Widespread DCIS

Hi, I'm 47, married and a Mum to a 10yr old. After having a few months of nipple discharge, I reported it to the gp in my HRT review as I'd assumed it was something to do with that. Then referred to breast clinic. After a mammogram was advised of some calcifications in left breast. Since had a needle biopsy which was inconclusive and then a vacuum biopsy which was positive and therefore diagnosed with DCIS medium grade. As it's so widespread it's likely I'll need a mastectomy but just waiting on the results of another vacuum biopsy to confirm. Just found my way to this forum googling looking for information and personal experience of DCIS, mastectomy, reconstruction options etc. I have quite a number of other health issues already, including osteoarthritis and fibromyalgia so this is just another thing to add to a very unlucky list and I feel the more informed I am the better I'll feel but we'll see. I welcome any and all advice x

  • Hi there

     sorry to hear you have got this diagnosis. On the bright side if only DCIS prognosis is very good and treatment can be fast. I am 46 single mum off 4 year old. Diagnosed September, single mastectomy October and no further treatment needed. Recovering at the moment. 

     

    due to my silicone allergy I couldn't get implants so only option was diep flap. Really wanted it but when met surgeon there was a 5 week wait for it. So I opted for earlier mastectomy. Recovery from diep is much more extended and I was concerned about The operation itself. 
     

    you will likely have to go for an mri aswell. (I was originally advised lumpectomy but following mri it changed to mastectomy.)

    i am still thinking about delayed recon with diep flap though. 
     

    lots of women get recon and are very happy but others are happy to stay flat. So personal. I joined a Facebook breast cancer uppity group and you can get lots of opinions there. 
     

    good luck and feel free to dm xx

     

  • Hi there, I was wondering if you'd been given the breast reconstruction leaflet? If not you can go to breastcancer now.org website and type in breast reconstruction and it will come up. If you haven't seen it, I found it really useful to start making my decisions around reconstruction.  I myself have an invasive lump and two areas of DCIS in the same breast and so masectomy is my required surgery. Two months post diagnosis, I'm waiting with baited breath for my surgery date. I'm happy if you want to discuss further on private messaging or here. My advice would be to consult your BCN, if you have a good one that's great, draw up a list of pros and cons for your choices and ensure you're happy with your choice. Once you've made your decision, listen to anything consultant says etc, but if they try to sway you to their own agenda without good reason, stick to your guns. Sadly I had that experience only yesterday and it's left me quite fragile again today. Take care of you, virtual hugs Mickey x 

  • Hi

    i was diagnosed last week with a 13cmx6.5cm Intermediate DCIS. I have been told I need a mastectomy due to the size. I'm waiting on a date to see the oncoplastic surgeon. Do you know how long you have to wait for the operation 

  • Hi, 

    Sorry to hear about your diagnosis. 

    I was diagnosed with DCIS in Feb and had surgery about 4 weeks later. Mine was lumpectomy rather than mastectomy but I imagine wait times would be similar.

    Wishing you all the best x

  • Hi there, I'm really sorry to hear this and hope you are finding your way with the news, never easy. To be honest, I think it very much depends on where you are and whether you are having a reconstruction as well. I had a diep reconstruction and due to needing extra biopsies etc I did have to wait a while (almost three months) - but it's not usually that long. There was an additional covid delay last year. Ask your plastic surgeon what current waiting lists are - but it's important that despite waiting you feel comfortable with your choice of reconstruction or not - so please don't feel rushed in any way. It is huge having a masectomy in my opinion and so you need to feel confident that you are making the right choices for you. Here any time if you want to chat about in on forum or in private message. 
    Sending massive virtual hugs - Mickey xx ️

  • I would like reconstruction but think I'm overweight and reading you can't have it if you are. Thank you for your reply x

  • Hi, I don't know the specifics about weight for all types of reconstruction. It's good you're looking into it, so no more nasty shocks if that is the case.  However, it's definitely worth having the conversation with the plastic surgeon. There may be other options for you. Keeping my fingers crossed for you. Have you looked at the breast cancer now reconstruction booklet? If not,  it is available to download on their site. Another virtual hug Mickey xx ️