DCIS but worried it could be worse


I was diagnosed with 6cm of DCIS last week and told I would need a mastectomy and to test my lymph nodes.  Since reading some of the posts on this forum I’ve realised I wasn’t given any information on what grade the DCIS is so assume it is high grade.  I think my main concern is that it is over such a large area there could be invasive cells in there too.  Would they have been able to see this on my mammogram?  Also, I had a very painful vacuum assisted biopsy in 3 places and now can feel a defnite lump in my breast.  Is this normal ?  Any support would be much appreciated as I’m finding my mind is all over the place imagining the worst.

Hi Alicia, I was diagnosed with high grade DCIS on 7th Sept after a mammograms identified calcifications 2 weeks before. I had 5 core biopsies taken then. The 2 week wait for results is the hardest part and your mind never stops imagining the worst. When i got the results of the biopsies and was told it was high grade DCIS i was also all9cated a nurse and was told to ask whatever i wanted to ask and ring if i needed to. I had a Wide Local Excision (WLE) on 19th September and then waited another 2 weeks for results. They found mine was 29mm of dcis and got mostly clear margins but I am having a further op to do a cavity shave on Thursday and hopefully get the final clear margin. My breast was sore and very bruised after the biopsies. I had it checked out because I thought there was another lump and my nurse assured me that It was bruising. Ring up or call in to your breast clinic and ask your nurse any questions that you would like to know the answers to. Or ring the nurses from this forum who are there to help to. Xx

That should say Ali not Alicia sorry xx

Hi Ali 

Firstly the lump you are feeling will probably be a haematoma and this is common as it occurs during biopsy . I was warned by radiographer it could happen . Its blood under skin which usually disperses as you move about . if breast inflammed , hot and you feel unwell then go to see your GP , otherwise ring your Breast care nurse . Iv found mine fantastic and after first being diagnosed I had so many questions to ask . Now Im down the line and have my plan Im much calmer . The other point you made was assuming its high grade … might not necessarily be accurate as mine is low grade and Im having a mastectomy …like you mine is 6cm x 2.5cm … Iv learnt that until the tissue from the mastectomy has been to histology the final outcome will not be 100% conclusive . But Im very positive about the mastectomy and would rather it be taken away now than live with the uncertainty of not being sure whats in there . You will feel much more in control once you have your plan Im sure . Keep talking and asking questions . Goodluck and big hugs xxxx

Feeling a bit anxious today . Im still positive over the op and wanting to get on with it , but Iv had some discomfort in my breast over the last few days and its making me wish the surgery was sooner  .I dont want to sound ungrateful because Im not and Im well aware the ladies with invasive cancer must come first …just counting the days and weeks now . x

Hi Steph. I think we all have good and bad days and swing from highs to lows. One day feeling very focused and positive and the next crumbling despair! Well I do anyway. Don’t apologise for what you are feeling, you are going through a tough time! The discomfort in your breast is probably down to any biopsies you’ve had which leave bruising and soreness. Don’t forget stuff has been taken out! If you are worried phone your nurse in the morning and ask if you can pop in or phone your gp and get checked. It may help to reassure you over the weekend. I had to cancel my re excision yesterday due to being so unwell with a cold so I have to face it next week now but I’m hoping to be fighting fit by then. Keep going Steph and be kind to yourself xx

Thanks for reply Ali … youre prob right about previous biopsies … Ill just get on with it as I dont think its going to make any difference now anyway . Not too long for my surgery and Im just wanting to get on with it . Hope all goes well for you . Take care . Big hugs xx