Hi, I have joined the forum to get a bit of support really, I have DCIS and am just waiting for some results and none of my freinds of family know what to say when i am sitting worrying about it every night!
I am 28 years old and was diagnosed with DCIS in August. I didnt have any lumps or anything but had a condition where i had imflamed ducts so they removed the ducts and after testing them said i had Low grade DCIS.
This was not a huge concern at first as it was low grade and they had removed the ducts but they sent me for a manogram to check if there was any left still in the ducts.
The manogram came back showing extensive calcifications outside the ducts and so then i have had a core biopsy ( wasnt very nice!)
I am just waiting for the results of the Biopsy to see what these calcifications are. I have been told that it is likley to be related to the DCIS they have already found and i need to start thinking about the Masectomy as a likley option.
Thats all i know for now but after looking on the internet i have been getting more and more worried about the possibility of this being invasive breast cancer.
The reason i am worried about this is because from what i can see DCIS is only non invasive as it is held in the ducts but the calcifications they have tested are outside the ducts and i have been told are likley to be linked to the dcis.
Anyway everyone is saying stop worrying and see what tuesday brings when i get the results but its easier said than done so thought i would join the forum to see if anyone else has experienced this to know im not the only one feeling like this and worried about the future and the operation etc etc.
Laura loo - so sorry you’re in such a rubbish worried situation, i’m sorry i can’t answer your question re invasive cancer but i wanted you to know you’re not alone in worrying about it… I too am awaiting a mastectomy for widespread dcis and have also been reading lots and worrying about the possibility of invasive cancer. I used the “ask the nurse” service on here and was told that while there is on going research into this - there hasn’t been a lot of trials to date. One small trial that has been done found 29% invasive cancer found following mastectomy for DCIS. My breast care nurse would not be drawn on the subject at all preferring to say “we just don’t know until the pathology comes back” I understand that clinicians do not want to give false hope but i realy didn’t find this helpful and i feltworse than before we spoke on the phone. Like you the DCIS is not showing on the mammogram, although the initial calcifications did show but it would appear most of the calcifications were removed at biopsy so you can imagine how shocked i was at the result of the j wire localisation to hear them say i had widespread dcis. I have a friend who has subsequently explained to me why this might be… but its still hard to take that its lurking there and not showing on the mammogram . Please keep in touch iand i hope you get some answers re the specifics you have asked about. L,x
Aww no sorry to hear that. Good news about there being no invasive though but a shame your having a bad time with it. I’m keeping my fingers crossed for Tuesday and hopfully no bad news xx