Hello
I’ve been diagnosed with dcis, they want to look at another area before a surgery plan can be made (praying it’s ok).
I’ve been told it’s 7mm and low-medium grade.
But I’m sure I’ve read a few women report following post surgery including post surgery biopsy results, that it ended up being bigger, different grade and more surgery required as clear margins weren’t gained.
Have many encountered that?
Thank you and hope you’re all ok. X
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@tuttifrutti hi ive been wondering this too. Mine is 13mm they havent said what grade or hormone status. Having surgery in 2 weeks the waiting is awful. Wishing you all the best . 
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It all sounded so straight forward in the surgeon’s office, then I started reading people’s experiences but unsure what the numbers are that do have different measurements etc.
May I ask what sort of surgery have you been recommended? X
@tuttifrutti im having a wide local excision think thats correct name . Previously called lumpectomy apparently. Was only told size 13mm. Wasnt told stage/grade or hormone status. Will find our more after surgery so it is all the not knowing about radiotherapy or hormone blockers ect . What was you told . Feel free to message me directly if it’s easier .
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The size, grade and hormone status was also on the letter the surgeon sent after I saw him. But obviously some of that can change.
Does anyone know why i wouldnt have been told this an that it would be confirmed after surgery . I was told i could stay on hrt till they know the hormone status too.
Originally I was told my lump was 9mm
then after biopsy they said it was 12mm when I had a lumpectomy it’s actual size was 15mm
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I had an IDC grade 2 32mm with an area 10mm of intermediate DCIS (invasive was ES+ HER2-) also area of high-grade DCIS on other side. This was from mammograms, ultrasounds and stereo static mammogram.
Post surgery pathology was 32mm IDC - no change, but DCIS was 50mm on this side along with the tumour, and 60mm on the other side along with two tiny foci mini invasives.
I had double mastectomy so no further surgery (four lymph nodes tested were clear) but had I had lumpectomy they wouldn’t have had clear margins - none of this showed up on four mammograms, three ultrasounds and a stereo static mammogram.
Goodness, that’s quite a difference and must have been a shock. I’m glad you didn’t need any further surgeries.
How are you doing now? Xx
It was a bit of a shock but I think at the time I was more thinking of whether I needed chemo so had expected the worst so was pleasantly surprised to walk away with an appointment for a dexa scan and letrozole for 10 years (consultant said 5 years and 5 years tamoxifen but I’m quite happy on letrozole so will probably stay on it if all else is ok).
I didn’t have recon so recovery was quite quick - it’s actually a year this weekend since I found the lump and then tests and op a few weeks later was like a whirlwind (we had private healthcare so there was no real wait for surgery, just the five weeks for the pathology as oncotype took ages).
I’m great now thank you. To be honest, I’m happier than I’ve ever been - it’s been a huge wake up call to get healthy, I thought I was relatively healthy before and worked out lots, but since diagnosis I gave up booze, not a drop since a year ago, and lost more than three stones so feel great.
I hope all goes well with your treatment - it’s an awful time when you’re in the middle of it, but there is light at the end of it all xx
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I had an area of 10cm of high garde dcis,.diagnosed through mammogram and ultrasound then a mri.
2 biopsies and markers placed. I had 2 spots of invasive ductal carcinoma which was her2 + and hormone + so i needed chemo first to shrink it.
Was always going to be a left side mastectomy due to the size of it i just finished chemo on 14th march, then had a double mastectomy and diep reconstruction.
Had a great response to treatmeant, i was initially told it was grade 2, then after surgery it was grade 1. And it was slightly smaller than they thought (area of dcis ) xx
@stevie-puggle hi was you told the grade or hormone status before the op. X
That’s great about avoiding the bed for chemo. I find the prospect of that terrifying. And it’s wonderful how it has changed you for the better, it gives you a new appreciation for life and the world, yes I never drank much but won’t touch alcohol again. X
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Glad you’ve completed the chemo and surgery, thanks for replying x
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Hi tuttifrutti
I was told 22mm after biopsy and ultrasound however it ended up being 55mm after surgery. I’m just glad it’s out in all honesty. I was devastated when I saw the scar as I was told initially it would be approximately an inch (yes I’m old ha ha!!), but 21 months in the scar has faded lots and I’m ok with it. All the best to everyone on here xx
Hi, I was 9mm IDC on mammogram, 10mm IDC on USS. Post op, 16mm IDC, surrounded by a further 10mm of medium and high grade DCIS, that wasn’t even seen or known about prior to surgery. It can change, some things can be radio-opaque on scans.
You will largely get replies from people who had changes post op, so working out incidence of changes based on that, will give a skewed result and imply it happens to everyone. I suspect plenty of people find things change though, it seems fairly common IME.
@circleoflife
I was told before my Op, grade 3 and ER- PR-
Oestrogen Receptor Negative
Awaiting Herceptin 2 results. (Her 2 results will not change surgical plan.)
In my notes it’s says Her-2 Receptor status not back yet, but as it’s a grade 3 and is ER and PR negative, it is more than likely to be a triple negative breast cancer
Then I got the Herceptin results later and that was negative like they predicted. X
Hi. I was told after my biopsy I had a 35mm tumour in my milk ducts which the spread to lobes. I had 2 biopsy originally thinking it was 2 tumours but after scans showed it was an extension of the first tumour. Was then spreading outwards multi focal. I was advised to have mastectomy. The full cancer span was 65mm from milk ducts to lobes and was removed with clear margins. Wait for your scans which will give a better picture of affected areas. Sending positive thoughts your way xx
Hello,
I was diagnosed with a 1.8cm mixed lobular and ductal carcinoma tumor with surrounding DCIS. The first abnormal mammo was late Feb and I just had a lumpectomy last Friday (6/20). The delay was because of transferring facilities and needing more of a work up. Initially, they told me it would be stage 1a with no lymph node involvement. I got a call yesterday (6/25) that they need to do a second surgery because they didn’t get it all, on 7/7. Still no lymph node involvement, the tumor measured 2.1cm and they said it’s between a stage 1B and stage 2A. It’s grade 2 which didn’t change. Hope this info helps and you have good news every step of the way.
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@tuttifrutti - I was diagnosed with DCiS after my first biopsy in August last year … mine was multi focal so no size indicated to me at the time , but it was high grade .
Further biopsies gave a more definate diagnosis
High grade multifocal DCIS , overall size 128 mm
And a 1.1 mm her2 positive grade 2 IDC
I opted for mastectomy due to the size of the DCiS and when the pathology cane back my surgeon said a WLE wouldn’t have given them clear margins , the DCIS was even in my nipple and I had seven seperate IDC tumours , all very small (biggest was 7 mm I think ) .
I then had chemotherapy which I finished in Feb and Targeted therapy for the her2 receptors .
Usually this is 18 cycles but I’ve stopped at nine due to being allergic to it .
One thing I learned is that things do change along the way with diagnosis because in all honesty they don’t really know what they are dealing with until they operate .
I was very relieved I had a mastectomy … my surgeon said that I was cancer free after the surgery , the chemo etc is all just a belts and braces approach .
It’s really frightening hearing that word “cancer” but try not to think ahead too much about what may or may not change after surgery at this stage , I know it’s easier said than done though x
Arty1
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