I have been diagnosed with precancerous Paget's disease in my nipple with another precancerous area about 0.5cm behind it. As far as I know some people, even breast care nurses interchange precancerous and DCIS but it is still cancer, just an early stage - or at least that's what I've been told. I have been 10 weeks since diagnosis and due for surgery in two weeks time, saw surgeon today and have to phone and confirm what op procedure I want. I think from what I've been told you do have time if its at the precancerous stage so perhaps ask for a second opinion?
No radiotherapy either time. First time due to low grade and 4mm only it was unnecessary. Second time was 35mm and high grade , so much more likely to become invasive, if I had had another WLE I would have had rads but because of mastectomy and clear margins, no rads needed I was told ( clear sentinel nodes). After second diagnosis I started tamoxifen. Yes, I had drains both times, they were fine, removed at day 5 each time.
Unfortunately i now have another breast cancer in the other breast....invasive this time, stage 2 .... so having chemo and rads this time.... so am very glad for my yearly mammogram otherwise it would not have been found for a while as it was not palpable.
Take good care x
I think it is confusing when some call it pre-cancer and others early stage cancer (or whatever). The breast care nurse kept insisting it was pre-cancer and then my GP wrote that I had breast cancer on my sick note for work.
I was diagnosed with DCIS in July after I found a small lump. An MRI scan revealed another area of concern that was biopsies and found to also have cancerous cells in it. I had a left breast mastectomy on 25th August. I am speaking to my surgeon tomorrow to find out the result of the sentinel node biopsy.
Thanks Becky. I am terrified especially in these current times when you need friends and family but have to self isolate. Makes the situation a 100 times worse. I've been told non-invasive, oestrogen receptive (hence been on Letrazole for 6 months).
Thx KitKat. Did you have radiotherapy after 1st WLE. How large was DCIS second time? I have been taking Letrazole for 6 months after operation cancelled in March due to lockdown. Do you have to take any medication after your mastectomy? I am concerned about the drains ... did you have those?
I had a similar experience with my diagnosis of DCIS earlier this year. Original doctor referred to it as pre-cancerous.’ But then everything moved so fast with scans and biopsies, and 6 weeks later I was in for a mastectomy. I was super confused, and at my pre-op chat with the breast care nurse a few days before my op I asked her ‘do I have cancer?’ And she said it’s pre invasive cancer and that they treat it with the same level of severity as invasive cancer. I had a large area (85mm on final histology) of high grade dcis so I think the risk of them finding invasive cancer was high, but I was very lucky that this was not the case! The surgeon told me there was a 75% chance of it becoming invasive in my lifetime.
Do you know what grade yours is? I think mine was sorted ASAP, partly due to covid and also because it was large and high grade.
I was absolutely gutted when I found out I would need the mastectomy as it was my worse case scenario, but when I woke up from the op I was mainly relieved that it was gone!
hope that helps a bit, keep us updated!
i have had DCIS twice ( 2012 and 2018) , first time a WLE and 2nd time a mastectomy.
I have seen it referred to as pre cancer on some US websites....but if you look on this site, and many others, it is very definitely ( early) breast cancer...it is usually referred to as stage 0 and is non ( or pre) invasive and contained in the ducts as it has no ability to spread outside the ducts at this point.
i remember being told first time round when mine was as accidental find of 4mm low grade DCIS, that there was no urgent rush to have it removed and he was happy for me to wait 4 weeks as I was going on holiday ( he had first offered me surgery in 11 days).
Wishing you well with your surgery
Had a lumpectomy & radiotherapy in 2005. Routine breast screening in February showed 7mm in same breast (tiny as surgeon said!). They say DCIS but because of my history they say they cannot do another lumpectomy and I need a mastectomy. Reluctantly went for operation on Monday but they couldn't do because of high temperature even though Covid test negative. Saw a different surgeon yesterday. He said I hadn't got cancer, it's pre cancerous and why am I rushing. I am booked in for mastectomy next Wednesday but he said I have time to change my mind. I am totally confused. Anyone else had a similar experience?