My breast cancer should have been "in situ", meaning contained and non invasive.  After all comedocarcinoma is usually not invasive.  But seems there are cases where usually in-situ breast cancer does become invasive.  And if its going to do that, Comedocarcinoma cells move fast.

My breast cancer had already burst its containment, became malignant and is 2.2cm (UPDATE: upon mastectomy it was found to actually be a 3cm).  Once it becomes invasive the diagnosis is Invasive Ductal Carcinoma (IDC) and mine is of the Not Otherwise Specified type (Nos).  So I have IDC Nos.

IDC Nos has subtypes.  If you have features of several it is called a mixed subtype.  My pathology report concluding I have IDC Nos mentioned features that fitted 3 of these types of cancer cells: comedo, mucinous, tubular.

These subtypes are apparently rather rare:

Comedocarcinoma accounts for only 5% of breast cancers
Mucinous accounts for only 3% of breast cancers
Tubular accounts for only 2% of breast cancers

Each of these tend to have different causes, treatments.  But I became interested particularly in the Comedo type mine had started out as and how had it become invasive and diversified.

In terms of DCISs (In Situ types), one can have the comedo type  or non-comedo type.
The non comedo type does not have internal necrosis.
The comedo type contains dead cells inside, called necrosis.  

The non-comedo type is more common with a good chance of no return of cancer within 5 years of treatment.  The comedo type is far less common, an incidence of around 5% of breast cancer tumors but has a high incidence of recurrence within 5 years of treatment 50% chance of recurrence.  Other studies show a 5-10 year recurrence rate of 13-38%.

The non-comedo and comedo types may have different hormone receptors so require different treatments.


Comedocarcinoma itself usually kills only very few people, around 2% as it is usually only an IN SITU carcinoma.  The problem is it can be an aggressive starting point for differentiation into a wide variety of more invasive types of breast cancer cells and this is what has happened to me.  I have my tumor out next Thursday, but it will be followed with a regime of radiation.  This is apparently not just to kill off any breakaway cells but because where one comedo type DCIS  has broken its walls to become an IDC Nos there is apparently very good chance others comedo type DCISs be waiting in the wings.  So the goal of radiation is to kill them whilst they are still DCISs before they upgrade to IDC status.  

But what intrigued me was that how could these comedocarcinomas contain dead matter and not be dead?  That they were dead inside by not outside?  It struck me these were kind of zombie cancers!

I became particularly interested in comedcarcinomas because of the necrosis issue, the dead material in them.  How did it occur?  Why did the body not go and clean it up before it became surrounded by cancer cells?  What was the difference between this internal necrosis (dead cells) and apoptosis, the process of cell death?  Were comedocarcinomas indications the immune system had failed at adequate apoptosis?  Or was the process something else?   I'm not a doctor, not a nurse, but I wanted to understand it as best I could.

I was interested to learn that necrosis, which is inside of comedocarcinomas, is not the result of apoptosis at all.  That by contrast, necrosis is premature cell death (as opposed to programmed cell death) caused by things like trauma to the cells, infection, toxins.  But this premature cell death in the case of comedocarcinomas is due to starvation of the more internal cells due to the fast rate of growth of this form of cancer.  

So the surrounding cancer cells essentially got to the nourishment first, my own healthy cells.  And as this kind of cancer keeps feeding off healthy cells further and further out, cancer cells deeper within the tumor die, but this doesn't kill the cancer.  The outer cancer cells just keep feeding themselves off healthy supply - bastards!

I was diagnosed with Invasive Ductal Carcinoma Not-Otherwise-Specified.  Biopsy showed my tumor to be around 2.3cm.  It had begun as comedocarcinoma but differentiatiated into mixed types of cancer cells.  My tumor was too close to the breastbone for me to feel safe with it starting up again.  Understanding the high return of this starting point, I opted not for lumpectomy but for mastectomy and understood this would help me also avoid needing radiotherapy.  This turned out to be a good decision as the tumor was actually 3cm not 2.3cm and had two comedocarcinoma starting points which had connected up as they'd differentiated into further types of more invasive cancer cells.  The bad news was when a tumor is 3cm or larger the treatment then becomes adjuvant chemotherapy as even a negative lymph node result has a 15% risk of being a false negative once a tumor is 3cm or over and a 3cm tumor has a significantly higher chance of having cells break away and enter the rest of the body, leading to secondaries.  Chemo is different for every person and mine has been a challenge.  But I'm getting there.  At the end I'll have a 2nd mastectomy as return rate of comedocarcinomas is too high and its development so fast  for me to sit back and wait for it to start this whole process again.

Donna Williams, BA Hons, Dip Ed.
Author, artist, singer-songwriter, screenwriter.
Autism consultant and public speaker.
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I acknowledge Aboriginal and Torres Strait Islander people as the Traditional Owners of this country throughout Australia, and their connection to land and community.