DCIS recurrence after 4 years

Former Member
Former Member
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I am new to this group. I had DCIS 4 years ago which the surgeon said would not come back after lumpectomy and radiotherapy. This April it returned over a larger area and I have now had a mastectomy and reconstruction. The results show the cancer was HER2 negative and that it was all removed.  There was no spread to the lymph nodes. However I was advised to have chemotherapy which I decided to do and had my first dose 2 weeks ago. So far I have not had any major side effects but as expected my hair has started to come out which I have found distressing even though I planned for it. I have my 2nd chemo this Friday and have decided to have my hair cut off on Saturday before it starts getting worse. I feel angry about everything that has happened and did not expect to go through this ‘adjuvunct’ chemo as it was not discussed with me earlier on as a possibility. Therefore it came as a huge shock when my results came through which took a long time after the surgery. Now I have found out that the plan after the first 4 chemo sessions over 12 weeks is to increase them to weekly for the 2nd 12 weeks.This is a bit scary and I don’t know what to expect when this happens.

Meantime if I can help anyone who is going to have a mastectomy / Diep flap reconstruction I will be happy to do so.

  • Former Member
    Former Member in reply to Deeds

    Hi Deeds Wishing you luck with your results. X

  • Former Member
    Former Member in reply to Former Member

    Yes, most cancers have a 5% risk of coming back, even given the best of circumstances. ‘Never’ is not a work breast cancer medics should ever use. Sorry it happened to you

  • Former Member
    Former Member in reply to Former Member

    Hi Anabrock thank you x

  • Former Member
    Former Member in reply to MickeyM

    Hi Mickey

    At least you now have a date, it's more reassuring as you prepare for what is to come. Keep calm and you will have a good outcome for your op. Is this for lumpectomy or mastectomy?

    If you have any questions do ask. I am a couple of week post op, so happy to help where I can.

    C x

  • Former Member
    Former Member in reply to Deeds

    Hi Deeds

    Did you have results yesterday? Hope you're alright?

    C x

  • Morning C, Thank you for your kind words. I’m just keeping everything crossed that the date gets firmed up. I have a mucinous tumour and two separate areas of different graded dcis with a small breast and so I always knew masectomy was needed and having read Queen Poppy’s and other peoples comments, I am reassured that it’s the only safe option for me.  It is for masectomy and diep flap reconstruction and the wait has been so hard, I just want the cancers gone and start on my recovery. 
    what did you have C and when? I assume you are on to next stages of treatment? I can’t begin to think about that yet and have decided I definitely need to wait for my histology post up before I even dip my mind in that area. Take care of you Mickey xx 

  • Hi again, I’m going to ask a really dumb question (lol). My cancers are in my right breast and fyi I currently have a frozen shoulder on the left (nice after effect from the second set of stereotactic biopsies under mammogram). Will both of my arms struggle after the masectomy and reconstruction? Thanks Mickey x 

  • Former Member
    Former Member in reply to MickeyM

    Hi Mickey I can understand you are worried about this while awaiting your surgery. While everyone is different

    my own experience  was that the surgery did not have a major effect on my arm. I did the exercises religiously and after being given permission by the Physiotherapist after 2 weeks to raise my affected arm I was fine and carried on with the exercises for a few weeks after to be sure. You will have lots of  physio support while in hospital and afterwards. Mine was a combination of face to face and in a video link group with others.

    I also did have some shoulder pain after the biopsy and lymph node extraction but went away after the operation, probably because of all the painkillers. However it has not returned.

    I am sure you will be fine and try not to worry. X

  • Thank you - I’m more worried about my other arm due to the frozen shoulder - fingers crossed that one won’t be impacted by surgery then. Thank you xx