Thanks for posting.
It’s understandable you are concerned that there could be other areas of DCIS in your breast that have gone undetected on mammogram and ultrasound.
Most people diagnosed with Paget’s disease will have ductal carcinoma in situ (DCIS) – somewhere in the breast although I understand your surgeon has said this is unrelated in your case. DCIS is typically seen more easily on a mammogram rather than ultrasound. However, whilst mammograms are a good screening tool, we know they won’t pick up all breast cancer. This may be due to the type of cancer (some are more easily seen than others) or because the disease is still microscopic and not yet large enough to be detected.
Whether detected prior to surgery or found when the tissue removed is examined, there is a possibility that DCIS can become invasive if left untreated. This is more likely with high grade DCIS. Undetected DCIS can also become invasive.
It’s not possible in any individual to guarantee there is no other microscopic disease remaining following surgery. For this reason radiotherapy is offered in many situations to treat the remaining breast tissue and offers the option to avoid the loss of the breast.
Some people may feel more comfortable knowing the whole of the breast tissue has been removed. However doctors always need to consider the possibility that doing a mastectomy may mean removing a breast that turns out in fact to be free of disease.
For some women this could understandably be very distressing, so where appropriate doctors will offer routine surveillance as an alternative and ask someone to choose what they feel is right for them.
This does sound like something you need to explore in more detail with your surgeon. Perhaps you can ask them about the benefits and drawbacks of a mastectomy or yearly mammogram in your individual situation (bearing in mind, as you say the DCIS was not detected on the mammogram). You could also ask about any benefit of having an MRI of the breasts instead or as well as a mammogram to monitor for changes. An MRI may provide more detailed information about breast tissue. Or some people consider asking for a second opinion. This is something you may wish to explore.
You might find it helpful to talk to someone who has had a similar decision to make. Our Someone Like Me service has over 200 volunteers who have had a personal experience of breast cancer and are trained to provide support. The volunteers are able to talk to you by email or telephone. Alternatively you could post here on the forum.
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Breast Cancer Care Nurse
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The tissue removed 2 x weeks ago when I had a central excision for Pagets revealed a 22mm high grade DCIS - unrelated to the Paget's according to the surgeon. It came out with healthy margin.
This DCIS did not show up in mammogram or ultrasound prior to op, only in the tissue check post op.
Options given to me now are to either go back for a mastectomy or just rely on yearly mammograms.
My question......... if this high grade DCIS they found on op went unoticed in the mammogram / ultrasound who is to say there are not other areas in the remaining breast tissue, and if there is, then surely in 12 months it could turn invasive? Thus surely it is a no brainer to have a mastectomy.
Or am I missing something? Why would they just let me go away for 12 months knowing that somewhere else in my breast there could be another area equally undetected by that mammogram I had? Puzzled that this was even an option.
Any more information you can give, gratefully received.
For example, if it is fact that uncalcified thus undetected hight grade DCIS CANNOT possibly turn invasive before being found on a mammogram then I woul stick with yeary checks, but I doubt this is a fact.