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

Parents
  • HI Jane,

    Avery warm welcome to our forum.

    I am sorry to hear of all the symptoms that you've had with your breast. I am not a doctor, but I understand that not all cancers show up with a mammogram or ultrasound and may therefore need additional tests. I had mucinous breast cancer, which didn't show up on mammogram either. I have had 2 bouts of this, 1 year apart. The second time I had a double mastectomy. Unfortunately, due to previous non-cancer related surgery, I was unable to have reconstruction. That was all 14 years ago and I still lead a busy and fulfilled life.

    It is good news that you don't appear to have any spread. The decision about reconstruction is always a difficult one. There does seem to be quite a long wait for a delayed one, although waiting times seem to vary throughout the country. Have you been told how long you might have to wait for a plastic surgeon to become available? It would certainly be easier to have everything done in one go. Try to tie your care team down to a specific time scale for immediate reconstruction before making a final decision.

    I am not aware of any age related restrictions for Diep. It is probably more important that the skin is healthy to make this a viable option.

    Whatever you decide, I hope that you reach the right decision for you. Do you have a date for your mastectomy soon?

    Please keep in touch and let us know how you get on. We are always here for you.

    Kind regards,

    Jolamine xx

  • Hi there , so sorry to hear your diagnosis . Looking on here it seems apparent that a delayed reconstruction is classed as “ cosmetic” ridiculous I know , and therefore ladies have been waiting about two years for surgery . For immediate reconstruction and DIEP they need two surgeons . Having a DIEP requires enough abdominal tissue to make a new breast and age is not a barrier. It’s a big decision for you , but I advise to do a little research first . I wish you well x Let us know how you are doing. 

Reply
  • Hi there , so sorry to hear your diagnosis . Looking on here it seems apparent that a delayed reconstruction is classed as “ cosmetic” ridiculous I know , and therefore ladies have been waiting about two years for surgery . For immediate reconstruction and DIEP they need two surgeons . Having a DIEP requires enough abdominal tissue to make a new breast and age is not a barrier. It’s a big decision for you , but I advise to do a little research first . I wish you well x Let us know how you are doing. 

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