DCIS NOT DETECTED IN MAMMOGRAM ONLY WHEN OPERATED ON FOR PAGETS

Diagnosed with breast cancer DCIS/LCIS
1

Hi

Just wanted to see general consensus on decision needed.

I had my operation to remove Paget’s (central excision lumpectomy) on 20th December. Prior to the there was no sign of any DCIS on any mammograms or ultrasound.

Pathology report on removed tissue finally through and just been told yesterday that they found 2.5cm high grade DCIS within the tissue removed with a good border. So I have been given the option now of going back in for a mastectomy or just monitor with yearly mammograms.

Well considering this one never showed up on the mammogram or ultrasound, I don’t think I can risk relying on mammograms to find anymore DCIS, and who is to say if there is not another patch lurking in the rest of the breast. So most likely will go back for the mastectomy to avoid any worrying.

Overnight am now thinking I should just be done with it and have a double mastectomy, as if I have any DCIS in other breast they also may not show themselves and then may not show until it gets to the invasive stage - I know not all DCIS turns invasive, but considering I had high grade unseen on mammograms then I cannot trust yearly mammograms surely?

If I had not had Paget’s then the DCIS would have remain unseen for another year and possibly turned invasive by the time it shows on a mammogram. Or am I overthinking this? Surgeon had said the DCIS and Paget’s was unrelated.

Surgeon doesn’t seem to think double is necessary, as low percentage of people get BC in 2nd breast, but then a low percentage of people with BC have Paget’s so I can’t cling to that one!

Here in the UK MRIs are not routinely used for breast screening, apparently yearly MRIs are not recommended if not necessary as recent medical info shows the dye collects in the brain, I did ask if that was just a COST ISSUE for teh NHS but they said definitely not.

So to be free of worry I feel I should just get rid of both. I am not a breast person, so that does not really bother me.

Any thoughts / insights / advice welcome, many thanks.

Eliza

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Hi Eliza - My ‘story’ is that I was diagnosed with IDC in my right breast in August. There were a number of different area’s of concern of IDC and other suspicious cells and I had a right sided mastectomy on 24th Sept. I’d had numerous mammograms, scans and an MRI done on both breasts during all the investigations and DCIS was never mentioned. After the mastectomy I got the histology results and it said as well as the IDC there was DCIS - intermediate grade. I was really surprised when I seen this as there had never been a mention of it ever.

I asked my consultant about it and she said DCIS doesnt always show up on mammograms or MRI’s. I asked her how do I know I haven’t got DCIS in my ‘good’ breast that might become invasive and she said it would be monitored closely at my yearly mammograms and any slight change would be investigated fully at that stage.

I must admit I was a bit concerned at this - it’s as if I have to wait until, if there is DCIS in the good breast, it possibly becomes invasive before they do anything??? I thought as I had DCIS in my right breast and it obviously became invasive there was a good chance of the same thing happening in my ‘good’ breast?

So nothing will be done about this and I just have to wait until I’m due a mammogram in August this year to see if anything has changed.

Love, Helen. xxx

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Hi Eliza, I had DCIS 11 years ago. I was extremely grateful that the surgeon didn’t perform a Mastectomy at the time and that he opted for a breast conserving lumpectomy (I am a breast person sadly). I’ve recently (last week) been diagnosed with Paget’s Disease ( which often doesn’t show on mammograms) and have a Mastectomy planned for May…I’m now going to speak to the surgeon to request he removes both breasts - not because I’m worried about recurrence - I’m tired of being lopsided and would welcome the chance to wear strappy tops and boob tubes - every cloud and all that…