IDC/DCIS. More scared than ever now

Hi I was diagnosed on tues with grade 2 invasive bc and axillary involvement-lump of 3.5cm. I have today received a copy of the letter that has been sent to my GP. It says " GRADE II INVASIVE DUCTAL CARCINOMA WITH ASSOCIATED HIGH GRADE DCIS AND AXILLARY LYMPH NODE SHOWED MALIGNANCY."
I was unaware of the high grade DCIS , and whilst being given really encouraging vibes at the hospital ie WLE and rads, chemo unlikely-I am now so shocked and worried that it is not going to be as straightforward. The whole diagnosis suddenly sounds so much more serious now that I am scared witless. Has anyone else had a similar diagnosis and just had a WLE and rads?
thanking you


Hi Littlescoot
Can I ask how old you are? I was 44 when diagnosed with a grade 2 19mm IDC node negative, ER+ 8/8 and I was told from the outset that I would have chemo as it’s standard for younger women - under 50 is classed as young, also I’m very surprised you’ve been told chemo is unlikely with node involvement. Reading between the lines I think you’re afraid you may now have to? Nothing is certain but in my opinion I’d expect your oncologist to recommend it. Please don’t be afraid of it, it isn’t pleasant but is certainly doable, I worked nearly all the way through mine and am so glad i’ve had chemo, the thought of any stray cells in my body filled me with terror, I know now i’ve done everything possible to get rid of it.
Please feel free to PM me if you wish.
Take care
Lydia x

Hello Littlescoot

I was DX in March 2010, and had WLE and SNB on both breasts then more nodes out on the right hand side. I had Rads but no chemo because my cancer was 100% ER+ve i.e. sensitive completely to oestrogen, so now I take aromatase inhinbitors to knock out any oestrogen so that any stray little b#ggers can’t grow, will just curl up and die. Chemo would not do anything extra for my case.
Find out about ER PR and HER positive percentages - if they are low, you will need chemo to protect ALL of your body, and that’s what most people need.
Also I was 62 when DX and I know age makes a difference to what your team will recommend.
Very best wishes - keep using this site, it’s great, and there are lots of folk who can tell you stuff that is really useful

Hi lydia and grumpy many thanks for your replies. I am 46 so I’m on the young side. I do wonder if things were being broken to me one stage at a time-however I am in the medical trade and deal with leukaemias on an almost daily basis and I was so calm when he told me that I sort of expected to be told the whole gamut in one go. I guess I just have to wait until the WLE for confirmation of ER status. What does puzzle me is that about 3 years ago my periods went erratic to almost stopping-get the symptoms but nothing else (this means im being a ratty cow for no reason) I was tested for being pre-menopausal and most definitely wasn’t then and am not now but I do wonder if this will have any bearing on the oestrogen status of my lump. Probably putting 2 and 2 together to make 5 but it is something that is bothering me. I know I’m still in shock as although I’m so scared and panicky ( I wake up during the night unable to breathe) I cannot let any of the emotion show at the mo but my boat was rocked seeing it in writing to day
i have also found it really hard buying a Xmas card for my OH as they all go on about the magic of the year carrying on into Xmas and hope you get the Xmas you deserve etc. he is amazing and certainly doesn’t deserve a wife got cancer for Xmas!
Sorry just need to moan occasionally

M xxx

Hi Littlescoot, after my WLE and SNB I was diagnosed with IDC grade 2 with 3/5 nodes affected . I knew that I had to go back for a full node clearance but it wasnt until like you I got a CC of the letter that they sent to my GP that I knew about the DCIS . My letter clearly states "Grade 2 IDC mixed with intermediate DCIS amounting to 30mm. This freaked me out and I was upset that the Surgeon didnt say anything when I went for my results. I havent had a chance to talk to him or my BC nurse about it yet as my second surgery was canceled due to me having a cough and cold. I Have since had a CT scan and bone scan that both came back clear so I’m not worried about that anymore but i’m still miffed and still yet to have an explanation as to why they missed that bit out of the results when they told me. I’m scared to google the mix of the 2 different breast cancers and cant seem to find anything on here about it. I shall watch your thread with interest

I guess I just wanted you to know that you are not alone

Funki x

Littlescoot and Funki, I can understand you both being upset that you weren’t told about the DCIS, I was borderline for HER2 and my surgeon failed to mention that which was a bit of a shock. However, the DCIS itself as I understand it is non invasive and not uncommon to be found alongside an invasive cancer, sorry, i can’t help with the treatment, are they proposing further surgery to excise the DCIS?

Hi Chascat, Thank you for the reply. They managed to get my lump out with clear margins so I’m presuming any DCIS was within the lump along with the IDC?.
I have to go back for a full node clearance just after Christmas as 3/5 nodes were affected.
Funki x

Hi there i am a grade 3 invasive ductile with lymph involvement, i am also pr & er negative :frowning: so not sure what this means for me??? not sure of my her2. I am also 21 weeks pregnant so very very scared at mo. I am booked in for a mx on thursday with lymph node clearance. I know i will have to have chemo also xxx

Surgery, chemotherapy and radiotherapy do not get rid of all your cancer cells! Not wanting to scare people but, the truth is that there are cells that lay dormant and they can start new cancers and unfortunately, all the treatments we are going through ( I was stage 3a, 5.1cm IDC with a 3cm DCIS ) so, gone through surgery, finishing my EC/taxol chemotherapy tomorrow after 4 months and will do my radiation on top plus aromatase inhibitors as soon as…
Regular testing your markers and regular check ups are one way of keeping on top of it. But, in my opinion, the most important thing is to keep your body very very strong and able in order to kill those cancers when they are young. Exercise, good eating ( loosing weight if you have extra ), peace of mind, live happy lives, all help keep things at bay.
Good luck to all of us!