New diagnosis of DCIS

Hi!

I've just joined as I've just been diagnosed with dcis.

About 18 months - 2 years ago I thought things felt wrong but no lumps, the GP reluctantly sent me for a mamogram which showed nothing. Then I got a discharge from my nipple, GP referred me and the consultant did another mamogram and said nothing to see but come back if it gets worse. Six months later it bled again so I went back again but still nothing on mamogram.

I saw another consultant who did yet another mamogram and biopsies, still nothing. Then he sent me for a MRI scan and it's DCIS but now so widespread I need a mastectomy! Anyone else have this sort of problem? What's the point of a mamogram? Is this normal for this sort of disease?

I've now had further biopsies which show it's still ductal and no sign of it having spread beyond the ducts yet but if I wanted an immediate reconstruction the surgery, including the mastectomy, would be delayed until there's a plastics person available, which will be several months away. Given the rate it appears to have developed I don't want to wait for the mastectomy. However, they say it will be well over a year for delayed reconstruction and this wait seems to get longer every time I ask about it. Has anyone had delayed diep reconstruction? Are there any age related restrictions for diep? Just about to have surgery and not sure what to do. 

X J

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  • Hi Jane

    I hope you are well and recovering from your surgery. I found your post so similar to how I am feeling.

    I've just joined as I have been diagnosed with invasive ductal cancer. Like you and others, the cancer was missed when I first saw a consultant in September 2022 and I was told the lump was prominent tissue. After speaking to my GP I was referred again in October 2023 and the 1st biopsy was clear. A 2nd biopsy and MRI,CT scans showed a malignant tumor 6 x 4 x 2cm, which at 38C is most of my bust and the cancer is also tethered to my skin. The scans show that the cancer is currently contained in the bust but as spread outside of the ducts. No cancer is showing in lymph nodes at the present time.

    I have now been referred for a mastectomy and maybe immediate diep reconstruction.  I am awaiting results from onco type dx test before a final treatment plan is made. Although I would prefer an immediate reconstruction, like yourself I am concerned about waiting times and cancer spreading. I have not been given a timescale as yet, but everything is going round and round in my head. 

    Any advice would be appreciated, thank you xx

  • Offline in reply to SMOR

    I’m so sorry to read your posts . Please be aware that if you go for a delayed DIEP it’s about a two year wait , depending on where you live . They have not caught up yet after Covid so have a backlog , and ladies who have an immediate DIEP take priority . Age is not a barrier but general fitness is , as well as enough tummy to make a new breast . Xx

  • Offline in reply to LCR

    Thank you. Two years seems an awfully long time xx

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