Comedo necrosis

Help what on earth does this mean? I have just been diagnosed with intermediate nuclear dcis with comedo necrosis. Invasive ductal carcinoma grade one (provisional). Is that two different diagnoses from the same biopsy? When I was looking at this site before my results I found it reassuring but now I’m completely terrified by the stories of repeat wle etc. Also I thought mine was small they said just under a cm. (I can barely feel it and I don’t have large breasts) but other people seem to have much tinier lumps. Aaargh panicking!

Llangal

 

I honestly do not know what your diagnosis means but just to let you know mine was a 17mm tubular bc, grade 1.  I had it removed 12 months ago tomorrow, had a sentinel node biopsy, they achieved clear margins with the op and there was no lymph node involvement, exactly as the told me on diagnosis.   I did not even know I had it, I did not feel a lump it was found through a routine mammogram.

 

It is scary and all the words they use sound scary but if you give your breast care nurse a call tomorrow and she will be able to explain it all to you and answer your questions. Give yourself time to take it all in.Have they given you a treatment plan?

 

There is leaflet on the information and support section at the front of this webpage about understanding your pathology report the link is

 

breastcancercare.org.uk/information-support/publication/understanding-your-pathology-report-bcc161

 

Sending you a hug

 

Helena xxx

Hello Llangal

 

I am a DCIS/small invasion ‘girl’ too who is just going through treatment so am a bit further down the road than you.  I too was panicking at the stage that you are currently at but once I had my treatment plan in place, I was more reassured.

 

DCIS is graded into low, intermediate and high - the last being the most unfavourable. Yours, like mine, also has comedo necrosis.  What this means simply is that the nasty cells in your milk ducts could not thrive and have died off leaving debris behind.

 

Sometimes DCIS is also accompanied by an invasive ductal cancer.  This is what was also found in your biopsy and this ‘lump’ will be tested for its hormonal characteristics.  Your treatment plan will most likely be based on these findings rather than your DCIS - that will be taken care of incidentally when your lump is removed.

 

Screening unfortunately is not brilliant for determining the true size of DCIS so some ladies do need a second op in order to obtain clear margins.  My surgeon told me that about 1 in 5 cases need a second op.  That leaves a lot of ladies that don’t need one - the odds are greater for you to be in that category.

 

As Helena has put in her post, do contact your nurse and ask to go through your details.  I think I only heard about every third word when I got my diagnosis and it was useful to have it repeated and to ask questions.

 

I know panicking is a very natural and instant reaction to what you have been told.  We’ve all been in your shoes and it really does become more manageable.  Big hugs.  Ezzie. X