DCIS

Hi Nikki - I'm sorry you have to be here at all but I'm glad you found your way here to educated yourself.  Let me just say, up front, that if you really want to understand DCIS do a "search" on this forum for "Beesie" she is the resident "expert" on DCIS... many other women here can help as well and like you have come by their education thru a diagnosis of DCIS..

The grade is very important within the pre-invasive diagnosis of DCIS as is the size of the lesion itself.  There are many other factors that will become important but those are the first 2 most important pieces of your puzzle.  So if you were "told you have dcis" was that through a biopsy?  Because truly this can't be dx'ed through a mammo or an MRI - it can be estimated but not fully confirmed.. If you have had a biopsy then first thing to do is get a copy of the pathology report.. That should let you know what grade you are, size of lesion (assumption based on films) whether the lesion is estrogen or progesterone positive and whether it is HER2+ (Her2 testing isn't always done but you can make a request for it to be done even if you have already had the biopsy).  

You will hear a lot of information in the next several weeks and you will be pointed to many specialists, but the best thing to do is really "hear" your own voice.  That sounds like a simple thing but once you speak this out loud everyone will have an opinion and that will confuss and muddy you own perspection on this.  You will start getting assigned to 'specialists" so my advise is to include a psychologist into that mix - their job is to keep you focussed on what is in YOUR best interest... Even the people you love, out of their love for you, will have very strong feelings about what you should do, but a psychologist will keep you focussed on your own needs and wants..  Keep checking in here and you will get good information... you are at the very beginning of a long and taxing journey - get yourself help now before the confussion takes over and fear determines your outcome... Let me know if I can help and I'll do the best I can.. Best, Deirdre

I went back to check my pathology report and actually the "size" was noted on the "surgical notes" and not on the pathology report.  You will probably get everything else on that report too...  Your surgeon will hand you a copy upon request...  but I would give this a day or so to get the estrogen/ progesterone results back before asking..

An MRI that occurs after a biopsy is USUALLY so the surgeon wouldn't be finding any surprises when he does the lumpectomy or mastectomy.  Your grade is a bit of a problem because it is considering "safer" than grade 3 and really they can't tell you much about grade 2.  I did some research, and keep in mind you can find almost any position you want within the research for dx'ing DCIS because it is a bit of problem dx in medicine.  You need to make sure that you have all of the information so you can be educated at the appointment.  Most of medicine is encouraging lumpectomy for grade 1 and 2 and here's the tricky part - many still want to do radiation along with the lumpectomy.  But you have a choice of NOT doing radiation along with it and then do "watch and wait".  This means that you would be watched very closely (3-6 months) with mammo's and MRI's so that they could "caught" anything that might crop up because of not getting the entire lesion...  This will become you call so to speak, so try to find out how you "feel' about lump. vs mastectomy and radiation and possibly Tamoxifen (an estrogen stripping drug that you might choose to take for 5 years - it comes with a wild list of possible side effects)...  I really can't tell you more without influencing you and at this stage I don't want to do that.. Again it is time for you to set up an appointment with a therapist and REALLY understand your own feelings about what your next step will be.  Good luck and I'm not opposed to answering questions but I hesitate to state what "I" did vs someone else because all selections are valid for individuals choices.  Good luck and keep us informed..  Best, Deirdre

Sorry I didn't finish a sentence earlier on so let me do that now  "I did some research..." and what I found was that medicine doesn't truly understand the progression of DCIS.. does grade 1 get stronger to grade 2 and then on to grade 3..  and since they don't really understand that to be the case they really can't tell you that grade 2 is stronger than grade 3 or that it will eventually turn into grade 3 and then onto invasive cancer... I personally think that is so since my lession had both grade 2 and grade 3 in the tissue that they tested..

Also, the size is determined by the pathologist's when he/she tests your tissue stamples...