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Dcis

nannabear
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I’ve just been diagnosed with dcis high grade my first thought was a small operation to remove it but my surgeon offered a mastectomy my initial reaction was no too extreme but having looked at all the information there is am thinking it might be best anyone else gone through this and what did you do 

  • Hi Nannabear, 

    Sorry to hear that you've been given this diagnosis. It's inevitably a difficult time when there's decisions to be made about what to do for the best regarding treatment. 

    I've had a look through the forum and I can see that [@Magpiemaggie]‍ and [@Irene70]‍ have both had DCIS. As I've tagged them in to the post here hopefully they'll pop along to say Hello and share their experiences. 

    If you think it would be helpful to talk things through with one of our team of nurses then do give them a call. They're available Monday to Friday 9am to 5pm on 0808 800 4040 and I'm sure they'll be able to offer some information and support. 

    I hope this helps. 

    Best wishes, 
    Jenn
    Cancer Chat moderator

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    Hi there

     I was diagnosed with high grade DCIS last year. It was extremely difficult to choose which surgery option to go for. I was given two options, 1) lumpectomy with reduction & reconstruction or 2) mastectomy. Decisions are always individual and my choice of surgery won’t appeal to all but after a great deal of research I chose to have wide area incisions, for the following reasons;

    1) option 1 would be a large operation, I was worried about the surgeon reconstruction current breast tissue without knowing whether she had achieved clear margins, i was scared this option would scatter the DCIS around my breast. A study I read last year showed a recurrence rate for breast recontruction was something like 7.6% whereas recurrance for invasive was 1%. This proved to me my initial fears were valid. 

    2) option 2 was a no go as I felt I could not justify losing my breasts to stage 0 disease. I was also concerned about not having radiotherapy after mastectomy as I would want that as there is no guarantee the surgeon can remove every cell. I also felt if cancer returned in the future I would rather have it return with breast tissue rather than on the chest wall - the latter is more difficult to remove and obtain margins.

    So my decision was a no brainer for me, wide area incisions would allow me to know what the margins were  and the extent of the disease, I was secure in the knowledge that I could have more surgery in the future to achieve a better cosmetic result.

    Post operative pathology showed, alongside, the DCIS, invasive ductal and lobular cancer. This finding meant that I needed another op to allow the surgeon to achieve a bigger margin but other than that it did not change my treatment plan.

    I am happy with my decision, the surgeon did a fantastic job. 

    No one can make the decision for you as it really is down to individual preference but having been in your position I would advise that you think very carefully about what’s best for you, don’t let anyone rush you into a decision - it’s your body - you are in charge.

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    Hi Nannabear - so sorry you are going through this. I'm sure you're in turmoil right now and that is completely normal.

    I was diagnosed in November 2017 with high grade DCIS but mine was in a cluster and when I asked if I needed a mastectomy was told it wasn't necessary. If there are areas of DCIS throughout the breast then, as I understand it, they will offer mastectomy. With the high grade there is more chance that it may become invasive in the future. I had a wonderful medical team who I totally trusted and let myself be guided by tham.

    What is important to remember is that DCIS is totally contained in the milk duct. It's non-invasive, not life threatening and is totally treatable. I never lost sight of these facts throughout my treatment.

    I had a lumpectomy in January last year followed by 15 radiotherapy sessions over February//March.My surgeon said I would be cured after treatment and they don't say that easily with cancer. I'm now on a patient led follow up programme which means that they don't send for me but they are just at the end of the phone if I have the slightest worry about anything. I als have the reassurance of annual mammograms for 5 years.

    Have your questions written down and ready for when you next see the surgeon so that you can make an informed decision on the way forward.

    I hope my words help. Please let us know how you get on and I'd be happy to answer any other questions you might have if I'm able to.

    Sending hugs........Irene xxxx

     

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