Just Diagnosed with High Grade DCIS

After suffereing with bloody discharge and a lumpy left boob I visited the doctor on my mums birthday - 9th October. After various FNAs, a core biopsy and a micro ductecotomy 2 weeks ago (and after the consultant constantly telling me not to worry its likely just a papilomma) on Thursday I was diagnosed with hugh grade DCIS. 

I always knew my own body and knew I wouldnt get an all clear result. Its been such a horrible few months as my Dad passed away from cancer on 1st November but my gut always told me I had something awful inside me.

Following the MDT I have been advised to have a wide exision on 8th January - if we can get clear margins then radiotherapy will follow and Tamoxifen if I test postive for it. If its not successful and we have no clear margins then I will need a masectomy.


Now because of my Dad dying, and not wanting to put myself at any more risk (especially with having young children) I really just want to have a masectomy. Im actually thinking of asking them to do a double masectomy as I have found lumps on my right side this morning too. This DCIS does not appear on any ultrasound or mammogram that I have had soit’s invisible and thats my worry. If it cant be seen then any follow up scans I have in future would not show anything untoward.


Even more worrying is that i have had thisconstant pain under my left arm and across my collar bone so Im convinced that something untowards is going on there too.


Does anyone have any advice at all? I honestly think I just want both boobs gone.

Hi Nashlel,
So sorry you find yourself here and I’m sorry to hear of your recent loss too. What an awfully tough time you’ve had.
I was diagnosed with a mix of high to low DCIS in October. It was wide spread (90mm) so I was always told a mastectomy was the option. At the time I was adamant that I wanted both breasts removed (nothing had shown in my right breast), I’ve a young daughter who’s too small to understand- I didn’t want to be dealing with this all again in the future when she had to go through it too. My surgeon and nurses have accepted it’s an option given my age and my anxiety about it coming back in my right, however they stuck to their guns and said one step at a time! I had a left mx with immediate recon 3 weeks ago and will decide what to do with my right when it’s all healed and settled in a couple of months.
I do actually feel like I’ve changed my mind on a double mx and am swaying towards their recommendation of a reduction and lift on the right to balance things out. 4 weeks ago I wouldn’t have thought I’d be feeling that way at all!
My advice would be to ask lots of questions and review all the options, but take it one step at a time. Get the side that needs doing sorted and then reassess your feelings, one step at a time. It’s all so much to take in and deal with, and I have found my feelings on different things have changed a lot throughout the process so far.
I hope that helps a bit, somehow! Sam x

I remember how much I wanted to learn about other people’s experiences that had a similar diagnosis to mine. I was diagnosed with 115 mm high grade dcis Dec last year. It was a real shock because I had several mammograms and ultrasound scans due to repeated bouts of mastitis but they had all been clear, it was only when a doctor decided to do a biopsy and then MRI they found the dcis. I had mastectomy and sentinel node removal in Jan .Luckily ( although I didn’t feel lucky at the time) it hadn’t spread to my lymph nodes so I have needed no further treatment.   As my dcis was only visible on MRI my consultant has agreed to include an MRI in my future check ups. I’ve just had my 1st one and everything clear. I wish you luck ,it’s a scary rollercoaster of emotions which I found took longer to heal than any physical wounds.xx