnosis, crying hysterically and unable to breathe - the person I spoke to just 100% saved me. She said we could talk for as long as I wanted - I explained my fears, how I didn’t know anyone with bilateral DCIS. She was wonderful xx
And please don’t worry about the mastectomy - or at least know that the fear is much much worse than the reality.
From what Ive read, having IDC that has developed from DCIS can be a good sign as the tumours tend to be slower growing and lower grade as in your case. Whereas tumours that spontaneously develop tend to be more aggressive.
It is common to have a mixture. I have 4 multifocal invasive tumours mixed with DCIS and some LCIS. It is all grade 2 for the IDC but some of the DCIS is grade 1. I had a lumpectomy initially but they just kept finding more, so after my chemo (lymph node involvement), I’m having a masectomy, possibly a double. Good luck with it all. You have a nice early diagnosis so should be fully treatable.
I was diagnosed with multi focal grade 2 DCIS and Grade 2 IDC . I’m back tomorrow for the results of another lot of biopsies on a seperate area .and my treatment plan . so we will see what that shows …
my consultant stressed that although the DCIS is a large area , it is essentially early cancer so not to get too hung up on it being a large area .
I’ve come back HER2+ too so I’m assuming I’ll need chemo too
I hope all goes well with your treatment. Thank you for taking the time to be so kind to reply. It’s just awful isn’t it. The waiting and being frightened.
You are all such brave people to find the kindness in your words to me when you are all going through this too.
Thank you x
Hi
I think you said your DCIS is 12x8mm not 12x8cm? That’s small. As I understand it the DCIS are pre-cancerous cells that will be removed with the tumour and a clear margin around both. I know it’s scary but try to be positive and ask lots of questions. Don’t be fobbed off.
Personally, I did loads of research as I had a rare type of Triple Negative breast cancer (Apocrine). As it turned out it is much less aggressive than TNBC and the outcome is better. I asked for additional tests as the oncologists were unsure about a treatment plan given its rarity. I also sought a private second opinion from the Royal Marsden Hospital which was very reassuring.
I would urge you to take someone out you to your appointments and go with prepared notes and questions. It’s your body and your voice and views should be heard.
The very best of luck to you. Keep strong. Xx
Thank you. I did mean cm for the dcis. It’s not densely packed in the whole area but it covers an area of 10 cm from one point to another.
DCIS is early cancer which is still contained in the ducts and hasn’t invaded the breast , IDC is essentially DC which has broken free into the breast tissue , so it’s not unusual to see both together .
I’ve been told my IDC is small but have three seperate large areas of DCIS hence needing a mastectomy it’s also high grade and HER2+
Yours is low grade so it won’t be growing quickly which is great , it’s easier said than done but try not to panic - you are on the treatment path now x
Just updating my earlier post about DCIS, having had a double mastectomy and sentinel node biopsy five weeks ago and finally got my pathology results from surgeon yesterday.
Before surgery we were looking at 3cm IDC grade two and a small area of DCIS in right breast and what looked like 1cm of up to high grade DCIS in left.
Pathology showed a 32mm IDC grade two, and 5cm DCIS in the right and in the left, was 6cm of high grade DCIS and two tiny invasive tumours of about 1mm each. Amazing how much was found after surgery considering I had lots of mammograms, ultrasound and stereotactic mammograms and didn’t show up.
Lymph nodes were clear so moving on the letrozole for five years followed by tamoxifen for five.
@norms80 I read in some paper that 20-40% initial DCIS diagnosis (based on mammogram microcalcifications and on vacuum assisted biopsy) comes as IBC in final histopathology. I had something that supposed to be pure DCIS ( vacuum biopsy did not pick up the invasive bit) and in after WLE op histopathology there was also IBC so sentinel nodes excision for analysis was required and another op.
Mammogram is not as sensitive so often lesions are bigger. Basically the only final diagnosis is after the op - histopathology. The waiting is always the worst part. Once things start moving and you already have the op date - even though physically challenging it gets better for a moment as you feel some agency. Once you know your final treatment plan then you just concentrate on this and how to deal/prepare for side effects.
Great HER2 negative. ER+ they will give you either Tamoxifen (premenopausal) or Aromatase Inhibitors (postmenopausal) which I am bracing myself for after radio.
I wish you successful operation and good recovery.
You have some time now so it would be great to invest in pre-rehabilitation, exercises, especially anything to strengthen arms. I believe it helped me after the second op 2 weeks ago. Hold on there and sending you lots of love 
Thank you x